Has Covid-19 left you frustrated and disappointed? Have there been caregiving, family, or other gatherings that you have not been able to take part in, leaving you with the scene of frustration and disappointment? Frustration and disappointments are an inherent part of caregiving, yet Covid-19 has added new aspects of frustration and disappointment, too often involving lack of caregiving support and companionship.
Daily caregiving has its own challenges that bring frustration and challenges on a regular basis. No matter what ails your loved one, there are good days, and the not-so-good days. Providing and responding to physical care and mental status changes of our loved ones is exhausting. Coupled with the inability to take time for our own personal wellbeing, and recharging, leaves us vulnerable to increased feeling of isolation, disappointment and frustration.
Those around us are wearing masks and other protective items, they can no longer give us a hug and we cannot see their comforting facial expressions. Technology connects us to the outside world, yet at times it misses the mark. Not everyone has access to, or is comfortable with the computer. Software like FaceTime, Skype, and Zoom can help bridge the human interaction gap. However, some individuals are expressing the sense of being “over Zoomed” and find it more stressful to having to “look good” for the other call participants.
Physical distancing and protective measures resulted in many caregivers having less personal and emotional support for their loved ones. For those living in senior communities, guidelines prevented family member and some paid caregivers from providing assistance. The lack of housekeeping assistance, visits from friends and family also contribute to the sense of isolation. Every caregiver has a story to tell; even in the “normal” times, they found some friends and family became more distant when the loved one’s condition was declining. These feeling for many have been significantly intensified over the last several months.
It is so easy to focus on all that is not going well; the decline of the loved one, the inability to obtain physical caregiving support, not going out to partake in those activities that brought us joy and recharged us. Everyone has had an event that they could not partake in, a funeral, cancelled wedding, anniversary or birthday party, or a celebration of new life that has been put on hold. No doubt the inability to take part in a much anticipated life-cycle event has resulted in sadness. Take a few minutes to grieve those losses, and focus on recharging. No one could have imagined the current state of affairs.
While we are physically distanced from friends and family, we need to make every effort not to be isolated. Are you hungry for human contact? Individuals are social beings, and there is an innate desire for socialization. For caregivers, the need for the additional physical caregiving support and assistance is vital. The need for caregiving assistance and support is more than a quest for sociability.
What to Do?
Given that so much is out of our control, keep your expectations realistic. You can only control yourself. During times of stress, uncertainty, and change, others may act or say things that may be hurtful or disconcerting. This is the time to “give them a break.” Each of us responds to uncertainty in our own way based on our individual experiences and culture. Take a mini mental-break from caregiving responsibilities to focus on YOU!
- Continue physical distancing and taking appropriate precautions
- Try to “connect” in a way that is comforting while being physically distanced
- Do something nice for yourself – consider this the “rainy day”
- Utilize the good china
- Wear something special, just because
- Read a book or listen to music
- Use the fancy soap, or other special cosmetic/after shave that you have been saving
- Destress – consider utilizing a stress reduction app
- Dig into a task that you have been putting off – purging a drawer or file
- Express your frustration about your current reality
- Focus on what you have to be grateful for. Document the beauty you see through your window, the random acts of kindness that have been expressed to you. Reflect on happy memories and document them so you can reflect back on them when your mood is dark
- What are you hoping for? What is on your future wish list?
- Create a list, a vision board with pictures – keep focused on the future
- List the people you want to get together with in person – create that visual
- Start to think about how you would like to do when physical distancing guidelines are lifted
- How do you want to “celebrate”?
- What would be meaningful to you?
- Do something special for someone else
- Make a call
- Send a card
- Send a gift that would have meaning for the recipient
- Make a donation to a cause that has meaning to you
This Will Pass
A new normal is on the horizon, things will be different. Yet, there will be opportunities to get back to the things that brought you joy. Think how you will enjoy the many new firsts; getting your haircut, having your nails done, eating out with friends, having additional caregiving support, being able to go to the store and pick out the items you want and not have them picked for you.
Becoming a caregiver could come on slowly as a loved one declines or as a surprise, resulting from an accident, sudden new diagnosis, or resulting from unanticipated medical complications. Being thrust into the role of a caregiver often comes without warning or training. Caregiving surprises arise for each and every one of us who has taken on the role of caregiver. If you are a repeat caregiver, your caregiving surprise may be that this loved one’s care is very different from previous caregiving experiences.
On the surface, the role of caregiver appears to helping the loved one in completing the activities of daily living. There are recognized basics of self-care task for maintaining independence: eating, bathing, toileting, dressing, and transferring (functional mobility). One or more of these basic activities have been taken on by the caregiver. This in itself leads to many caregiver surprises. Not every caregiver is comfortable handling such personal care activities and the loved one may be resistant to the needed care and assistance.
You Don’t Know
Each caregiver is unique, as is the loved one they are caring for. Given culture, background, personal, and professional responsibilities, the caregiver may have had little exposure or insight as to what goes into caregiving. You just don’t know what you don’t know! As such, caregiving is a real surprise. One of the first caregiving rules to know is that it is perfectly OK to ask questions and seek guidance. No one turns into a caregiving expert with the tap of a fairy wand.
Each Day, A New Surprise
Caring for a loved one is dynamic; everything is “fluid,” just like a lava lamp. No two hours or two days will be the same, especially as the loved one’s mental and physical health changes. For those caring for a loved one with mental health or dementia issues, the constant repetition of the same question, not remembering simple instructions, or recognizing family members is trying and heartbreaking. Often this is one of the hardest caregiver surprises to muddle through. Having to master ever changing caregiving tasks is straining and results in stress and worry.
Has Anyone Else Done This
Caregiving has been going on since the beginning of time in one form or another. You are not the only person facing caregiver surprises. Combat feelings of inadequacy and isolation by reaching out and asking for specific help and guidance. Guidance, resources, and support are available for the asking; do not be shy about reaching out for assistance.
Do you need help and guidance as to:
- What do I do next?
- How do I take care of “me” while caring for my loved one?
- What does this situation really mean for me, and my loved one?
- Where can I get help?
- Can we stay in our home?
- I have not shared my care preferences and wishes with my children, how do I do that?
- What will happen to my loved one if I am sick in bed?
- What do I tell the family?
- How can I get the family to help me?
- Who do I call about…?
Do these questions sound like those that you have been wondering about? Have you been uncomfortable asking for help and guidance? Assistance and support is available to you, gain confidence and peace of mind. As you embark on this new role, you can minimize the number of caregiving surprises and decrease your learning curve by hiring a consultant to assist you with the caregiving transition.
This article was originally written as Care Assistance article/guest blog spot for the Law Offices of Jeffrey G. Marsocci, PLLC.
Memory creation is impacted by our relationship with our loved one. Each relationship had high and low moments; the real question is how do we want to remember our loved one? After the passing of a loved one, there are numerous options available for preserving precious memories of your time together.
Memory Creation, How To Remember Your Loved One?
For many, the focus will be on happy, and special times shared, while for others, unfortunately, the memories will be centered on feuds, rivalries, and missed opportunities. Memory creation is a way to remember a loved one in a special and tangible way.
Memory creation can also be touchable, through various art and media forms. Consider your relationship with your loved one, and what type of a tangible memory form brings meaning to you. There are many different ways to carry out memory creation; to honor, and recognize the relationship that you had with your loved one. There are a number of art forms, and objects that help with memory creation, and serve to keep your loved one’s presence close. Do not be limited by the following options, think about what form of memory creation would bring the most meaning to you.
Pictures, Books and Trinkets
Do you have pictures and digital images of your loved one that brings a smile to your face? Do you have images of places where you spent time together and created fond memories? What about special recognition moments; be they professional or of a family milestone?
Ideas To Consider
There are many services available where digital images of your special pictures can be arranged into a hardcover book containing the images and text that is meaningful to you. You have the flexibility to determine the size and fonts used to highlight the special moments of meaning. This type of a memory book can be created for various family members and friends by utilizing pictures that have special meaning to the recipient.
Photos may also be incorporated into cards, mugs, plates, blankets, tote bags, shirts, and wall hangings. Images etched into wood, Lucite, and glass are gaining popularity. Digital photo albums that continuously display a rotating selection of pictures, is another way to keep the memory of a loved one close at hand.
There are numerous vendors that help you assemble photobooks, some are online, drug store photography departments, and wholesale discount stores.
Memories in Fabric
There is no limit as to how fabrics can take on a special memorial meaning. Imagine how you could remember a loved man who had an extensive tie collection or had a fondness for clothes or fabrics! Consider the creation of a wall hanging, blanket, handbag, or tote bag made up from pieces of ties, shirt cuffs, suits, fancy dresses, lace or T-shirts. There are patterns readily available, or professional services to assist with the creation of a new item made from fabrics that had meaning to the loved one or you.
Pam Missimer, of Baggins Handbags’, is a designer and shares that “handmade bags and other personalized items enhance your beauty and personal style. They are customized and can include a sentimental fabric. By using primarily sustainable and even recycled natural materials like denim and wool clothing, these bags have a unique character while still being versatile and modern. Your sentimental fabric can be turned into something you will use and love every day.”
Many of these craft professionals can be found on Etsy. A quick Internet search will show a variety of examples to help you decide what may be the right memory creation for you.
Your loved one may have bequeathed a piece of jewelry that had meaning to them. Jewelry is very personal, and the item left may not be in keeping with the times or your taste. For example, if your mother or grandmother left you their engagement ring, you could incorporate the gemstones, into a new bracelet or pendant. The new piece of jewelry should bring a smile to your face each time you see and wear it. It is another way to reflect on the special memories that you shared with the loved one. Start by asking trusted friends for recommendations and exploring the work of local jewelers, take your time, be sure that the design is truly what you want.
Plants and Flowers
For some, a garden or a special plant holds a unique connection to a loved one. What was their favorite plant? Cactus, orchids, irises, or lilies may have a special significance to your loved one or you. It may be a hobby that you had in common, or you may have been left with a collection of plants that need some love and attention. This may be a way to create new memories for yourself, while reflecting back on the loved one.
Trees and Stars
For some the connection with the environment is strong, and one way to honor the memory of a loved one is by planting a tree in their memory, the family is typically sent a certificate memorializing the tree purchase. If your loved one was one who appreciated the stars, similar options are available to purchase a star. It is important to remember that this is not an official naming, yet a nice way to honor a loved one. A certificate is also typically sent to recognize the tribute.
Bricks and Plaques
As part of fundraising efforts, many organizations provide a support option that includes purchasing a commemorative brick. The brick or plaques are then engraved with a commemorative message. This provides a visual that can be appreciated by other individuals who frequent the venue.
Individual Memory Creating
Each person’s memory creation is unique to the relationship shared with the loved one. Consider how you would like to create a new memory based on the relationship and love shared. What can you do to help another family member or special friend of a loved one create a tangible memory of distinct times shared? The possibilities for memory creation are endless; let your imagination go wild with the options.
Who would have thought that we would be dealing with a pandemic that has impacted every aspect of our lives? Some of us may be quarantined, staying in place, or confused as to what to do. COVID-19 is currently understood to be highly infective and easily transmittable from person to person through droplet and contact spread.
In the near future there is a high probability that we may be one of those who become infected, or we know someone who has been impacted by Covid-19. Hopefully, recovery will be quick, and there will be a return to good health. Regrettably, given the statistics, we will all have the unfortunate opportunity to have someone close to us suffer the more serious impact of this virus, and need hospitalization. This is when it is so critical to have the Advance Directive documentation to guide the medical team as to your wishes. Depending on your age, overall medical condition and availability of resources in your area your Advance Directive becomes more critical.
The issue of how care resources will be allocated is a hot topic for healthcare professionals and health systems. Care prioritization is no longer a hypothetical, it is becoming a reality. The American healthcare system is quickly learning from China, Italy, Spain and the UK that resources are finite, and will need to be equitably distributed. This is in contrast to the “first come-first served” that some institutions are using. In reality, field medicine (i.e. wars and natural disasters) has been utilizing triage protocols focusing the care on those individuals that had the best chance of making it through the medical crisis.
What is known about COVID-19 is being constantly updated. This includes testing measures, management and the handling with the compassion the volume of individuals who are dealing with COVID-19. Individual fears and desires that “everything” be done for your loved one, may not happen. Resources are very limited, and every effort is being made to use them in a way that is fair for everyone. Be prepared that for the fact that despite the best of intentions, not everyone will get all the available resources.
