Are we doing the right thing?
Me again. Back from vacation to find Mom deteriorating quickly but still her usual stubborn uncooperative self. She is anorexic. She probably hasn't eaten more than one or two bites of any meal in the past 20 years, but now its worse. Although we pay over $4000 a month for her care, she doesn't eat their food either. Mostly she exists on a few sips of ensure, yogurt or sweets we bring. She is down to 92 pounds, frail, has dementia, is deaf, despite the hearing aids, 3 minute memory so you can't talk to her. She is filthy, won't bathe, won't use the walker, won't use the elevator, wears the same clothes, puts all her food in her purse,(which stinks) her room is filthy (although AL tries to keep it clean), she is incontinent half the time but sort of takes care of it. AL does what they can, but she is still independent and lucid enough they legally can't force her, and convincing her is like talking reason to a donkey. She is miserable, unhappy, just sits, enjoys nothing. Are we doing the right thing - continuing to bring her ensure, snacks to exist on when clearly it is just enough to keep her alive, existing, not living? Or, should we stop bringing her those things and let nature take its course? Or would it force her to begin eating the food that is good for her, maybe make her stronger and healthier? We just don't know. At 100, in her mental and physical state, she has no quality of life, and is in a state of perpetual unhappiness.
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When my Mom's brain does looped around to reality she will complain of the pureed food, she doesn't like it, won't eat it. Mom refuses to do any exercises to get stronger, she doesn't like being in the gym with other people, and that the staff leaves her sitting alone in her wheelchair. She's not social because of her lack of hearing and seeing.
Amy, your Mom and mine would make good roommates.
I can think of two benefits to bringing Mom some food. 1) It gives you something to do for her. 2) It may convey to her that she is still loved.
#1 is somewhat offset by your uncertainty if it is "right" to do it. If you do continue with the treats, please just give that struggle up. Bringing food is something you can do, so you do it. (If that is your decision.)
#2 may or may not be true -- who know how the demented mind works? If she seems glad to get the treats I'd take it as a good sign.
As to what the impact of giving her food is, does it really matter? She is apparently surviving on VERY LITTLE food, right? And this has been going on for years. Ultimately, what difference does it make if she gets her sustaining calories from food you bring or from "healthy" food the AL supplies? No amount of "healthy" eating at this point is going to cure her deafness or make her want a shower or clear up her mind.
Do you think that if you could somehow manipulate it so she got her limited calories from AL food that she would live to be, say 101 and 12 days, but if she subsists on your offerings she will die at 101 and 3 days? I doubt that it will make any difference, and even if it did, so what?
Your anguish, I think, is that your mother's quality of life is poor to non-existent. That would be my anguish, I know. But eating mashed potatoes instead of drinking ensure is not going to correct that horrifying fact.
What will be, will be. Take some comfort in knowing that whatever you decide to do or not do, it outcome is really not in your hands.
AMYGRACE, Your mom needs more than AL.
I agree, $4k / mo.?, professionals can't force her. What about persuade and encourage her? Not taking NO for an answer because she doesn't know what she is saying. Does she eat for you?
The thing is, I have taken on the role of caregiver, and I know that most days my mother is not ready to die. To stop providing the necessities of life is essentially a passive form of mercy killing, and unless you are very sure that you are following your mothers wishes I wouldn't want you to go there.
Are you sure she's competent? One can be lucid and still incompetent.
The reason i suggest NH is that for Hospice, youd need someone with her round the clock in AL. Also, i don't believe that they would be able NOT to transport her in case of emergency. In my mom's NH, they have to call us before transport. We can refuse.
Amy, this is ao sad, and must be so very hard for you. (((((((Hugs))))))))
One thing, do you have a DNR (Do Not Resuscitate) on her? If not, you might want to look into it. Does anyone have medical POA on her? If so, then there's no need to take her to the hospital and hook her up with an IV (in your example). Let her stay where she is and go out of this world from there...that's a decision her POA can make (if someone has that). Hugs - this has to be awful for both of you.
I'm not sure I understand expecting a person with advanced dementia to clean, bathe, change clothes, etc? Don't the staff at her facility comment on her level of care being greater than what they can provide?
I think that wishing for her to grow stronger and healthier at 100 years of age and with advanced dementia to be quite optimistic.
Have you spoken with her doctor about Palliative care or Hospice?
At some point it's obvious that a person is no longer able to take care of their needs. I would consult with a professional and her doctor to see what she needs next.
Simplistic, but in your shoes I think (only think, how would I know?) that I'd keep visiting but stop taking her goodies and tell her it's doctor's orders - she's got to start helping herself by eating the well-balanced diet provided by the ALF. Assuming that the ALF *is* providing a good diet? :/
Kind of kill or cure - you'd be calling her bluff. But on the plus side, if it starts the ball rolling with her accepting more input from the facility..? Can't hurt to give it a go, maybe?
So hard to see someone you care about in self-destruct mode. But keep reminding yourself that some people are 'happy being miserable', and if independence matters more to her than anything in the world then do what you can to keep up at least a pretence of it. So hard. I'm sorry.