Are we doing the right thing?

AmyGrace, my Mom is in the same predicament at 97, after a bad fall a couple weeks ago which resulted in a brain injury. She stopped eating. Just a couple sips of Ensure or a half a cup of milk a day. She went from 95 lbs down to 83 lbs. I am not sure if she is giving up or if her mind is telling her that she is full.

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.

Jeanne, you are right, very wise thinking. Thank you. I had a chat with the nurses. I always go in and talk to them, get a report, etc. We discussed the food situation (because Mom is anorexic and puts her food in her purse and drawers - and it rots) I explained she is not hoarding, she is hiding it so she doesn't have to eat it. I told them to check her purse and throw stuff out - she will not care or miss it as she has no intention of eating it. I will continue to bring yogurt, ensure, snacks etc. I even brought a dozen small bottles of water and little bottles of juice. Any calories we can get in her, are good and keep her alive so she won't faint and fall.

Reading through the comments, that is another good point: what do the staff at the ALF have to say about her? Are they giving you any feedback?

AmyGrace, this must be sooo hard for you! My heart goes out to you.

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.

Nannycam, she must be eating more than you know about. A NH would do intake/output. SNF.
AMYGRACE, Your mom needs more than AL.

Cwillie, love your answer! So sorry that your mom's end of life has come to this. It is good you are there for her. {{{{HUGS}}}}.

Make her as comfortable as possible. Be there at feeding time, she may be on a different schedule than the facilities meals.
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?

$4,000 a month, she's filthy and not eating real meals?

I have those sort of conversations with myself... should I keep doing the things that keep my mom alive, or should I withdraw my care and let her deteriorate and thus speed her death. She is never hungry, seldom asks for food, in fact often just the opposite, so if I stop spoon feeding her she will definitely die sooner.
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.

I think in your shoes I'd call in hospice and have her evaluated. The, I'd have her transported to a nh or hospice facility for end of life care.

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))))))))

AmyGrace I think whatever you decide will be a good decision. Your mom is obviously a fighter to have lasted to 100. I'd probably continue to bring her the snacks you bring her, just to make it easier on her. But if you choose to stop doing that. then that's a good decision too. I don't think there's a right or wrong decision in this case - both are difficult.

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.

From your description, it doesn't sound like she is capable of understanding an ultimatum. With advance dementia, I don't see the point in trying to bargain or negotiate. To me its like trying to have a damaged brain perform tasks that they aren't capable of performing.

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.

Its a tough decision, because yes, she might eat a little more, or it might mean she will die of starvation its a painless way many very old people or ill people unconsciously choose to go. Our family is aging and we have lost several in the past few years, and at the end, they all stopped eating, so I wonder have we been interfering with the normal progression of age more than we are helping her? Or she could end up with worse dementia and collapse and be taken to a nursing home or mental care facility that brings her back enough to lie in a hospital bed for years with an IV in her arm, keeping her alive as a vegetable.

Oof. AmyGrace, what a nightmare you're going through.

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.

And, she is already on an antidepressant and an appetite enhancer. She is (and has been) just an unhappy, self destructive, frail sad person existing and starving. (and what she thinks - independent)