Crisis Standards of Care
Utah’s Crisis Standards of Care Guidelines outlines the allocation of patient care resources during an overwhelming public health emergency. The focus of care shifts to the “thoughtful use of thoughtful use of limited resources for the best possible health outcomes for the population as a whole. Resources are shifted to patients for whom treatment would most likely be lifesaving and whose functional outcome would most likely improve with treatment. Such patients should be given priority over those who would likely die even with treatment and those who would likely survive without treatment.”[i]
Certain preexisting and acute medical conditions may exclude admission or transfer to critical care:
- In a coma or vegetative state; with severe dementia; advanced untreatable neuromuscular disease or other malignant disease
- In end-stage organ failure or failures; or suffering from traumatic brain injury or severe stroke with minimal chance of recovery
- In cardiac arrest; with severe acute trauma; or severe burns with less than a 50% chance of expected survival
- Over 90 years old
New York, Alabama, Minnesota and Tennessee are among the states that also have policies for crisis care. Some of these policies address ventilator allocation[ii]. The Institute of Medicine issued in 2009, Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations, all these resources are guiding, practitioners who have to consider the severity of illness, prognosis, and the amount of resources needed, as they determine how the scare resources are to be allocated. The reality is that practitioners are already making some of these determinations and health systems are working cooperatively to address the allocation of resources in a respectful, ethical and equitable way.
Individuals with Disabilities
The issue of managing the care of individuals with disabilities is challenging given the Federal Americans with Disability Act. Individuals with disabilities are asking the federal government to address care rationing that would deny individuals with disabilities treatment for COVID-19. It will be a balancing act; no matter what, every effort to keep patients comfortable will be made. A recent HHS bulletin notes “Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”
On April 8, 2020 Alabama removed controversial ventilator guidelines that denied COVID-19 care to the disabled. This was in response to the state’s preparedness plan that prioritized the treatment of able-bodied individuals over people with physical and intellectual disabilities. This was in response to a complaint filed with the Health and Human Services (HHS) Office for Civil Rights (OCR). Allocation of resources is still a critical issue facing front line practitioners, and remains an issue to contend with in these very unusual times.
Palliative Care and Hospice
If there was ever a time to focus on keeping individuals comfortable, this is the time. Palliative care and hospice services are designed to keep individuals comfortable for when aggressive medical care is no longer appropriate. It is the approach of alleviating symptoms and keeping your loved one comfortable. Even if there is no Advance Directive, consider how your loved one would want to be cared for during this crisis. Be realistic recognizing all that is currently known. Would your loved one prefer to pass on peacefully once there is little chance that they will recover? Acknowledge that these are extraordinary times.
Personal Action Plan
- Complete an Advance Directive & upload to a registry – keep it handy and not in a safe deposit box
- Name a healthcare surrogate/proxy
- Ensure your healthcare surrogate/ proxy is aware of the designation and will advocate for you
- Name a backup healthcare surrogate/ proxy is aware of the designation and will advocate for you in the absence of your primary choice
- Avoid probate – contact your elder attorney & financial planner
- Ensure that beneficiaries are named on life insurance policies
- Ensure all property disposition is addressed – there are state specific nuances
- Take the time to communicate with those you love
- Learn more about palliative care and hospice – the symptom management approach for when the underlying condition can no longer be treated
- Reach out to those you have a strained relationship
- Social distancing
- Keep contact numbers of family and friends handy
No matter what, kindness, compassion, love, support and understanding must never be rationed!
[i] Utah Crisis Standards of Care Guidelines. (2019, January 17). Retrieved March 28, 2020, from https://coronavirus.utah.gov/wp-content/uploads/Final_Utah_Crisis_Standards_of_Care_011719-1.pdf
[ii] VENTILATOR ALLOCATION GUIDELINES New York State Task Force on Life and the Law New York State Department of Health. (2015, November). Retrieved March 30, 2020, from
Have you been delaying, or avoiding addressing the topic of Advance Directives? COVID-19 is the Advance Directive jolt, time could be running out. Being a realist, and not an alarmist; I constantly ask the question, what are you waiting for? Who will speak for you, and share your wishes when you are unable to speak for yourself? We are living in unprecedented times, the need for Advance Directives and advanced planning has never been greater. COVID-19 truly is the Advance Directive jolt.
COVID-19 Is The Advance Directive Jolt
The spread of COVID-19 combined with the various national, state and regional responses to treating individuals reinforces the need for individuals to have Advance Directive. Your underlying medical conditions, age, and those you may have come in contact with, may place you at a higher risk for contracting COVID-19. COVID-19 is the Advance Directive jolt. Remove the burden from your loved ones; avoid them having to make decisions without knowing your wishes and preferences. Avoid family members having to deal with your affairs without having all the information to make the best-informed decisions on your behalf.
Resources for Advance Directives
- Elder law attorneys are making themselves available to assist clients during this challenging time. Seek a referral from a trusted friend, relative, or financial planner
- AARP Advance Directive Forms by state
- CDC Advance Care Resources
- Five Wishes available in 26 languages
- Medline Plus, the website of the National Library of Medicine
Peace of Mind
Peace of mind is a gift, not just to yourself but to your loved ones. That peace of mind can only come when you have completed an Advance Directive, named your healthcare surrogate, and spoken to those who you have named to speak on your behalf. These individuals need to be able to pick up and manage your affairs. Have you added these individuals as beneficiaries or granted them access to safe deposit boxes and bank accounts?
Have you shared ALL the information needed to address your business affairs?
- Passwords (banking, websites, insurance, medical portals, utilities, social media…)
- Access to properties – keys for cars, storage units, boats…
- Location of key documents – your filing system, checkbooks
- Provided a copy of your Advance Directive
- Funeral home
Advance Care Planning
There are a number of apps to assist; Just In Case Planning is one free tool that is helpful in organizing all of your Advance Care Planning into one location, and you grant access to those acting on your behalf.
Who would have thought that we would be dealing with a pandemic that has impacted every aspect of our lives? Some of us may be quarantined or staying in place. COVID-19 is the Advance Directive jolt, the kick in the pants to spur action. Utilize this gift of time to address or update your Advance Directive. Take the time to reach out to those you love, let them know how important that they are to you. If you have treasured belongings and know that there is someone who would appreciate the item, tag it or make a distribution of property list. This will minimize some hard feelings down the road.
It is also the time to make amends with those you might have drifted away from despite the reason. Make your day and their day by mending the relationship. Leave letters and note for those you care about, share the impact that they have made on you.
In the near future, many of us will have been impacted or know someone who has been impacted by COVID-19. Hopefully, we and they will recover quickly, and return to good health. Unfortunately, given the statistics, we will all have the unfortunate opportunity to have someone close to us suffer the more serious impact of this virus and need hospitalization. This is when it is so critical to have the Advance Directive documentation to guide the medical team as to your wishes. Depending on your age, overall medical condition and availability of resources in your area, your Advance Directive becomes more critical.
Personal Action Plan
- Complete an Advance Directive & upload to a registry – keep it handy and NOT in a safe deposit box
- Name a healthcare surrogate/proxy
- Ensure your healthcare surrogate/ proxy is aware of the designation and will advocate for you
- Name a backup healthcare surrogate/ proxy; be sure this individual is aware of the designation and will advocate for you in the absence of your primary choice
- Avoid probate – contact your elder law attorney & financial planner
- Ensure that beneficiaries are named on life insurance policies
- Ensure all property disposition is addressed – there may be state-specific nuances
- Compile a medical and surgical history
- Include all medications, prescription, and over-the-counter
- List all known allergies to medication, foods and any other substance (latex)
- List of treating practitioners
- List emergency contacts
- List the individuals you authorize the practitioners to discuss your care
- Take the time to communicate with those you love
- Reach out to those you have a strained relationship
- Frequent handwashing
- Practice social distancing
- Stay connected by phone, video chat, email
- Focus on the positive that is going on
- Keep contact numbers of family and friends handy
Have you seen the increase in the number of individuals wearing disposable gloves in public? Gloves do create a barrier between the skin and touched surfaces, but they are only a barrier as strong as the glove. No matter the type of disposable gloves (vinyl, Nitrile, latex) used; gloves are not a substitute for handwashing!
Disposable gloves have been used by healthcare professionals as a barrier to blood and bodily fluids; and became a standard known as Universal Precautions, once it was discovered how HIV was spread. One of the key pieces of information to remember is that gloves are not “perfect”. They may become torn or develop micro-punctures during use that are not easily seen. Gloves wear out. The use of gloves is not a substitute for handwashing.
For the best protection, use the right sized glove. A Cinderella fit is needed; a glove that is “too big” will slide on your hand and make it harder to grip things. A glove that is “too small” may not stretch sufficiently or tear during use. No matter what glove you use, gloves are not a substitute for handwashing. Handwashing should always be done after glove removal.
Putting On Gloves
- Wash your hands well with soap and rinse them with clean, running water. Then dry them well
- Hold the glove (open end) in one hand, and put your other hand into the glove
- Repeat with your other hand
There is an art to removing disposable gloves to minimize the chance of spreading germs to yourself and others. When you take gloves off, make sure the outsides of the gloves do not touch your bare hands. Follow these steps: If you are right-handed (if you are left-handed, reverse the steps)
- Grab the open end of your right glove with your left hand
- Pull toward your fingertips. The glove will turn inside out
- Hold onto the empty glove with your left hand
- Put 2 right-hand fingers in the opening of your left glove
- Pull toward your fingertips until you have pulled the glove inside out and off your hand. The right glove will be inside the left glove now
- Throw the gloves away in a waste container
- Wash your hands well with soap and rinse them with clean, running water. Then dry them well
Wearing Gloves In Public
I have watched people using gloves in the supermarket, walking, and while performing a variety of different tasks that do not typically require gloves. The use of gloves can provide a false sense of protection. I have seen individuals with gloves touching their face, and doing things that they would not consider doing without the gloves. Undamaged gloves do offer protection, as long as it is the right type of glove for the job. Do not assume that your gloves are “made of steel” and will never damage. No matter what, gloves are not a substitute for handwashing.
Some individuals develop or have allergies to latex (made from rubber). These allergies tend to become more severe with repeated exposure. It is very important that you wash your hands and any bodily surface that may have come in contact with the latex. Monitor your symptoms; seek emergency assistance if you experience any difficulty breathing. Be sure to wear your latex allergy identification bracelet. It is vital that you share this with individuals who may touch you wearing disposable gloves. Verify that latex gloves are not being used in your care.
What To Do
- Seriously consider if you need to use gloves for the task at hand
- Never reuse disposable gloves
- If you have a supply of disposable gloves that could be donated for the care of patients, please do so. Caregivers and healthcare workers do not have the needed supply of gloves
- Wash your hands frequently – gloves are not a substitute for handwashing
Social Distancing Isn’t Isolation
Social distancing is the new buzz word. According to the CDC, it means “remaining out of congregate settings, avoiding mass gatherings, and maintaining distance (approximately 6 feet or 2 meters) from others when possible.” This guidance is intended to minimize close contact and decrease the chance of coming in contact with someone who has respiratory symptoms. Social distancing isn’t isolation. It does not mean that you have to be locked away from others.
There Are Many Unknowns
Daily, we are learning more about COVID-19, its spread, and the precautions that need to be taken to decrease the chance of exposure. All of the guidance provided relating to COVID-19, also apply to flu protection. The kicker with COVID-19 is that there are many more unknowns; no vaccine and treatments are still being identified. Everyone needs to practice social distancing, to minimize exposure. Social distancing isn’t isolation!
What Is Isolation
According to the CDC, when someone is isolated, they are “known or reasonably believed to be infected with a communicable disease and potentially infectious from those who are not infected to prevent the spread of communicable disease. This lets them recover without spreading the virus to anyone else. Isolation for public health purposes may be voluntary or compelled by federal, state, or local public health order.” Individuals in isolation may, or may not be feeling ill.
Those at Higher Risk
For the elderly and those who are at higher risk of getting sick, often they are already vulnerable to social isolation. The CDC has identified groups of people who are at higher risk and should be practicing social isolation.
- Older adults, over 60, especially men
- People who have serious chronic medical
- Heart disease
- Lung disease
- People with weakened immune systems
- Those on immune-suppressants and biologics/bio-similars
What You Can Do to Keep Yourself and Your Family Healthy
The most trusted guidance comes from the CDC; their website is continuously being updated, reflecting the most up-to-date information.
