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.
7 comments
Hi Jenny, You are in a difficult situation. Working for a company you must follow their rules and protocols. When the protocols are in contrast to what you think is appropriate you have limited choices. One you can talk with your supervisor, explain your reasoning and come to an agreement on how a situation can be addresses. If you continue to have conflicts on care issues you might look for a place to work that is more compatible to your principles. Now, to the situation you mentioned. Dementia presents a unique challenge in the area of how much does the patient have a say in their care. I don’t think there can be a specific rule that applies to all. Dementia is such an individual disease in how it unfolds it can’t have a “one side fits all” plan of care. I would hope that facilities that provide care for dementia patients recognize this and allow their employees the latitude to use their judgement in providing care. This freedom to use judgement begins with comprehensive staff education. A whole another blog topic.
Blessings! Barbara
I have a dementia patient where I work, today he asked me to stay in bed, so I left him in bed as he asked and I was told by a nurse where I work that I was wrong to do this and he hasn’t go capacity to answer simple questions when I know he can, I was told that I was depriving him of his liberty when this was his choice, so what do I do?
Hi Heather, in response to your questions about letting your mom be comfortable rather than forcing her to sit in chair and eat when she doesn’t want to: I agree with your idea for her care. You are allowing her final days to be comfortable instead of pushing an agenda that makes others comfortable but not her. When a loved one is declining our instinct tells us to do everything medically possible to keep a person breathing—no matter how the methods affect the ill person. Since death comes to us all, I believe if a person is fixable and can have a quality life we need to do our best to fix them BUT when the quality of living is severely compromised through age, dementia, chronic, progressive, non fixable illness are we the watchers, the caregivers, meeting our needs or the person afflicted.? It seems to me that is what is happening here. Heather, it sounds like you are on the right tract in caring for your mom—keep loving her and care for her in the manner you would want to be treated if places were switched.
My blessings are with you , your mom and your family. Barbara
Mom is 88 in late stage dementia, cannot sit up without propping, with a pronounced lean. is there any point in getting her out of bed other than to go on the toilet? using your suggestion it seems like I should let her remain in bed because that’s how I would want to be you know the most comfortable, of course moved periodically, but I’m encountering conflict with family members who disagree and feel that she should be woken up in the morning, follow a regular schedule and I feel like I just need to eat her be comfortable while feeding her at every opportunity that she will accept it instead of doing meals we just have snacks and bites pretty constantly. I purchased one of those self inflating and deflating bed pads to keep her from getting bed sores. I don’t want her neglected and left in the bed but if that’s what’s most comfortable shouldn’t that be the priority?
Hi Estelle, I’m not sure what you are asking about the person you are caring for. Being 90 years old, with dementia, I am not surprised she is having "trouble getting out of bed” "and not eating”. Her body is slowly shutting down. Carefully help her get out of bed, always offer her food but you don’t need to force her to eat. Treat her gently with compassion.
I appreciate your concern for her. That tells me you are a caring, considerate professional. Blessings to you in the work you are doing. Barbara
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