QUESTION: What do you think about families that insist their Alzheimer's patient get out of bed and be with others when all the patient wants to do is sleep, stay prone, and not eat or drink.
It is so hard to watch someone you care about give up on living, doing all the things that go against our idea of what living is about---eating, being active, and interacting. Yet Alzheimer's, actually most dementia patients, do just that. Their living goes against all we believe in. It is horrific to watch someone we love, and remember as vibrant, cease to function mentally and physically.
Living with someone who has dementia is a daily challenge. It requires the constant reminder that this person is not who they once were. It presents the challenge of learning how to live with the person they have become. Our instincts tell us our loved one needs to eat, get up and move about to live. We tend to focus on--normal activities.
My key question about eating, sleeping, and forcing activities, is what are we trying to accomplish and why? What is the outcome we are hoping for? Notice if by forcing the person to eat and get out of bed are they complying gently or are they unhappy and discontent. If they are displaying unhappiness and discontent why would we want to make their days miserable?
I think we can shift our focus. Shift it to see the person as they are today and what do we need to do to help them have a “good” today. How can we bring some joy into their life for this one day? Explore what would please this person today. Maybe it is to stay in bed with you or anyone just sitting by them and being a presence. That may be all they need.
Will complying with their wishes, not forcing them to eat, not forcing them to get out of bed affect the length of their life? Probably. But if life was different and you were the one with dementia wanting to stay in bed and not eat what course of action would you choose for yourself? Would you rather have your final days be filled with pressure, force, and conflict or peacefully go to sleep a bit sooner.
It is hard to comprehend what is going on in the minds of a person with Alzheimer's or dementia. We can only project from ourselves what we would want if the tables were turned.
Something more about Caregivers and Alzheimer's...
Caring for someone with Alzheimer's or dementia is a particular kind of challenge. Caregivers need a great deal of support in general, but as Alzheimer's and dementia progresses, it becomes more difficult to "reach" the person. There can be a loneliness and grief in the care giving. Support is needed. That is why I created By Your Side, A Guide for Caring for the Dying at Home is knowledge and support for providing care at home. It is written for the caregiver. The guidebook addresses end of life choices (life sustaining, comfort care), advance directives, and funeral planning. It details signs of approaching death (what to look for, what to do); describes end of life care at home; pain management; care of dementia patients at end of life; and, very importantly, how to take care of yourself as you fulfill your role as caregiver.