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?

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Thank you all so much. You guys know more about what has transpired over the past four years for me than anyone IRL. That's not to say that there's no one here for me IRL, but I can't unload everything onto all of them.

Through this process with mom, I guess I have been subconsciously building my little personal support army. My remaining brother is going to stay in mom's house which is next door to me. My BFF moved closer to me (1.5 blocks away now), and she *can* be very supportive in unique ways. Unfortunately, listening isn't one of them. :-)

My poor husband is here for me 24/7, but I truly believe he has felt more pain that I have over these past four years. It has hurt him to see me so battered by the whole situation, and it has left marks on his soul.

So those are my IRL people. I have a lot of wonderful friends on Facebook, as I was fairly well-known in the arts for many, many years. I also taught classes around the world for several years, and made many IRL but not local friends that way. I also created a super private room on Facebook for a dozen of the best of these friends. A safe space where we can say or talk about whatever we need to without fear. That has really helped me, as well as the others in our "Dirty Dozen".

I also feel oddly alone. I'm an 'orphan' now. It's just my other brother and me. It just kind of feels like the world got a lot bigger almost overnight, and I got a lot 'smaller', if that makes sense.

I was wondering yesterday if I need to talk to someone, and I don't really feel like I do. I'm not on any anti-depressants, I don't drink or do drugs (other than maybe two or three Amaretto Sours a year).

I kind of feel bad that I am not falling apart, if that makes any sense. I haven't cried. I haven't felt despair. Combining my emotional responses to both deaths, I have felt relief, sadness for what could have been, anger (because of things that didn't have to happen) and a certain amount of freedom (which feels wrong somehow).

The freedom aspect of what I'm feeling comes from thinking back on how my mom worried herself literally sick over so many things, crying through the night for my (now deceased) brother and fretting over money (even though I told her she would be fine and had plenty). Worrying didn't fix any of those things, nor did it make her situation better. It also never changed any outcome whatsoever. Had she NOT worried, she would still be where she is today.

I inherited that tendency to stress and worry from her, and while it certainly makes me the uber-organized tender-of-details and manager of the Universe who people come to when they need something managed, that kind of pressure on oneself and the accompanying stress/worry do NOTHING to improve your life. At the end of the day, with worry or without, you are just as dead as the next person.

When hospice asked my mom what she would tell her children if she could (oddly worded, but...), she said, "I would tell my daughter to learn to live each day as though it were her last."

As I have done my best to honor her and her wishes throughout my whole life, I plan to continue that by trying to "unclench" a little and allow myself to enjoy life more. To have more fun. To allow myself rest and downtime.

I think it's truly the best thing for me to work towards.
Helpful Answer (6)
Reply to tinkster

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

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.
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Reply to tinkster
shad250 Mar 16, 2019
Part time nurse is probably overworked and tired.
Well, here I am. After all the input and support I've received here over time, the least I could do is give you guys some closure. I mean, we read about people's lives, trials and tribulations, and there's a NEED to know how it all ends, right?

My mom passed away Sunday, May 19th at 2:00 AM.

She seemed a lot different those last couple of months. Like she finally had some peace, maybe from knowing the end was near.

24 days later -- yesterday -- my troubled brother took his own life. I suspect he couldn't imagine the world without mom in it.

So there you have it. I hope they both finally have the peace they desperately needed all their lives. I truly, truly wish that for them.
Helpful Answer (4)
Reply to tinkster
Segoline Jun 13, 2019
Hey there. I have been through both. My mom died last week. And I have a familiar relationship with suicide. PM me if you would like.

And @shad you are very ignorant of hospice. Very.

Towards the end of life, they stop eating and drinking. They can't swallow. So taking all of these pills is pointless and causes them distress.

I don't know shad, what your experiences were with hospice. Mine and my family's were wonderful. OP I am so sorry for your losses, that's got to be a double whammy. But I hold you and yours in my heart. Peace to you.
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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

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 (3)
Reply to Sunnygirl1
shad250 Mar 16, 2019
Hospice wants to be sure they'll get paid, period.
Oh Tinkster.

May your mother rest in peace. I am happy for you that she seemed to achieve some peace of mind at the end of her life, too.

But your brother! - oh, heavens.

Could you check in with us regularly, just for the time being, so we can keep a bit of an eye on you? Is anyone non-virtual with you?
Helpful Answer (3)
Reply to Countrymouse

I'm sorry for your loss Tinkster. May they rest in peace.
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Reply to cwillie

Just reading your story now, and I'd like to offer you my deepest condolences for both of your losses, Mother & Brother. I really took to heart your words about 'worrying' 92 y/o mother is totally anxiety ridden and it's rubbed off on me; I'm a worrier, trying NOT to be a worrier, and I appreciate your words as they are very, profoundly true.
Sending you a big hug.........don't feel bad about not crying *yet* either..........there is a great sense of relief when a loved one passes and the agony is finally over. Watching the death process is THE hardest thing a child can witness, no matter our age. And the more prolonged the process, the harder it is on all concerned. It's okay to feel relieved that your loved ones are at peace and out of pain, dear one.
Helpful Answer (3)
Reply to lealonnie1

Tinkster, may they have the peace that this world did not give them.

I hope you are taking care of you and finding your new reality balance.

Hugs, I am sorry for your losses.
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Reply to Isthisrealyreal

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