Confusion–Whose Reality?

The average individual entering memory care has a standard Living Will that does not delineate any range of choice as their cognitive and physical health changes. The standard Living Will covers extreme situations but not any interim changes that often happen as the individual’s dementia advances. This leaves a vast territory of decision that only the adult children, in particular the Healthcare Surrogate, must navigate.

It is in this vast territory that all the foibles and dysfunctions of the family or the healthcare surrogate raise their ugly heads. Time and time again family members choose dramatic surgery to “help Daddy get better” with no regard to the impact of the anesthesia, the rehab in Daddy’s future, or Daddy’s potential for “getting better.”
Whose reality is this? Whose matters most?

Does the 94 year old who has declined physically and mentally; whose engagement in the world is minimal; whose few words are of joining his deceased wife want to “get better” through surgery and rehabilitation? How can it be that he is on hospice for failure to thrive yet getting hip surgery for a fall? Is that a fair decision from his perspective?

We educate and reinforce the importance of entering the world of the individual. Walk in their shoes. See it from their perspective. Join them in their world. And yet, only a whisper is heard. When crisis strikes we become illiterate, we return to our reality regardless of what mom or dad want.

As I look at my Advance Directives, I fear that I have not covered enough eventualities. Will the dysfunctions of the family keep my surrogate from working from my reality instead of hers, or theirs? God willing I will have the voice and cognition to speak for myself. But if I don’t, I need to continue to add to my Advance Directives as I face the sobering reality that those who cannot speak are often forced into “getting better”.

Author: Cate
Passionate about dementia care and quality of life throughout the last days of life----sums up Cate McCarty, Dr. Cate, Dementia Coach. With close to forty years of long-term care experience in nursing and recreation, a Master's in Thanatology and a PhD in Aging Studies, Dr. Cate seizes every opportunity to translate research into quality of life for individuals with dementia and all of us who have the honor to "rub elbows" with them.

Leave a Reply

Your email address will not be published. Required fields are marked *