- Take everyday preventive actions to stay healthy
- Avoid close contact with people who are sick
- Avoid touching your eyes, nose, and mouth
- Stay home when you are sick
- Cover your cough or sneeze with a tissue, then throw the tissue in the trash
- Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe
- Wash your hands often with soap and water for at least 20 seconds
- Wash hands after removing gloves! The use of gloves is not a substitute for handwashing
- Follow public health advice regarding school closures, avoiding crowds and other social distancing measures
- Stay informed. CDC’s COVID-19 Situation Summary will be updated regularly as information becomes available
What to Do if You are At risk
There have been reports of shortages of various paper goods, hand sanitizers, some cleaning supplies, and bottled water. These will be alleviated over time. Do not panic, stocks will be replenished. Be open to swapping supplies with friends and relatives.
- Stock up on supplies (non-perishable food, household supplies, pet supplies, etc.)
- Utilize delivery services for medication, medical supplies, and other items to reduce the number of times needed to leave the home
- Socially distance – Take everyday precautions to keep space between yourself and others
- When you go out in public, keep away from others who are sick, limit close contact, and wash your hands often
- Avoid crowds as much as possible
- Avoid cruise travel and non-essential air travel
- During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed
How to support those in need
Supporting those in social isolation means ensuring that they have the needed supplies to remain away from the public and still continue with their activities at home. Not everyone has access to commercial delivery services, so the assistance of a trusted relative, caregiver, or friend is so important.
Reach Out & “Touch” Differently
- Provide meals and perishable foods
- Proactively ask what they may need and help them obtain:
- Prescriptions and other medically necessary items
- Hand sanitizer – this may be hard to obtain, many areas are reporting shortages
- Paper goods
- Paper towel
- Toilet paper
- Forms of entertainment
- Library books, audiobooks, magazines
- Puzzles, crossword puzzles, Sudoku books, cards…
- Help them stay connected
- Call and check in on them by phone
- Send greeting cards, or other small items through a mail-order or shipping distributor
- Use of Messenger, Skype, WhatsApp, Zoom
- Mobile assistants, Alexa, Siri
- Determine if professional pet services are needed, if the owner is unable to care for the animal
- Determine if additional services are needed to minimize injury
Stay Connected Safely
To minimize the personal impact of social distancing, be sure the individual is truly not socially isolated. Reach out in a way that is safe for both of you. Be creative in keeping yourself and others engaged and not consistently focused on the various challenges facing all of us today. Use trusted sources of information to guide you through these times.
Will My Advance Directive Be Followed?
You have soul-searched and taken the time to think about how you want to live while dying and come to terms with how you would like your dying to be managed. This is not an easy or quick process; for some this journey may take years.
The question “Will my Advance Directive be followed?” This is a real and valid concern that many individuals express apprehension about. Hopefully, you have a healthcare surrogate or proxy who is willing to standby, and advocate on your behalf. The advocacy by the healthcare surrogate or proxy is vital in ensuring that your wishes are honored.
In the recently published article Association of Physician Orders for Life-Sustaining Treatment With ICU Admission Among Patients Hospitalized Near the End of Life in JAMA reported that advance directives entered by physicians, based on the individual’s wishes, were not followed in almost 40% of patients with a terminal illness. Unfortunately, these individuals with chronic life-limiting illnesses who had advance directives, had their wishes were ignored, leading to unwanted aggressive care.
So what does this mean for you? There is no substitute for a healthcare surrogate/healthcare proxy with strong advocacy skills, and a commitment to ensuring that your wishes/values are respected. Your clearly articulated Advance Directive needs to be readily available, and your advocate must be ready to speak up on your behalf.
I have an Advance Directive, Now What?
The Advance Directive is a document that speaks for you when you are not able to share your medical care wishes. It needs to be readily available and visible, to emergency medical responders or caregivers. Your healthcare surrogate or proxy may not be present to alert those that need to know of your wishes, leading to medical care you may not want. The desire to keep Advance Directive documents secure has resulted in them often being place in bank safety deposit boxes, vaults, safes, file cabinets and other secure hiding places making them unavailable in time of need.
Making my Advance Directive Available
There are a number of registries that provide a platform for you to upload a copy of your advance directive. Some are State-based; others are commercial such as the U.S. Living Will Registry (now known as the Advance Care Plan Registry). These registries make your Advance Directive available around the clock to those with the appropriate access to the information and protect them against theft, fire, flood, or natural disaster. Your healthcare providers should have copies of your Advance Directive, along with your healthcare surrogate or proxy.
Recommendations to ensure that your Advance Directive is available when needed:
- Upload to a registry
- Have several copies available
- Give copies to your surrogate, trusted friends, hospital, and medical providers
- Upload to your phone, and those of trusted individuals who will advocate on your behalf
Do not have a false level of security or leave to chance the need for a strong healthcare surrogate or proxy who is informed about your wishes. This individual must have an updated copy of your Advance Directive, be willing, able, and available to advocate on your behalf. For your peace of mind, do not leave anything to chance.
References & Resources
Association of Physician Orders for Life-Sustaining Treatment With ICU Admission Among Patients Hospitalized Near the End of Life. Robert Y. Lee, MD, MS1,2; Lyndia C. Brumback, PhD1,3; Seelwan Sathitratanacheewin, MD1,4; et alWilliam B. Lober, MD, MS1,5,6; Matthew E. Modes, MD, MPP1,2; Ylinne T. Lynch, MD2; Corey I. Ambrose, BSc7; James Sibley, BS1,5,6; Kelly C. Vranas, MD8,9; Donald R. Sullivan, MD, MA, MCR8,9; Ruth A. Engelberg, PhD1,2; J. Randall Curtis, MD, MPH1,2,5,10; Erin K. Kross, MD1,2. JAMA. Published online February 16, 2020. doi:10.1001/jama.2019.22523
Advance Care Planning: Healthcare Directives from the NIH
#advancecareplanning #healthcareproxy #advancedirectives #polst
Just In Case Planning
Do you have a will? Does someone else know your home alarm code? After you are gone, are there items in your home that a loved one might find upsetting? Rather you know it’s coming soon or it feels far off, many people are not prepared for their death.
The new year is a perfect time to take a look at where you’re at when it comes to planning for your “just in case.”
Often, the hardest part of planning is getting started. The free website Just In Case Planning separates your plans into six easy to use forms that you can easily share with loved ones or save to file with other important documents.
Wills and End of Life Care
Wills and decisions about end of life care are probably the topics you would think of first when thinking about planning for “just in case.” However, according to a Gallup poll, only 40% of Americans of all ages report that they have prepared a will.
Setting up advance directives and medical power of attorney is something you may think of as needing only when you are diagnosed with a serious medical issue, but the reality is at any moment your loved ones may have to make decisions that they were not prepared to make. Giving them the confidence that they are making the right decision for you can alleviate so much stress from an already stressful situation.
Everything from burial preference, song choice, and even an obituary can be prepared in advance when it comes to funeral planning. Creating a plan with a funeral home or even writing down your wishes for a loved one can ensure that you are remembered for what matters most to you.
Planning for “just in case” can feel administrative and unemotional, taking time to also include letters of reflection to loved ones can be a priceless gift and legacy to leave behind. Just in Case Planning includes prompts to guide you in creating these letters.
Financial organization can feel daunting, but ensuring that your beneficiaries are current and match any wishes spelled out in other documents is a great place to start. Just In Case Planning also includes forms to list your financial accounts and creates a downloadable document where you have the option to fill in any online login information to securely store in the event that someone would need to access or cancel any accounts.
Digital and Physical Clean Up
In this digital age, almost all of us have bills we pay online, automatically, that we may not even think about from month to month. Just In Case Planning provides a form for you to list out all recurring charges (things like streaming services, cloud storage, subscription boxes, etc.) that hit your account every month/quarter/year that would need to be canceled or transferred in the event of your death.
Physical clean up should not be overlooked either. Does someone else have a copy of your house key? Does someone else know your home security code? Does someone else know where your storage unit is? Are there items in your home that a loved one might find upsetting? These are details that are often overlooked when planning for “just in case.”
Just In Case Planning
The free resource, Just In Case Planning helps people work through the process of preparing for the inevitable by keeping track of pertinent end of life documents, recording funeral considerations, creating a digital clean-up plan, and providing a space for reflections and messages for loved ones.
Peace of Mind
The Just In Case Planning tool is a wonderful gift to leave for those who want to honor your wishes and may not know your preferences. You have the ability to update and modify your preferences, and the information is available to those individuals to whom you have granted access. One never knows when an accident or illness may impact our ability to function. There is now a place where your “critical” information about your preferences and wishes can be readily available to those that need to make important decisions on your behalf. Give the gift of peace of mind not just to yourself, but also to those who are important to you.
Caregiver Stress: It’s Not What You Think
A quick Internet search for “caregiver stress” will yield millions of results. Everyone has an opinion on the topic, and there are more statistics than you can imagine. There is even a diagnosis called “Caregiver Stress Syndrome.” This is obviously something very real, impacting the caregiving community. So how do you treat the problem? Again, back to your Internet search and you will find oodles of symptom management pages, but in my opinion, there lies the real problem. People are treating the symptoms.
Treating Symptoms V. Cause
Let’s look at how the Mayo Clinic suggest treating caregiver stress. I’m selecting the Mayo Clinic because they have published a position paper and they are a recognized authority in the medical community. To summarize the article’s strategies for dealing with caregiver stress into one sentence, it states: accept help, focus on what you are able to provide, set realistic goals, get connected, join a support group, seek social support, set personal health goals, see your doctor.
I’m going to suggest to you that these strategies address the symptoms of caregiver stress, not the cause. If the goal is to minimize caregiver stress, then the focus has to be on addressing the cause, not the symptom.
To address the cause of caregiver stress, proper identification of stress is needed. The Merriam-Webster dictionary definition of stress is “a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances”. The Cleveland Clinic defines stress as “Stress is the body’s reaction to any change that requires an adjustment or response. The body reacts to these changes with physical, mental, and emotional responses. Stress is a normal part of life. You can experience stress from your environment, your body, and your thoughts. Even positive life changes such as a promotion, a mortgage, or the birth of a child produce stress.” I believe the Cleveland Clinic is getting closer to the root cause, but feel they come up short on providing the caregiver with the tools to address stress.
Enough of dodging the topic! So, what is my definition of stress? Stress is the misalignment/mismatch of expectations. It can occur in your job or personal life. It may manifest from:
- Poor communications
- Urgency pressures
What Can You Control?
As a caregiver, you must recognize that you can only control what is within your control. For everything else, consider:
- Make recommendations to counter what is outside your control
- Delegate or ask for specific help
- Clarify communication
- Escalate to the next level of management
- As a last resort, remove yourself from the situation (temporarily or permanently)
Take a moment and digest this definition … stress is the misalignment/mismatch of expectations. The traditional approaches to addressing stress focus on caregiver self-care, such as taking a walk, listening to music, journaling, meditation, etc. These approaches are important but do not address the mismatch of expectations that is causing the stress. Now, let’s apply it to some caregiver situations and see how you might reduce your stress by setting and managing expectations.
|Stressor: Insufficient supplies provided by agency. For example, you expected 1 week of medication/supplies and received a partial shipment. |
Mismatch of Expectations: Due to a limited amount of supplies, causes stress to the caregiver. Now they have to scramble and obtain necessary supplies.
|1. Contact agency nurse / representative|
2. Review care plan with agency; learn why the supplies were cut
3. Address with the agency the necessity for the supplies
4. Obtain agency commitment to provide the ordered supplies and that care is not interrupted
5. Escalate as appropriate with agency and/or physician
|Stressor: Home health aide does not arrive for the morning shift, as scheduled, and did not advise anyone. The patient is alone with limited mobility and needs assistance with activities of daily living. |
Mismatch of Expectations: Due to poor communication or scheduling, the patient is in a compromising situation and needs immediate assistance. Someone must arrange for a caregiver and provide the caregiving services until a caregiver arrives.
|1. Contact agency nurse / representative|
2. Find someone to provide immediate caregiving services
3. Address with staffing problem with the agency
4. Develop a backup caregiving plan
|Stressor: Loved one is declining faster than expected |
Mismatch of Expectations: The stress from this situation can impact your loved one, family, and the caregiver. Common reasons may include: a lack of understanding of the condition progression, an unwillingness to accept the diagnosis, or unanticipated complications.
|1. Write down questions to ask the healthcare provider|
2. Obtain an understanding of the current symptoms are temporary or a decline in condition
3. Determine if clinical information is being kept from the loved one, causing them distress
4. Seek clarification on the care plan
| Stressor: Ineffective handoff between caregivers causing care or treatment to not meet the loved one’s needs |
Mismatch of Expectations: The stress from this situation can impact your loved one, family, and the caregiver. Common reasons may include: poor communications, lack of follow-through, or comprehensive documentation of care.
|1. Define how you will communicate. This can be paper, whiteboard, app, etc.|
2. Define the items that must be discussed and documented at each handoff. E.g. medications, vitals, feeding, toileting, pain & symptom management, level of consciousness and mood
It is my sincere hope that I have offered you a different perspective on how to better understand and manage caregiver stress.
