In any caregiving situation, there are always difficult decisions to make. The most challenging may be, “Who is going to make the decisions?”

Some elder care experts recommend involving “as many family members as possible” in this process. I propose narrowing it down to those family members who are actually going to be involved in the caregiving process. Asking members of your loved one’s health care team to serve in an “advisory capacity” will be helpful.

Unfortunately, caregiving decisions often confront us unexpectedly, following an acute episode such as a stroke or heart attack. Emotions are hypersensitive; stress is pervasive; sleep deprivation (remember, this is considered a form of torture) numbs the mind and depletes the body. 

And you are supposed to make rational decisions? Calm down. Breathe deeply. 

The two people whose lives will be most affected are the care recipient and the primary caregiver(s). It is essential to include the recipient if he or she is cognitively capable of making decisions. Just as important is the perspective of the caregiver. Decisions should take into consideration what would be the best decision for both. It should come as no surprise that these perspectives may not jive. Compromise may be the key word. 

An online article at www.caregiverslibrary.org describes the most successful resolution as one that: has the fewest undesirable consequences; appeals most strongly to the caregiver and recipient; and has the most support from other involved family members. Another significant statement in this article is, “The family member whose decision should carry the most weight is the one who stands to be most affected by the decision.”

Let me give you an example. An elderly woman (mid-seventies) will be caregiver for her husband who has returned from the hospital with a new diagnosis of congestive heart failure in addition to multiple other health problems, including mild cognitive impairment. A middle-aged adult daughter who lives in the home – but works full-time – will assist with her father’s care. After only a few days, the wife is exhausted, mostly from tending to her husband during his multiple trips to the bathroom during the night – every night. Each time he awakens, he expects her to assist him to a sitting position on the side of the bed. She remorsefully confides, “I am just not physically able to pull him up.”

Her solution to this problem is to obtain a hospital bed (which has already been suggested by the home-health nurse). There is a lovely guest room next door to the master bedroom. Not only does it have a lovely view of the back yard garden, but there is plenty of room for a bed and a bedside commode. But the husband balks at the idea – and the daughter sides with her father. 

“If Daddy doesn’t want to sleep in a hospital bed, he should not be forced to do so.” Ahem. So, if you were a part of the family council, how would you vote?

If the wife’s back goes out, that’s it for her caregiving days; in fact, she may then require a caregiver. If the husband would give it a try, he just may discover that a hospital bed increases his comfort and allows him greater independence and mobility. It seems his objection is due more to the idea of needing a hospital bed, rather than the actual bed. (Which by the way, he found quite satisfactory during his hospital stay.)

Someone needs to explain these possibilities to the husband and daughter – but who? I suggest this would be a good role for the home health nurse, who could explain the benefits of a hospital bed – for recipient and giver – from a therapeutic perspective. I vote with the caregiver, who stands to be the most affected by this decision. 

Caring Quote: The well-being of both caregiver and care recipient depends on finding a balance between the recipient’s needs and desires and the caregiver’s ability to fulfill them. Carol Whitlatch, PhD, American Journal of Nursing, September 2008