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.

The “Comments”

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
• Listen
• Smile & give a hug
• Offer specific assistance – Bring a meal, do a chore, run an errand to lighten the load of the caregiver

Avoid

• 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.