How Can Caregivers Protect Themselves and Remain Safe?
My name is Rachel Blackwood, PT, CAPS with Designing Independence, and I’d like to address the physical burden of being a caregiver. Being a caregiver is no easy task, and caregiver safety is an important one to discuss.
We all know that self-care is important – whether you are a caregiver or not. Find time to exercise, even if it’s just a walk around your neighborhood. Allow friends, families and health care professionals to assist you – you will need their help. Finding a network of support is essential to your health, and to the health of your loved one.
I’d like to focus on your safety as a caregiver. Your personal safety is SO important, particularly if you are the primary caregiver. If you are incapacitated from an injury, who cares for your loved one? While no one can eliminate the risk of injury entirely, you absolutely can reduce your risk of injury by taking the proper precautions.
The first and most important aspect to consider is your body mechanics. Keeping proper body mechanics is difficult when assisting another person, but it is essential for their safety as well as your own.
Keeping your spine straight and bending your knees so you can lift with your legs is imperative, whether you are helping someone go from sitting to standing or lifting groceries. Stay as close to the person as possible when offering physical assistance.
If your loved one is in a wheelchair, make sure the wheelchair is as close to the surface you are transferring to as possible. Removing leg and armrests can reduce the number of obstacles you have to manage while getting from point A to point B. Also, make sure the chair is locked.
Be sure to have your loved one scoot closer to the edge of the chair/wheelchair and make sure their feet are underneath them. Some people find a gait belt or transfer belt to be useful when assisting another person.
Communication with your loved one is critically important but can be challenging if cognitive issues are present. Sometimes those with dementia can understand what you are saying, but it takes them longer to process the instructions. Simple, one-step instructions keep the task from being overwhelming.
What are some common mistakes?
As a physical therapist, one very common mistake I see is not allowing someone to do as much of the movement as they possibly can. When assisting someone from point A to point B, very little physical lifting should be done by the caregiver. In talking with families, I’ve discovered some reasons why this might occur:
- The caregiver is in a hurry
- I can understand this, we all have schedules to maintain and keep. But even just another couple of minutes (maybe even seconds) can ensure the transfer go smoothly and without injury for either party
- The caregiver is fearful
- Often the caregiver is so fearful of their loved one falling and injuring themselves, that they complete most of the work of the transfer. Unfortunately, that puts both parties at risk.
- The caregiver lacks proper training
- In order to maximize safety for your particular situation, it’s best to have a physical or occupational therapist do a family training session where proper lifting techniques are covered. The therapist can also help to troubleshoot the unique challenges to your situation.
- The caregiver doesn’t want to see their loved one in pain
- No one wants to see a family member suffer from the pain of an injury or illness. But in most instances, your loved one will have less pain by completing the task as independently as they can.
- The caregiver thinks their loved one lacks strength
- In my experience, most caregivers underestimate the physical strength and ability of their loved ones. You can be close by and ready to offer assistance, but let your loved one try to complete the task independently. When your loved one can complete the task independently, it safeguards you from injury. It also allows them to keep some dignity and pride from being able to complete the task.
If your loved one truly is too weak to complete the task, then lift equipment may be needed. A physical or occupational therapist can help you determine if and what kind of lift equipment would be beneficial.
Hospital staff members go through regular training on how to use lift equipment, like a Hoyer lift. Caregivers will need the same kind of training to ensure their safety and the safety of their loved ones.
Caring for a loved one is a daunting task, but seeking out the training and the safety you need can protect everyone from injury. The expertise of health care professionals can give you the confidence and information you need to best care for your loved one.
Guest Blog Post
Thanks to Rachel Blackwood, PT, CAPS with Designing Independence for sharing important information on caregiver safety. Maintaining proper body mechanics is vital for the caregiver. Should the caregiver, unfortunately, suffer a back injury that complicates the caregiving routine and may present additional hardships.
Your 2019 Year End Personal Report Card
As 2019 draws to an end, this is a time to conduct your personal end-of-year review. It is time to go beyond reviewing your financial health. Check the status of investments, legal documents, retirement contributions, and making last-minute donations to charitable organizations. Take advantage of funds left in your Flexible Spending Account (FSA) and get needed dental work, glasses, or other medical services that have been delayed. Don’t stop there; financial paperwork is only a piece of your year-end personal report card.
Financial health, physical assessments, and medical treatments are not the only areas in need of attention. A key area is a review of your Advance Directive paperwork. Who knows your wishes and will speak for you when you are unable to speak for your self? Advance Directives are crucial for individuals of all ages, as serious accidents or illnesses are unexpected.
- Do you have an Advance Directive?
- Does your Living Will reflect your current wishes?
- Have you had a health crisis since outlining your wishes and your forms need modifications?
- Are your choices of Healthcare Surrogate and Financial Power of Attorney still appropriate?
- Are those individuals still able to carry out your wishes?
- Are any home modifications needed to remain safe, and age in place?
- Do you need to purchase Long Term Care Insurance?
- Do you need to self-fund for long term care needs?
- Is your Last Will & Testament up to date and reflect your current wishes?
- Do you need to update beneficiary information?
- Do I want to be an organ donor?
On the relationship side, what needs repairing or recharging?
- With whom do you need to offer an apology or make amends?
- Who do you need to honor, recognize, or thank for acts of assistance or kindness?
- Do you want to reconnect with someone you have missed?
- What do you want to complete, accomplish, or address in the new year?
Don’t forget about yourself! Address outstanding issues, declutter material and outstanding relationship stress. Be sure to do something special for yourself each day. Make the most of the time allotted. Share your gratitude with someone who could use a kind word, smile, or a hug.
Resources for Advance Directives include: The Five Wishes, Death Over Dinner, and The Conversation Project. The holidays are a great time to share your wishes with family, allay their concerns and address any questions that surface. Having your family around to hear from you directly what your end-of-life wishes are, and how you want to be cared for when you are unable to share your care wishes, is a gift. It is often a very hard gift to share, due to the emotions associated with recognizing that you are sharing how you want to live while dying. Once shared, you will experience peace of mind and know if there are any issues between family members that need to be resolved.
Count Your Blessings
“Always keep your head up, because if it’s down you won’t be able to see the blessings that have been placed in your life.” – Anonymous
Thanksgiving is a time of reflection and introspection. How often do you stop and acknowledge the blessings in your life? As an individual with a chronic, or life-limiting illness, or a caregiver who is constantly in the caregiving mode, life can often feel bleak. It is so easy to focus on the decline in health and mentation, loss of function and of independence.
The increasing tasks of providing care occupy more and more time. They may be increasing in frequency and complexity. All this means that one is paying less attention to the activities and things that brought us happiness and peace and being more attentive to the various losses.
There are a few things that are easy to do and can help you be more attentive to those not so obvious blessings.
- Keep a journal of all the positive and happy moments. Capture the warm greetings that were shared with you by a special friend, note something funny your loved one said, write about how you felt when a meal was dropped off to you or someone did something helpful for you, memorialize something special that you saw out the window
- Play favorite pieces of music or songs that were special to you and your loved one, note the response
- Cherish the acts of “goodness” and kindness, expressed towards us, they are humbling. Acts of kindness alert and force us to acknowledge that we have “forgotten” to appreciate the goodness around us
- Reflect on all that is beautiful, good, and kind around you
- Reach out to someone; pay it forward! Return kindness and acknowledge those special individuals for what they do for you
May this Thanksgiving be a time of blessings for you and your loved ones.
Birthrights & Deathrights, a 21st Century View
The concept of “Birthrights,” the privilege of inheritance, or right of possession, is a biblical honor traditionally associated with the first born son. Over time, the rules and customs associated with inheritance, have changed and become broader. Birthrights have caused heartache to many a parent and child.
I challenge you to think about the patriarch Isaac, the humble one, the patriarch we know the least about. Looking at Isaac from a 21st-century perspective:
- Isaac is the very late in life child, whose father tried to sacrifice him.
- He suffers from post-traumatic stress and had major trust issues
- His half-brother was sent away
- He had only one wife
- Did not get a second Hebrew name
- Never got to travel outside the land of Israel
- Had twin children with acute sibling rivalry that is still raging today
Isaac is described traditionally as having no great faults, no striking virtues, and also described as the “Master of Suffering.”
I am asking you to come with me on an uncomfortable and unusual journey. I want to focus on Isaac’s last phase of life, the time frame leading up to the deathbed. Typically, when I reference end-of-life or death, it is a conversation stopper. Indulge me. Deathrights. Yes, the concept may seem rather prickly, unfamiliar, and strange. This part of the story is not vividly described, and I want to offer a 21st century and somewhat clinical perspective to this endlessly rich and very relevant story.
Abraham was the father of pre-need planning, he wanted to be sure there would be no issues with Sarah’s final resting place. So he purchased the Machpelah in Hebron and established the family plot. This was a GIFT, one less detail for Isaac’s family to contend with, at the time of his death.
Details of Isaac’s later years are sketchy, his weak eyes, a metaphor for his inability to see what his twin sons, Jacob and Esau, needed from him. The dramatic events associated with, and leading up to his deathbed vigil, need further exploration.
It is doubtful that Isaac had an Advance Directive, the set of documents that he would have completed articulating and recording, how he wanted to be cared for during the last phase of his life. Isaac did not have access to the life-prolonging medications, technology, and treatment options that are available today.
Isaac probably wanted to be kept comfortable, have his symptoms controlled, be pain free, with loved ones around; without having to deal with family conflicts or unresolved business issues.
Maybe he had Palliative Care services for symptom management prior to his Home Hospice care. 75% of Americans want to die at home, yet only 25% actually get that preference honored.
The Living Will outlines the interventions wanted and not wanted during the last phase of life. Unfortunately, that can come at any age; these documents become effective when we are unable to speak for ourselves.
Who was the healthcare Power of Attorney or surrogate; the individual Isaac designated to speak on his behalf, when he was unable to express his wishes?
- Was it Esau, as the oldest son in this patriarchal society, prior to his birthright being diverted?
- Was it Jacob?
- Was it Rebecca as the wife? Did she have Isaac’s Advance Directive knowledge?
- Did Isaac and Rebecca have that crucial conversation, and share with each other how they wanted to be cared for if they could not articulate their wishes?
- Who had the authority and responsibility, for both healthcare & financial decision making?
- Most states, not all, acknowledge that the spouse has the legal authority to make these decisions.
Isaac had a Circle of Care, the group of individuals who came together to care and support him.
- For Isaac, it was a dysfunctional family, plagued by feuding, deceptive children with unresolved conflicts. His family, like many throughout the generations, contended with favoritism, conflict, and lack of trust.
- These dynamics impacted the communication and interactions with the loved one.
Hopefully, Isaac took advantage of the Medicare Annual Wellness visit and discussed Advance Care Planning with his physician. This preventative health service is without a deductible or co-pay. What a way to save a few bucks! Eliminating cost as a barrier, to this very important conversation.
Hopefully, Isaac got all the benefits of Comfort Care; that is Hospice Care, to alleviate and manage his symptoms of restlessness, agitation, pain, shortness of breath, or other signs of discomfort. No doubt his Palliative Care or home hospice team worked closely with the family to support and comfort them, as they addressed Isaac’s needs.
- It is hard to say whether Isaac was the victim of health care fraud. With all probability, his Medicare or insurance cards were not used inappropriately. Yet the fraud highlighted in the Torah relates to the birthright is well known.
Why am I proving a 21st Century perspective on this Isaac? November is National Hospice and Palliative Care Month. Professionally, I worked with many families having to make end-of-life decisions. Unfortunately, there were too many times where loved ones did not verbalize or document their wishes. This places an undue burden on family members and care partners. This can result in unnecessary conflict between family members who may have competing perspectives and wishes for end-of-life decision making.
