I'm back. Some of you have followed my posts/saga related to caregiving issues with my mom. Here is a link to what I believe is the most recent thread.

She is still at the wonderful ALF that she returned to after the trainwreck attempt to live with/near my oldest brother. Hospice was called in about a month ago. Her weight as of March 4th was 77 pounds.

I just found out yesterday that they don't believe she has eaten for a week. She is still drinking water.

They discovered that she has not been taking her medications (mainly Tylenol and Klonopin for leg cramps), and has instead been accumulating them in a nightstand drawer and under her bed (just tossed under there). They have let her know if she doesn't want to take any or all of the meds, she has every right not to and that there's no reason to go to such lengths.

She has been falling so much that the ALF has increased her level of care to "Gold". Her care level was "Bronze" prior to this change. Which means that she needs to call them whenever she wants/needs to move from one place to another, bathe, use the toilet, etc.

They have made clear to her (because of her ongoing reluctance to accept or ask for assistance) that if she doesn't comply with that, she will not be able to stay there. This increase in care level will also cost her an additional $750/month, though she can move to an available garden (studio/efficiency) apartment for a savings of $750/month, so it would balance out. We had encouraged her to downsize several times over the past year anyway, as the large one bedroom is much more space than she uses or needs. She had told me five or six months ago that she was going to make the change, but that she had to "wait for someone to die" so that a unit would be available. when I asked the ALF about this, they said she told them that I would not allow her to move to the smaller apartment that was available because it was on the 2nd floor and I was afraid there would be a fire.


Anyway, I've been on the phone a lot with the wonderful woman from hospice for the past couple of days. No one is actually saying it, but I suspect my mom is not going to last much longer.

One of the things hospice gently told me yesterday is that I need to provide contact information to them about who should be called should mom pass away. In other words, the funeral home or cremation service place. Mom has always said she wanted to be cremated. I will be making a lot of calls today and asking a lot of questions so that I can make a decision.

Not eating, extremely weak, sleeping a lot... Hospice used the term "passive suicide". When I asked hospice what I should expect, they said there is no way to tell. But I just have a feeling my mom won't last much longer. How do you know when the end is near?

I hope that you find time to rest, I know it is all consuming but you matter and need to get some sleep.

I am just seeing your post, i don't know why some posts do that, hopefully more will see it and offer their support.

I have read many of your posts and I have to say, your mom is very blessed to have you as a daughter.

Hugs and strength to you! God bless you.
Helpful Answer (0)
Reply to Isthisrealyreal

I'm so glad to see some responses. I'm so very, very tired in every possible way.

Since I posted this query, the ALF and hospice spoke to me and said that my mom continues to refuse to use her call button, and is falling repeatedly every day. If she won't use the call button, we had two options: Extended care facility or 24/7 companion care in place at the ALF.

I initiated 24/7 companion care a couple of days ago. Basically, someone is there around the clock to assist her with all sorts of things, and to keep her from trying to do things by herself. I felt all the blood rush out of my head when I was told I had to give them a deposit of $8,466. That will cover the first two weeks. Which is conveniently the length of time we were told my mom likely has left.

That said, I am humbly grateful that she has the resources to allow me to do this for her. At this cost, however, those resources will be drained in short order.

The irony I expect: Mom will make a full (for her condition) recovery, no longer need the companion care, and then will be angry with me for spending so much of her money, forcing her to move to a Medicaid-accepting facility sooner than the three years she had remaining there.

While all this is going on, I'm in daily contact with her financial guy, figuring out how much money I need to withdraw from her investments to manage this situation. I paid the $8K+ out of my pocket because we needed to start the companion care immediately and not wait the 4 or 5 days it would have taken to get her funds, so I'm asking for reimbursement of that. I am gathering the info to get her taxes done. She will owe about $4K, so I'll need to withdraw that, as well. Plus I've been advised by her financial guy to pre-pay her final arrangements. Plus money to have her final tax return done and final taxes paid, as needed. And more, of course.

Like I said: tired.

On the plus side, she has adapted to having someone there all the time. Which normally she would HATE. So that's good. She even had the companion call me tonight so she could talk to me. I did get the strong sense that the companion shared with her what I said on the phone today, that I would love to talk to her but worry about disturbing or waking her. At any rate, that was a nice surprise.

She also told me that she ate 4 sweet and sour meatballs and a bite of asparagus last night (I knew they were Swedish meatballs), and that she ate half a baked potato tonight. That's more than she has eaten the last three weeks combined.

So maybe this companion care will turn things around... Hospice is doubtful. The ALF is doubtful. In fact, the hateful part-time nurse at the ALF told me yesterday, "Your mama is dyin' right now. Right this minute. So I hope ain't no other people firin' you up with false hope or nuthin'."

And that, my friends, is a quote.
Helpful Answer (3)
Reply to tinkster
shad250 Mar 16, 2019
Part time nurse is probably overworked and tired.
I'm really shocked that Hospice used the term passive suicide. It's my understanding that people who are nearing the end of life, don't want or accept food. That sounds very bizarre and inappropriate to me. I'm not sure why they thought that would be of comfort to the family members.

This must be such a difficult time for you. I don't have any information on this question, but, I think you'll get some responses from those who do.
Helpful Answer (2)
Reply to Sunnygirl1
shad250 Mar 16, 2019
Hospice wants to be sure they'll get paid, period.
There are certain signs to watch for but that is really a question to put to the hospice nurses, they usually aren't afraid to spell it all out with as much detail as you want.
Helpful Answer (3)
Reply to cwillie

Aw Tinkster! I'm so sorry that you're going through this!

People can last a long time if they are still drinking water. If I recall correctly, it took 2 months for my late MIL to die after she declared that she was going to starve herself to death. But she continued to drink.

I can only tell you to take care of yourself during this fraught time. From your previous posts, it sounds as though your mom has dealt with mental illness her entire life and her end of life manipulation is no different than her dysfunction when she was more able.

Be good to yourself. (((((Hugs)))))
Helpful Answer (4)
Reply to BarbBrooklyn

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