End of Life Discussions

My father is 90 years old and has progressively worsening dementia. He lives with his wife who is still working as a realtor at age 78, sharp as a tack and doing a great job of taking care of him (with some hired assistance) in their home and keeping him out of assisted living.

But their family doctor has told me and my 3 siblings, 2 of whom are still working full time, that we need to give my father’s wife and caretaker a regular (ie monthly) respite to “get away and recharge her batteries or she will break down and they will both be in a nursing home”. My sisters and I, none of whom live in the same state as my father, are now attempting to do this.

I just visited for my “time” and this visit, being the doctor, I was tasked with finding out where, when and how bad his back pain was so we could provide him with some relief and simply- I can’t!
He is unable to answer simple questions about how he feels now. He answers all questions of “Did this help” with yes, whether it is true or not. He can in no way give a history-questions are met with silent periods of a minute or more. It makes it hard to make an assessment of the problem in order to make recommendations on how to help.

So we are left with what they do in veterinary medicine and pediatrics. Observe for objective signs.

He tries to tell a story and I can’t make any sense out of it, even if I know what the story is and how it turns out.

This is driving me crazy!
I now better understand what the difficulties caregivers for those with dementia have.

Three observations
First- it tears me up watching what he is going through and how frustrated he is!

Second-it is incredibly frustrating for everybody who deals with the daily challenges.
I write this essay as a reminder to us as physicians who have these people as patients to remember these caregivers when we have patients who have severe dementia and how hard it is for them to deal with this day to day.

Three-what passed through my head was “Please don’t let me get like this. This is no way to live.”
Intellectually I know we don’t have that right to take active steps to end a life. But if I get like this, I don’t want my family to keep me going if I am like this.” To me this is an end stage of life “Disease” like cancer or ALS.

Another excellent reason for patients to have ”The conversation” https://hospicefoundation.org/Hospice-Care/Starting-the-Conversation about end-of-life issues with their family members and their personal physician-while they still can.

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