The Advance Directive needs to be communicated so that those loved ones left behind should not have to make unnecessary decisions. As mom went through her home hospice journey, she often said: “What do families do without someone with your knowledge and experience?”
There are a number of resources to assist you while coming to terms and thinking about end-of-life wishes. One of my favorites is the Conversation Project from the Institute for Healthcare Improvement (IHI) which is dedicated to helping people talk about their wishes for end-of-life care, for both adults and children. The Conversation Project provides clear information about available options, in many languages.
Another wonderful resource is Death Over Dinner. It can be utilized by a group of individuals who come together over a meal, to explore end-of-life wishes. A family may dedicate the Thanksgiving meal as a time for the senior generation to share their end-of-life wishes and provide a safe space for discussion and clarification. I am happy to help you secure these helpful resources.
Honoring your child, discuss your preferences with your children, share how you want to live during your final days.
- This is especially important if there are estrangements. Unresolved family issues too often resurface at a time of crisis and your wishes may not be honored, if the wishes are not clearly known to all involved.
- For those who are not in traditional relationships, share these wishes and expectations with a friend or partner, I call this honoring a friend. Hopefully, this is a mutual process where you can advocate for each other.
- Having Advance Directive paperwork formalizes the process.
- Advance Directives should be updated and modified over time.
The final phase of life can be a time for blessings, a time to address unresolved family issues, a time to be mindful and appreciate what life still has to offer. A time to put closure on your affairs, the way you want, alleviating that responsibility from others.
Something all of us should and can do, is support a caregiver. Caregiving is challenging, it is an ever-changing demanding role.
- Caregiving typically becomes more demanding and complex as a loved one declines.
- Specific acts of kindness – such as a meal, a ride or running an errand, make the caregiving routine so much easier.
Know your wishes, share them, and unburden your loved ones.
November 2019 is Palliative and Hospice Care Month
Annually in November, Palliative & Hospice Care services are recognized for the vital work done for those in need of symptom management and comfort care. Appreciation and recognition of the unique professionals dedicated to controlling symptoms and providing end-of-life care helps spread awareness. November is a perfect time for individuals of all ages to discuss their end-of-life preferences and wishes, with loved ones and physicians. Take the time to formalize, complete, or update Advance Directive forms, since your wishes may have changed. Do not forget that those previously identified to take on the management of your care and affairs, may no longer be available or capable of assuming the role. New healthcare surrogate and financial power of attorney may need to be named. Consider sharing your preferences and wishes at Thanksgiving with family and friends, providing the opportunity to share your desires and address expressed concerns or anxieties.
Advance Directive Consideration
There are many resources available to help you get started in identifying and expressing your wishes. In reality, for most people, it is not something that can be done over coffee. A bit of soul searching and reflection on how you viewed the experiences of friends and family that have gone through the dying process. Think about what you thought went well, and what made you uncomfortable. How you formulate your individual Advance Directive will be shaped by many aspects including your culture, values, experiences, religion, relationships, and environment.
Advance Directive Resources
- Conversation Starter Kit a resource that is available in multiple languages includes a version for those with Alzheimer’s/dementia and those with a seriously ill child. These resources are from the Institute for Healthcare Improvement (IHI).
- Death Over Dinner that helps you plan a dinner party to articulate end-of-life preferences. “The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity.” The site has a number of versions including an Australian, Jewish and Brazilian edition.
- Five Wishes is a complete approach to discussing and documenting your care and comfort choices. It’s about connecting families, communicating with healthcare providers, and showing your community what it means to care for one another.
- Cake an interactive end-of-life planning website that helps people plan ahead for healthcare, legal, funeral, and legacy decisions. A checklist guides users to create and/or upload important documents (like POLST) that express their final wishes. Users can share secure access to their end-of-life plan with anyone who has an email address. Cake’s mission is to empower everyone to receive end-of-life care that aligns with their values and wishes.
Aging in Place
As you address your Advance Care Planning wishes, remember that aging in place may be part of your plan.
- Consider is your current home going to meet your needs or will modifications be necessary?
- Can the expressed wishes be honored in your current home environment?
- Will you in need of home modification as your condition or your loved one’s condition changes?
- If there are anticipated condition changes, what will need to happen so that you or your loved one can remain at home?
- Have you taken the measures to reduce clutter and minimize trip and fall hazards?
The American Occupational Therapy Association has many resources to help you find the appropriate entity to assist you aging safely at home. In Raleigh, NC consider the services of Designing Independence, they bring clinical expertise to focus on your particular aging in place needs.
Medication Overload, Polypharmacy and Me
A critical issue for older adults is the hidden drug problem of medication overload, also known as polypharmacy. This refers to when individuals use multiple medications and the harm, or potential harm of taking the medications outweighs the benefits. Harm increases with the number of medications taken. “Getting medications right is essential because when your medication is wrong, your mental activity can be off, your mobility can be compromised, and what matters to you will not be front and center.[i]”
What is Polypharmacy?
Polypharmacy is typically defined as taking five or more medications at the same time. Over 40% of seniors are taking five or more prescriptions daily. 20% of seniors take ten or more medications and those with multiple medical conditions may be taking even more than that.
Why is Polypharmacy a concern?
As individuals age, there is a decline or weakening in organ function over time. This means that older individuals, especially those with acute or chronic conditions do not process the medication as quickly, as well, or readily. This places the individual at greater risk of side effects. Cognitive impairment and osteoporosis are two common serious side effects of polypharmacy. When these individuals fall they are more likely to suffer a hip fracture than younger individuals[ii].
“Medication overload will contribute to the premature deaths of 150,000 older Americans over the next decade and reduce the quality of life for millions more.[iii]”
How Can I Lower my Risk of Polypharmacy?
- Keep a complete written record of all medications taken, that includes supplements, vitamins and any over-the-counter medications
- Review the at each provider visit, be sure to ask if you really need to be taking all the medications, ask if there are drug interactions between any of the medications that you are taking
- Fill prescriptions at one pharmacy so that you can your pharmacist has a complete record of all the medications and can intercede with providers if any prescription red flags surface. Be sure to share all the supplements, vitamins and any over-the-counter medications
- Participate in “Brown Bag” medication sessions where you take all of your medications and your supplements, vitamins and any over-the-counter medications and sit with a pharmacist to have a review of what you are taking for side effects and over medication
Polypharmacy is Under Recognized
Medication overload or polypharmacy is the drug problem that is not getting headlines; it is a serious and growing issue impacting the aging populous. Protect yourself and be proactive in minimizing your risks. This problem cannot be ignored as implications to you are high.
Helping Someone Grieving– What Should I Do?
When someone you care about suffers a loss, they need continuing support. Immediately after the loss there are frequently many people around providing food and comfort. Since the loss is fresh in the minds of supporters, they tend to bring the meals of comfort, send texts, notes, and flowers, help with chores, and other gestures of support. This support tends to wane as the time goes on, leaving the mourner at times alone.
Grief is an individual process with its own unique timeline. How an individual grieves for one loss does not predict how they will grieve for a different loved one. As one journeys through Dr. Elizabeth Kubler-Ross’ Five Stages of Grief (denial, anger, bargaining, depression, and acceptance), they are not linear stops, and the grieving person may go backward and forward through the stages several times. The relationship between the individual grieving, the loved one, and the circumstances of death often impact the grief journey.
What was the relationship between the individual mourning and the loved one? Were they happy or estranged? Did they communicate frequently or was there a lot of “unfinished-business” between them? Consider if the death was anticipated and came after a long illness or was the result of a tragic accident. Had the loved one been taken at a young age with a bright future ahead, or had the individual lived a rich and full life?
What other stressors is the grieving individual managing?
- Loss of a different family member or friend in the recent past
- Divorce or loss of a job
- Recent receipt of a terminal diagnosis or other crushing news
- Religious or cultural customs that may not be in alignment for the one grieving and other family members, making this a challenging time
Grieving is a special time for the one who sustained the loss. It is about supporting them, and not sharing our experiences with loss or reframing their thoughts. It is a time to acknowledge the loss and not ask details about the death. Respect privacy and provide a shoulder of support.
- Keep it about the one grieving and the loved one
- Check-in regularly during the first few weeks
- Be there to listen and hold a hand, listen, sometimes silence is best
- Reach out at 3, 6, 9 & 12 months, make a call or send a card
- Acknowledge and reach out at holidays
- Pay tribute – make a donation in their memory, support a favorite cause or charity
- Don’t ignore the existence of the loved one. Mention their name
- Reach out on special dates – birthdays & anniversaries
- Avoid judging, remember that grief is individual with its own timeline
Destress – Stress Management Apps
Caregivers suffer a multitude of emotions and constantly deal with stress. Emotions may include anxiety, sadness, depression, hopelessness, and despair. Stress and anxiety, result in loss of sleep, compounding muscle tension, and a negative state of mind. Caregivers are often faced with 24/7 responsibilities. Many caregivers report that they are constantly juggling and dealing with family members who are not fully supporting them. Self-care is critical for continued well-being, staying balanced, and being able to continue caregiving responsibilities.
Many caregivers do not have the time, energy, or resources to take advantage of professional counseling. So what can a caregiver do to decrease stress with limited time, energy and funds? There are a number of stress management apps that can help individuals better manage some of the anxiety in their lives. There are apps for general stress relief, meditation, sleep, and others that support general health and wellbeing. Some of the apps are free; others have a modest fee or an associated in-app purchase.
Breathe2relax – Stress management tool, provides detailed information on the effects of stress on the body, instructions and practice exercises to help users learn the stress management skill called diaphragmatic breathing. Developed by The National Center for Telehealth and Technology, originally targeted to military veterans. Free.
Calm – Focuses on helping you calm the senses; doubles as a sleep aide since one of its features is comprised of soothing adult bedtime stories. Free trial and a subscription.
Headspace – General guided mediation is free; access to more specific meditation involves a subscription.
Stop, Breathe & Think – Check in with your emotions, mindful breathing, and meditation exercises. There is a version for educators working with students of all ages. Free trial and a subscription.
It is important to remember that apps are not a substitute for seeking professional mental health care.
Consider your stress management needs and goals; try several apps until you identify the app that will augment your self-care practices, and help you focus on managing your stress.
Palliative Care – A Top Priority
The need to make quality palliative care services available across the United States is growing. The number of Americans living with serious illnesses increases annually. Palliative care is expert medical care for individuals with critical illnesses focusing on addressing symptom and stress management of a serious illness. Palliative care services are offered concurrently with other medical treatments. The goal of palliative care is improving the quality of life for patients and family members. One does not have to be enrolled in hospice to take advantage of palliative care services.
- There are over 12 Million adults & 400,000 children living with serious illnesses
- 72% of hospitals with greater than 50 beds have palliative care programs
- 66% reduction in symptom distress is reported by palliative care patients
- $3.5 Billion per year savings is possible with nationwide implementation of palliative care programs
Meeting the Need
Hospitals and physician practices are moving towards value-based reimbursement. They are expanding and redesigning palliative care programs. A key component of this process involves improving access to these symptom management services. Healthcare providers are recognizing that palliative care programs are essential to a patient’s wellbeing. They are encouraged to offer palliative care services more aggressively to better meet patient symptom management needs.
Individuals with advanced chronic conditions including heart failure, COPD, dementia, cancer patients most frequently benefit from these services. One should always ask if their particular situation would benefit from palliative care services.
Common symptoms addressed by the palliative care service include shortness of breath, pain management, nausea, vomiting, fatigue, anorexia, depression, and anxiety. Symptom management approaches are customized to meet the patient’s individual needs and modified as the condition changes. The goal is to keep the individual as comfortable as possible.
Where is Palliative Care Provided?
Palliative care services anywhere ever the patient is; in the hospital, skilled nursing facility, nursing home, assisted living or home.
How to Get Palliative Care Services?
Speak to your healthcare provider to determine if you or your loved one’s clinical condition would benefit from palliative care services. Your provider will advise you of locally available palliative care options. Access to palliative care services may be limited by your geographical location, choice of providers may be restricted by your insurance provider. Should you encounter any difficulties, speak to your insurance company’s customer service department to identify a provider.
Speak UpTM to Prevent Falls
The Joint Commission’s (TJC) award-winning Speak Up™ program has a new initiative focusing on fall prevention. Falls happen at home, out and about, in nursing homes and hospitals. Falls happen for a variety of reasons including loss of balance, tripping or slipping. More than one in four adults over 65 years of age falls annually. Falling once doubles the chance of a repeated fall[i]. The Centers for Disease Control and Prevention (CDC) anticipates seven deaths each hour from falls by the year 2030[ii]. The average cost of a fall with injury is estimated at $14,000. That does not take into account the impact on the individual and the fact that unfortunately, not all recoveries are complete. Falls are a real life-changing issue impacting a growing percentage of the population. There are actions that can be taken to decrease the risk of falls and injury.
The senior population is growing and these individuals want to maintain their independence. Women have a 50% greater fall risk than men[iii]. Having an alcoholic drink a week or taking five or more medications and also managing diabetes or osteoporosis increases the risk of falls[iv]. Other medical conditions contributing to an increased fall rate for seniors include angina, stroke, asthma, COPD, chronic kidney disease, arthritis, depression, and dementia[v].
If you or your loved one has had a fall (with or without injury), contact your provider to discuss and determine if any clinical intervention is needed. Do not ignore a fall, it could be a warning sign! Get checked out before a serious life-changing injury happens.
Remove trip and slip hazards, check your footwear, have your vision checked, address any necessary home modifications needs and explore if an automatic fall response system may be appropriate for you or your loved one.
The Joint Commission has a new patient safety campaign Speak UpTM to Prevent Falls that provides information to patients and their families/caregivers on how to prevent falls and become more active in their health care. Check out the video and determine what steps and precautions you need to take to reduce the chance of falling.
Hand-out on a variety of actions to take To Prevent Falls. Print and use as a checklist. Share with a friend. https://www.jointcommission.org/topics/speak_up_to_prevent_falls.aspx
[i] Stevens, J. A., Balesteros, M. F., Rudd, R. A., DeCaro, E., & Adler, G. (2012). Gender differences in seeking care for falls in the aged Medicare population. Am J Prev Med.,43, 59-62.
[i]Centers for Disease Control and Prevention (CDC). Important facts about falls. (n.d.). Retrieved August 8, 2019, from https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html
[iii] Centers for Disease Control and Prevention (CDC). Important facts about falls. (n.d.). Retrieved August 8, 2019, from https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html
[iv] Harvard Health Publishing. (2015, April 15). Why do women fall? Retrieved August 8, 2019, from https://www.health.harvard.edu/womens-health/why-do-women-fall
[v] Paliwal, Y., Slattum, P. W., & Ratliff, S. M. (2017, March 28). Chronic Health Conditions as a Risk Factor for Falls among the Community-Dwelling US Older Adults: A Zero-Inflated Regression Modeling Approach. Retrieved August 8, 2019, from https://www.ncbi.nlm.nih.gov/pubmed/28459060
Speak UpTM About Your Care
The Joint Commission’s (TJC) award-winning Speak Up™ program, launched in 2002 has been used in more than 70 countries. It encourages patients and family members to speak up and be advocates for their healthcare. It is an important element of keeping patients patient safe by encouraging active participation in healthcare services. Important information that is appropriate to use in all interactions with members of the healthcare team.
- Speak up
- Pay attention
- Educate yourself
- Advocates (family members and friends) can help
- Know about your new medicine
- Use a quality health care organization
- Participate in all decisions about your care
These elements are reminders about how to be an active participant in your own healthcare and an advocate for your loved one’s healthcare services. They are practical and based on science. Try them out on your next interaction with a member of the healthcare team.
The short video is a useful step-by-step example and a reminder of how to use SPEAK Up™.
What Was The Most Helpful Surprise?
The Cambridge English Dictionary defines a surprise as “an unexpected event, or the feeling caused by something unexpected happening.” Often the experiences of caregivers more closely match the Merriam-Webster definition of a surprise, “an attack made without warning.” As a caregiver, too often the focus is on the unanticipated crisis or the unexpected decline of our loved one. At times, the attack without warning is the daily caregiving ritual.
The caregiver is the project manager! The individual who has taken on the role of keeping the home going, tending to the loved ones physical and emotional needs, managing medications, treatments and supplies, paying the bills, doing the wash, and all the other unglamorous activities that must get done. The stress a caregiver endures while caregiving for a loved one has long term physical effects. As family and friends of caregivers, there are specific things that you can do to bring an unexpected smile, and relieve some of the caregiving stress.
The “Polite” Offer
Too often caregivers are asked: “What can I do to help?” Sometimes it is a genuine offer and other times it is perfunctory one; similar to “Let’s get together for lunch.” The lunch meeting never actually takes place since it was a “nice and hollow” gesture. Caregivers have too many decisions to make and it is not always easy to stop and run through the “wish list” and come up with an item that matches what the requestor likes or is able to do.
Seasoned caregivers may have a task or laundry list for just such questions, it may resemble: Please help with the following:
- Pick up the following from the supermarket
- Take out the trash cans on garbage day
- Mow the lawn
- Take the car for an oil change
- Fold a load of wash
- Make a meatloaf (or another much-desired entrée)
- Sit with my loved one while I go to the hairdresser
The Unexpected Surprise
I often ask caregivers what was an unexpected and welcomed surprise that made a difference for them. The overwhelming majority of responses related to not being “forgotten” by friends and family. Despite not being able to physically participate in their usual social activities, knowing that someone genuinely cares about them, and took the time to express their thoughts made the difference. Some caregiver responses included: getting a greeting card regularly, finding a meal or flowers at their doorstep. The fact that someone went out of their way to do that “act of assistance” without being asked made the difference.
Caregivers, please share “What was the most helpful surprise” that someone did for you. Friends and family of caregivers, take note and see how you can give a caregiver a wonderful and much-needed surprise.
What Made Me Smile Today?
Opportunities to smile while caregiving tend to be few and far between! Often, we focus most on what is not going well! The decline in our loved one’s status is easy to see. We can quickly list the things that our special person can no longer perform or enjoy. The effects of chronic illness and the decline in status are heartbreaking. Your loved one may experience: not being able to walk, losing bowel and /or bladder control, unable to recognize family members and friends, forgetting important information, no longer enjoys activities, and the list goes on.
Changing the focus for the caregiver is not easy; it is a bit like “Is the glass half full or half empty?” Should the caregiver focus on all the challenges and decline in their loved one’s status or focus on moments of joy and levity? Caregiver “survival” is critical if that special person is going to survive, and then thrive, after the caregiving role has been completed. Smiling is a basic cross-functional form of expression a way to connect when words cannot. The act of smiling has health benefits! Smiling improves mood, may ease anxiety and depression by releasing endorphins, lowers blood pressure, boosts the immune system and can reduce pain. People who smile impact those around them in a positive way, it’s contagious. There is a whole body of science relating to the health benefits of smiling.
How To Smile While Caregiving?
Finding a smile or two in the caregiving process is not a reflection on the loved one, rather the situation and the funny things that may be said, the unexpected joke or situationally funny remark. Unintentional antics ease the tension for both the caregiver and loved one, if they are able to appreciate the situation. For some, giving funny names to parts of the day or tasks to be performed can lighten the mood and set the stage for a bit more levity. Respecting the loved one is always the first priority. Hold on to the humorous moments they are sustaining especially when times are trying. My mom couldn’t remember the name of our local grocery store, Harris Teeter’s, so she gave it the name Teeter-Totter, which has stuck with us. It brings a smile to me and my husband whenever we say it.
- Smile as you wake up, greet others with a smile
- Focus on the positive
- Keep a notebook of funny things and wonderful surprises that happened while caregiving. When times are tough, go back and reflect on the happier time
- Find joy in the little things. Focus on something that went well during the day; it could have always been worse!
- Note something that you are thankful for
- Start your morning or end your day by looking at the comics
- Sign up for a “joke of the day”
- Watch a funny movie
- Connect with others, be sure to ask if they had something funny or unusual happen in their day
- Find the energy and perform a small act of kindness for someone else, it will come back in spades
- Be kind to yourself; recognize that you are doing a difficult and stressful job. Eat well, stay hydrated, have a treat now and then, do something nice for yourself, sing a funny song, take a few minutes to listen to music, read or do whatever brings you joy and smiles
Bam! – You Are Now A Healthcare Surrogate
Your loved one or friend has named you as their healthcare surrogate; the individual who will authorize medical care and treatment, and make all necessary healthcare decisions should the loved one become incapacitated due to illness. This role comes with extensive responsibilities, to ensure that you are acting in accordance with the individual’s wishes and in their best interests. You need to think not of your wishes, but what your loved one would want. If you have any reservations or concerns about performing the role, the reservations must be addressed promptly. Your loved one must have peace of mind knowing that whomever they appoint as their healthcare surrogate will act in their best interest, and do so with no reservations.
It’s Not About You
It’s not about the healthcare surrogate; it’s all about ensuring the best interests for your loved one. Always try to look at things through your loved one’s eyes. Don’t just do what you would do if you had this illness or condition. Don’t let your distress about what is happening with your loved one result in you tell the doctors to do something that you know your loved one would not want.
Think about their medical condition, and how they would want to be treated. Hopefully, you have discussed their wishes and preferences before a crisis situation surfaces, so you already know what are your loved one’s preferences.
Realize that there may be another representative appointed to address the non-healthcare and financial interests of the loved one. Critically consider if you can work collaboratively as healthcare decision maker with the other individual named to protect the financial welfare of the loved one. A disservice will be done to the loved one when the healthcare and financial surrogates cannot collaboratively ensure that the loved one’s wishes are followed.
Be Prepared For The Role
At the time of being named as a healthcare surrogate, you need to know your loved one’s medical status.
- Discussed your loved one’s wishes and have a clear understanding of their end-of-life preferences
- Have a copy of the Healthcare Surrogate form
- Named on HIPAA Privacy Notices that the loved one has completed at each of their medical providers
- Does the person have any ongoing medical issues, such as chronic conditions?
- Does the person have any allergies (to medicines or to other things)?
- Is the person currently taking any medicines or receiving any medical treatments? What medicines or treatments and for what purposes?
- Are there any drugs or medical treatments that the loved one would prefer not to receive, and why?
- Meet/get to know the financial surrogate if applicable. Exchange contact information
Many times the healthcare surrogate assumes the role to address end-of-life care. This typically happens when there is a crisis situation and quick decision making is needed. This is the time when knowing and following the loved one’s advanced directive and planning wishes takes center stage.
- Does your loved one care more about living as long as possible (even if that might mean some physical discomfort), or being as comfortable as possible (even if that might mean a shorter life)?
- Does your loved one want to be at home at the end-of-life, or would the loved one prefer to be in a hospital or professional care setting?
- Does your loved one have religious or spiritual values that will affect the types of care or treatments he or she would like to receive?
- Are there specific life-support treatments that your loved one knows he or she would like to receive or would not like to receive?
- Would your loved one like to have a palliative care team or hospice team care for him or her at the end of life?
- Are there other wishes that should be observed as your loved one nears the end-of-life, such as calling a religious leader to come visit the person, having certain music playing, or having certain friends or family members in the room?
The Job Description
Key responsibilities and duties of the healthcare surrogate (there is always something else you may have to address). There may be some modifications to the role based on State statutes; the following is a general guide:
- Make decisions that are in accordance with your loved one’s wishes including religious and moral beliefs, if those wishes are known
- Make decisions based on the patient’s best interests, if the patient’s wishes are not known
- Diligently consult with physicians and other health care providers regarding medical care, including medical tests, medicine, surgery or end-of-life care
- Provide informed consent on in matters of medical intervention
- Apply for Medicare, Medicaid, or other programs or insurance benefits on your loved one’s behalf to help pay the cost of health care
- Manage the admittance to or transfer from health care facilities, including hospitalization, rehabilitation center, nursing home, home health care or hospice
- Authorize access to your loved one’s medical records for healthcare decision making
- Authorize release medical records to third parties
- Authorize decisions regarding autopsy, organ and tissue donation
- Request or decline life-support treatments
- Choices about pain management, including authorizing or refusing certain medication or procedures
- The option to take legal action on the person’s behalf in order to advocate for his or her health care rights and wishes
Your Spokesperson – Your Champion
Who will speak for you?
Designating someone to serve as your representative to make healthcare decisions for you, if you are unable to make them yourself, is an important activity. The designation of this role is a key component of Advance Care Planning (ACP). Determining who that champion of your medical decision making should be when you are incapacitated requires some thought. Often a spouse or partner is the obvious choice. Hopefully, these individuals know your wishes and will do whatever it takes so that your wishes and interests about medical care, treatment, or no treatment will be honored. In the absence of a spouse or partner, consider naming your adult child or a trusted friend for the task. Remember, whomever you choose to serve as your healthcare surrogate/proxy, they will be an integral part of your circle-of-care.
When no one can speak for you…
In the absence of a named healthcare surrogates, healthcare power of attorney, or healthcare proxy (similarly known documents) most states have a hierarchy of who will take the responsibility for making your healthcare decisions. A guardian may be appointed by the Courts in the absence of a family member or trusted friend who knows your wishes. A guardian may also be appointed in the event that there are concerns in how the healthcare surrogate is making decisions relating to your healthcare needs. Typical situations where guardians are named include the healthcare surrogate not following your wishes or making decisions that are not in your medical best interest.
A healthcare surrogate has been identified
Once you have identified the individual who will be serving as your medical champion, verify that they are willing and able to take on this responsibility. Once you have their confirmation that they are willing to take on the role, it is necessary to complete the appropriate forms designating your wishes. Healthcare surrogate/proxy forms can be obtained free from your physician, hospital, State Agencies, or may be obtained from an attorney as part of your Advance Care Planning packet for a fee. Most states require that the forms be notarized.
What to do once the surrogate has been identified:
- Inform the individual that they have been named and get their agreement to be the surrogate
- Provide a copy of the form to the healthcare surrogate/proxy so that they can present it in an emergency to help in ensuring your wishes are respected
- Provide the healthcare surrogate/proxy’s name and the individual’s contact information to all your healthcare providers
- Add the Healthcare surrogate/proxy to Privacy Notices that you are asked to complete and acknowledge with medical providers. Without this information, they may be unable to communicate your medical condition and information on your behalf
- Keep that healthcare surrogate/proxy’s name and contact information with you in your wallet and provide with any medical reports or information
- Keep a copy of the Healthcare surrogate/proxy form readily available; do not place it in a safe or bank vault that might not be accessed in an emergency. The form must be handy in the event of a medical emergency. Some individuals keep a copy on their refrigerator, a common location that EMS will check for such documents
- Upload your healthcare surrogate/proxy document to your state’s registry (if available)
The healthcare surrogate can be changed
The designation of a healthcare surrogate/proxy may be changed. This can occur if you feel that the initially appointed individual is not able to act in your best interest, or is no longer able to fulfill the role. If that is the case, you will need to thoughtfully identify a new healthcare surrogate/proxy, complete new a new form, and diligently go through the steps with your providers to update the surrogate designation and privacy forms. The outdated contact information and forms should be removed from wallets and replaced with the new information.
A future blog post will address the role of the healthcare surrogate.
Typically when hearing the phrase “Unfinished Business”, the first thought is that of a work or household task that has not been completed. You may have been called away, distracted, or interrupted and did not have the opportunity to complete the job. Yet there is another meaning to the phrase “Unfinished Business” that goes beyond tending to the outstanding tasks (incomplete personal and work projects) and encompasses the spiritual distress associated with relationships, unresolved matters from the past, and may not be religious in nature.
As an individual’s physical status declines, they have lower energy and concentration levels, and may not be able to focus on managing their outstanding issues. This makes addressing “Unfinished Business” a priority for family and caregivers who work with those in declining health.
An approach to addressing “Unfinished Business” is by asking your loved one:
- Is your “Unfinished Business” going to be a surprise or a burden to someone you love?
- If you had an opportunity to say something to your family member, what would it be?
- How are your spirits holding up through all of this?
- What is like to be you right now?
Your loved one may ask you for guidance and assistance with some of their concerns.
Depending on the circumstances that have led to the individual’s physical decline, there are various types of questions that people ask themselves and others, as they realize their time is limited. In many cases, there are no real answers, yet these questions drive home the point that opportunities should be provided for the loved one to put closure on their “Unfinished Business.”
Loved Ones Questions
Questions your loved one may ask that provide some insight as to concerns about their current status or legacy:
- Meaning: How do I explain this to my kids?
- Purpose: I feel so useless.
- Suffering: Why is this happening?
- Connection/Legacy: Will my kids remember me?
- Permanence: Will I live on in some way?
- Coping: How am I going to get through this?
As a family member, friend, or caregiver you need to be prepared for such questions and provide the loved one an opportunity to share their thoughts and feelings without being judged. Avoid the temptation to dismiss having this emotionally charged conversation; remember that it is not about you, it is about the loved one having the opportunity to put closure on their issues and concerns. Additional support and assistance may be obtained through clergy, hospice staff, social workers, nurses and individuals that the loved one trusts and values.
Advanced Care Planning- The Gift of Love
National Healthcare Decision Day
April 16 is National Healthcare Decision Day is an initiative to encourage individuals to express their wishes regarding healthcare. Sharing your wishes relating to end-of-life, should not take place during a crisis. Additionally, the discussion is not reserved for those in retirement.
A medical crisis could leave you unable to make your own healthcare decisions. The discussion should take place early in life. Your views relating to end-of-life care and preferences are shaped by many factors including culture, religion, ethnicity, educational level, beliefs, family customs, income, environment and exposure to those who are chronically ill or dying.
The importance of younger adults considering their end-of-life wishes cannot be understated. Younger adults have a lot at stake. If stricken by serious disease or accident, medical technology may keep them “alive” for decades. Some of the most well-known “right to die” cases resulted from young individuals, incapacitated by tragic accident or illnesses and maintained on life support.
Advance Care Planning
Advance Care Planning (ACP) is a framework to help you think about the various plan components, discuss and decide what is right for you, document and share your wishes. Then periodically review your wishes to determine if any changes need to be made. You should determine who will be your Healthcare Champion (Surrogate), the individual who respects your wishes and will speak on your behalf if you are unable to do so. Empower this person by completing a Durable Power of Attorney for Healthcare Decisions also known as a Healthcare Proxy document.
When you document your end-of-life wishes, it is vital that you share them with your surrogate and loved ones. Your surrogate should have the opportunity to seek clarification from you and not be surprised at a time of crisis by your wishes. This provides you the chance to validate that your wishes will be respected.
Advance Directive Considerations
When thinking about your Advance Directive there are several important questions to consider:
- What is important to you?
- What do you want to happen?
- What do you want not to happen?
- Who would speak for you?
There are wonderful free resources to assist you in opening the discussion with loved ones, and helping you to define your wishes. Many of these resources are also available in a number of foreign languages.
Updating and Ensuring Availability of your Advance Directive
Your Advance Directives can always be modified. It is a good practice to review your wishes every year or so, and when there is a major change in health status. Updated documents need to be shared with the Healthcare Champion (Surrogate), your physician (medical team), and uploaded to a registry if available in your state. Avoid placing such documents in a safe deposit box as they will not be accessible if the bank is closed. Consider uploading to your smartphone for back up.
The Caregiver Match
Caregiving is like dating
I often share that finding the right caregiver is like dating. There needs to be a comfortable connection between the loved one and the caregiver. The circle-of-care members (family and significant others) must also feel at ease with the hired caregiver. Getting to that point can be painful and frustrating; just know that there is a caregiver match for every loved one!
Finding the right match involves the “personality” component and a “skills” portion. However, addressing each of the caregiver components for a match is critical for a safe, respectful and lasting caregiving relationship. If there are questions or concerns relating to a caregiver, never settle; don’t make do with a hired caregiver. There must be both a personality and skills match. Above all, you always have caregiving options (caregivers may be hard to find at times). As a member of the circle of care, you must be assertive and protective of your loved one. Remember, not all caregivers are the same.
For some loved ones, addressing the personality component may be more difficult. Consider the highly educated individual with lots of professional affiliations and hobbies who may be physically limited, yet is used to very stimulating discussion and is unable to re-channel the energy and thoughts in other ways. Can the caregiver adapt their individual style to listen and ask questions, or do they show disinterest and disregard for your loved one?
There are those caregivers that are more comfortable tending to the mechanical care aspects and prefer limited verbal communication with the loved one. On the flip side, there are those caregivers with the “warm and fuzzy” personality who can engage the loved one, however, they are not as focused on the caregiving mechanics. The challenge is finding the right balance of engagement and caregiving mechanics. Find the individual who has both a head and heart while caring for your loved one.
- Appearance – Uniform: was the caregiver working elsewhere (in the same uniform) prior to coming to care for your loved one? Was that individual working at a daycare center during flu season or with others who may have an illness that could be spread? Safety of the caregiver is paramount. Paid caregiving is done with closed toe shoes for the caregiver’s protection. Flip-flops or open toe shoes should raise
- Long acrylic nails – The issues of infection control and acrylic nails is well documented. Long nails and fragile skin do not mix. The risk of skin tears is real, and skin tears often come about when holding or repositioning a loved one. You want to minimize injury from nails or jewelry that could unintentionally harm your loved one.
- Correct use of equipment – Knowing how to use the medical equipment correctly seems basic, yet there are many different models of the devices and supplies used to care for a loved one (glucose monitors/pumps, pressure mattresses, CPAP, wheelchairs, mechanical and electrical beds, etc.) Is your caregiver experienced with the medical equipment, or can they receive training?
- Getting up and moving – Falls are a common cause of injury to loved ones as they decline. Often the loved one does not realize or want to recognize, their declining physical status. The caregiver needs to be proactive in responding to that change in status. Often gait belts are used as a safety precaution. If the item has been prescribed, it is imperative that the caregiver ensures its use. Concerning comments made by a caregiver about to walk a loved one that should raise concern include: “I have him” or “I can catch her” pose a risk to both the loved one and the caregiver.
- Follows instructions – It is important that the caregiver follows the plan of care. If the caregiver raises concerns or questions about the loved one’s status, those concerns need to be addressed and the care plan updated. Unfortunately, there are some caregivers who believe that they know what is always best for the loved one and disregard the professional recommendations to the contrary. Situations that should raise a concern, include giving the loved one food they may want, but are unable to tolerate or eat safely, getting the loved one out of bed or walking them when the loved one truly does not have the physical strength and ability. These types of situations place your loved one at risk.
- Receptiveness – Be aware of how the caregiver responds to simple requests and sharing of the loved one’s preferences. When resistance to care plan modifications are expressed or observed, explore the reasons further, and determine if this individual can continue as a caregiver. Be sure the caregiver feels valued and appreciated, and thanked for the activities performed. Remember that the goal is ensuring that your loved one’s needs are well taken care of. If the “I know better than you” attitude is consistently displayed, this individual may not be the right caregiver for your loved one.
- Shares updates – The majority of caregivers are very good about sharing observations and changes in the loved one’s status. That comes from building a relationship. This is a vital practice to promote and encourage. Often the caregiver will clue you into issues and concerns that a loved one may have and not be sure how to address it with you. If your caregiver is not sharing, ask for updates and let the caregiver know that you value their opinion and insights, and would like that communication.
Respecting the preferences of the loved one, and asserting for their needs is not easy. Don’t be shy. If you don’t do it, who will? Loved ones are vulnerable, their welfare and safety must be the primary goal and focus.
#palliativecare, #palliative, #hpm, #homehealth, #compassion, #eol, #caregiving
Simplifying Complex Care for Older Adults
Mary Tinetti, MD is the Chief of Geriatrics at Yale School of Medicine and Yale-New Haven Hospital, and co-chair of the advisory group for Institute for Healthcare Improvement (IHI’s) Age-Friendly Health Systems. At its core, an Age-Friendly Health System looks to optimize value for your loved one, the family, caregivers, and the healthcare system. An Age-Friendly Health System is looking for a win-win solution for everyone involved. Dr. Tinetti identifies the keys to providing the best care possible for older adults.
As individuals age, they amass more clinical conditions that become more complex over time. Seniors are individuals and it is important to remember each person’s outcomes, values, and desires are unique; they cannot be generalized. The healthcare team must recognize this individuality, and respond to the person’s specific needs, interests and priorities. When providers generalize or don’t take into account the variability of seniors, then there may be unintended care consequences.
The “4Ms” is a part of an age-friendly approach focusing on improving the care that is complex and helping to make it more manageable. Regardless of the condition, the number of functional issues, culture, ethnicity or religious background, the “4Ms” are applicable.
- What Matters — Acknowledges that older adults vary in what matters most to them about their health, and their health care
- Medication – The number, types, availability/access, tolerance
- Mentation — Mental activity. This includes the “three Ds” of the 4Ms (depression, dementia, and delirium)
- Mobility – How well is the individual able to get around
It is important for clinicians to examine each of these areas (What Matters, Medication, Mentation, and Mobility) collectively for each individual at every interaction.
These “4Ms” are intricate issues that are related to each other. They provide insight into some of the challenges associated with managing complex conditions. Common chronic conditions include Parkinson’s, dementia, diabetes, heart failure, and renal disease. When multiple serious chronic conditions coexist, the intricacies of clinical management become more challenging. It is important to remember that each individual is unique, and each person responds in their own special way.
Share with your provider
- What’s important to you from a health perspective, how you “like” to live, needs, what you value, and your Advance Directive wishes
- All medications that are taken; including over the counter, vitamins, supplements, creams, and prescriptions from other providers. Do not assume that one provider has a complete list of all the medications that are being taken
- Feelings, being sad, “feeling blue”, forgetfulness and any strange new or unusual emotions
- Any changes in the ability to “move”, includes changes in walking, being able to get out of bed, chair or tub, climb stairs, change in range of motion or ability to pick up items
Individuals and caregivers should remember the IHI’s Ask Me 3: Good Questions for Your Good Health that should be asked during each provider visit.
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
The Ask Me 3 questions help you to focus on the important issues that are affecting your condition at a particular time. These questions become a nice introduction to the “4Ms” that providers are beginning to utilize in care management. You are encouraged to use the “4M” as a means of reminding the provider of your “uniqueness,” and desire for the best possible care. Open the provider discussion to the “4Ms” if the provider has not done so, as they tie in nicely with any treatment, or medication change made. These questions and approach encourage and assist in improving communication with the provider. They are a framework for better understanding of the proposed treatment or medication.
Insensitivity to Caregivers Stings
Caregiving is often a 24/7 role, and as the loved one declines the caregiving responsibilities increase. The physical and emotional toll of watching a loved one decline coupled with the increase in caregiving demands, lack of sleep, change in routine, and added responsibilities can result in a very stressed caregiver with fragile emotions. Some caregivers experience “role reversal”; activities and responsibilities that were once performed by the loved one now fall to the caregiver to address, in addition to all the other caregiving duties. There are many individuals who have never cared for a chronically ill person or a loved one who is experiencing memory loss, thus increasing physical limitations and have no appreciation for what goes into caregiving.
The Caregiving Reality
For many, caregiving activities involve some degree of bathing, toileting, grooming, feeding, assisting with walking or moving into a chair, meal preparation, medication administration, dressing changes, therapies, and keeping the loved one safe. In the event that the loved one does not sleep or requires assistance with repositioning, toileting or medications at night, that results in the caregiver is not getting sufficient rest, therefore, putting their health at risk. Beyond the physical activities associated with caregiving, the caregiver still must keep the household going. Additionally, the tasks of shopping, laundry, bill paying, house cleaning and maintenance, and potentially working, can all represent functions that caregivers must address and worry about.
Although friends and family are well-meaning, they don’t always have a behind the scenes appreciation for what the caregiver is doing or experiencing. It is important to realize that remarks or questions can be interpreted by the caregiver as inappropriate, rude, demeaning, stupid, devaluing or insensitive. When stressed caregivers are tired and frustrated, they often experience heightened sensitivity to criticism. Individuals who do not know what to say, or don’t think through the implications of their remarks are unaware of the lasting impact of what they have said to a caregiver.
Particularly stinging are comments relating to the mood of the caregiver such as “cheer-up”, “Why are you struggling?”, “you look tired/worn out”, “you should not have to provide the care”, “put your loved one in a facility”, “your loved one does not even know/appreciate what you are doing for them” depict the type of comments that leave caregivers upset and frustrated.
To be supportive of caregivers
- Acknowledge what they are doing
- Acknowledge that the role is stressful
- Make a reference to something they are doing that is making a difference for a loved one
- Offer words of encouragement such as:
- What you are doing is important
- You are making a difference for your loved one
- Your loved one is lucky to have you
- You have a very special relationship with your loved one
- I admire what you are doing
- I support the effort you are making for your loved one
- I would be honored/lucky to be cared for like you are doing
- Smile & give a hug
- Offer specific assistance – Bring a meal, do a chore, run an errand to lighten the load of the caregiver
- Making judgements about their caregiving role
- Criticizing what they are doing
- Talking down or treat the caregiver or loved one as a child
- Making the conversation about the non-caregiver and their experiences
- Referencing a future reward for their caregiving responsibilities
- Comparing caregiving experiences, each is unique yet there are commonalities
Consequently, caregivers who are at the receiving end of insensitive remarks have the choice as to how they respond. There may be times that ignoring or not responding to the comment is best, hence the individual runs the risk of focusing or dwelling on the insensitive remark and having it impact the relationship. Responding calmly is an art. Sharing that the comment was hurtful or insensitive, along with the feeling evoked may help avoid future hurtful comments. There may be individuals the caregiver wants to engage in addressing the specifics of a comment that could result in brainstorming or specific requests for assistance and support.
If you know a caregiver, go out of your way to do something special for them, lighten the burden that they are carrying. You will both feel better after your act of kindness has been received. Check out Home Hospice Navigation: The Caregivers Guide for additional suggestions and resources.
End of Year Personal Report Card
As the year draws to an end, this is a time to review the year from a variety of perspectives. Often, an individual’s financial health is the one area that gets the most focus. Evaluating the status of investments, retirement contributions and making last-minute donations to charitable organizations are the top areas of attention. Some individuals take advantage of funds left in their Flexible Spending Account (FSA) and get needed dental work, glasses or other medical services that have been delayed.
Financial health, and physical assessments and treatments, are not the only areas to address. A key area is a review of your Advance Directive paperwork, this is crucial for individuals of all ages as serious accidents or illness can occur at any time of life. Consider:
- Do you have an Advance Directive?
- Does your Living Will reflect your current wishes?
- Have you had a health crisis since outlining your wishes and your forms need modifications?
- Are your choices of Healthcare Surrogate and Financial Power of Attorney still appropriate?
- Are those individuals still able to carry out your wishes?
- Are any home modifications needed to remain safe, and age in place?
- Do you need to purchase Long Term Care Insurance?
- Do you need to self-fund for long term care needs?
- Is your Last Will & Testament up to date and reflect your current wishes?
Resources for Advance Directives include The Five Wishes, Death Over Dinner and The Conversation Project. The holidays are a great time to share your wishes with family, allay their concerns and address any questions that surface. Having your family around to hear from you directly what your end-of-life wishes are, and how you want to be cared for when you are unable to share your care wishes, is a gift. It often is a very hard gift to share, due to the emotions associated with recognizing that you are sharing how you want to live while dying. Once shared, you will experience peace of mind and know if there are any issues between family members that need to be resolved.
Thanksgiving has become the time to show appreciation and celebration of family, health and good fortune. Expressing gratitude when caregiving, can be very challenging, especially as a loved one is declining physically and mentally. Too often we become focused on what has been lost physically, mentally and emotionally; that we fail to recognize that there are still things that we should be thankful and grateful for. Being grateful refocuses us, on the positives we encounter. At times we fail to recognize the simple gestures extended to us, it may be a friend who calls or sends regular greeting cards, someone who brings a meal or assists with a chore or task that we are unable to perform. The acts of “goodness” and kindness, expressed towards us are humbling; they stop us forcing us to acknowledge that we have “forgotten” to appreciate the goodness around us. On this Thanksgiving take the opportunity to reflect on all that is good and kind around you, reach out to someone, return the kindness and acknowledge them for what they mean or do for you. May this be a time of blessings for you and your loved one.
November is known as Palliative Care & Hospice Care month. A time to recognize the professionals dedicated to symptom management and end-of-life care. This is also an important time for individuals of all ages to discuss their end-of-life preferences and wishes with loved ones and their physician. Take the time to complete or update Advance Directive forms. Consider sharing these preferences at Thanksgiving with family and friends, providing the opportunity to stress your desires and address concerns.
Resources to assist you in the discussion process include Conversation Starter Kit a resource that is available in multiple languages, includes a version for those with Alzheimer’s/dementia and those with a seriously ill child. These resources are from the Institute for Healthcare Improvement (IHI). Another valuable resource is Death Over Dinner that helps you plan a dinner party to articulate end-of-life preferences. “The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity.” The site has a number of versions including an Australian, Jewish and Brazilian edition.
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Coming to the realization that additional caregiving assistance is needed may be obvious to some and very challenging for others to realize. The need for more caregiving support affirms that the current caregiving plan is not meeting the changing needs of the care recipient. Some view this need for additional assistance as a very difficult and painful realization that they are not able to fulfill all the care needs of the loved one.
How to find a caregiver? Just like dating, ask for a referral from a trusted friend, colleague, spiritual advisor and anyone you come in contact with. Caregivers are typically not free, so be sure you have a realistic budget and recognize that as an individual declines, usually additional caregiving hours are needed. There are “dating services” also known as non-medical homecare agencies and registries to assist in the caregiver identification process. Be sure to ask about the background checks and screening processes used. No matter how you find the “professional” caregiver, they need to be the “right” match for the care recipient and the circle-of-care at the bedside. Whenever possible, speak directly with someone who has hired this individual to gain first-hand insight about them and their abilities.
Try to meet the individual prior to the initial caregiving session if possible. This is the time to determine if the potential caregiver is the “right fit” for the care recipient. What is your “gut” reaction when you meet the individual? Do you have reservations or concerns? Consider, personality, temperament, willingness for the assignment, physical ability to meet and perform the care needs, availability to provide the hours needed (do they have other individuals for whom they provide care and you will need multiple individuals to cover the hours?) Can the caregiver easily communicate, and able to understand the wishes of the care recipient? Can the care recipient easily follow the instructions of the caregiver? Be sensitive to communication challenges. Are there cultural, ethnic or religious aspects that need to be clarified? If your loved one has special needs can the caregiver meet them? Does the care recipient have certain preferences, and can the caregiver abide by them?
As with dating, sometimes there is a mismatch, be sure to have an exit strategy with a corresponding back up plan. Sometimes “blind dates” work, and other times they do not. Be realistic in your expectations, address what is important to you and the care recipient and also take the time to learn about the caregiver, establish guidelines and expectations up front and together to ensure minimal disruptions to the care recipient.
Financial implications associated with hiring a caregiver will be discussed in a future post.
#palliativecare, #palliative, #hpm, #homehealth, #compassion, #eol, #caregiving
The fitness for caregiving duty question should not be taken lightly. Is the caregiver Willing, Able & Available needs to be asked and responses evaluated continuously during the caregiving journey ensuring the caregiver ability to meet the demands of the role, and that the loved one’s care needs are being safely met. Typically, when a loved one has physical or mental status change there will be a corresponding change in caregiving needs. As the loved one’s condition declines, the care needs typically increase. The additional care requirements mean more frequent and complex caregiving interactions that can be emotionally and physically draining. Caregiving assistance that may have been periodic or supportive in nature shifts to being more intensive. Intensive caregiving requirements go beyond some assistance with bathing and grooming, toileting, feeding, dressing, transferring and walking to having to meet all of those needs with extra assistance. This corresponds to spending more time and energy on the various caregiving functions while continuing to manage medications and keeping the loved one comfortable.
The questions that caregivers and their support system need to continuously evaluate are:
- Is the caregiver able to meet the care needs of the loved one? That is, can they physically and mentally complete the caregiving tasks safely? If the recipient of care is physically taller and heavier than the caregiver there will be physical constraints, including limitations in the ability to lift, turn, safely walk and provide the assistance with activities of daily living. Is the caregiver able to cope with the demands of caregiving?
- Is the caregiver willing to meet the care needs of the loved one? That is, does the caregiver feel comfortable and willing to assume these additional tasks that may include emptying bedpans, dealing with vomit, handling additional bodily fluids, managing medical equipment and supplies?
- Is the caregiver available to meet the care needs of the loved one? That is, can the caregiver be present to carry out the necessary care? Does the caregiver have conflicting responsibilities such as work, child care or other obligations that will impact their ability to meet the needs of the loved one?
If the answers to these questions is “no” that is a clear indication that additional caregiving support is needed. This is the time that the members of the circle-of-care, needs to reevaluate the caregiving plan and make modifications to meet the recipient’s needs.
Don’t forget that caregivers need to opportunity to “recharge” and take care of their own physical and emotional needs before meeting the needs of others. Friends of caregivers need to help the caregiver get the required time away for a bit of relaxation, a tasty meal, run an errand or read a book. Remind the caregiver of the instructions given on a plane, that when the oxygen masks come down, always put on your own mask before assisting others. Evaluate your caregiver situation for being able, willing and available to perform the needed care tasks.
#palliativecare, #palliative, #hpm, #homehealth, #compassion
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