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She had a stroke on Monday. She was in the hospital for a fall on Sunday. They were going to do an ortho eval, and then Monday she stroked. She was a hot mess. No recognition of anyone, uncoordinated movements, combative. Yesterday was the first day she recognized us, but she can't talk at all. It's not clear (to me) if she doesn't realize her sounds are not words, or if she can't understand why we don't understand. PT has her up and moving, so that's a bit better.

But the big worry is she can't swallow. They're going to do a barium/x-ray test to evaluate. At first you might not think it a big deal, but that is actually a much larger problem than ambulation. If she can't swallow, she dies. They'll test again in a few days if she fails today's test. She already failed a non-barium test (just giving her little bits of water) on Tuesday.

I have been prepared for something like this. She's been declining for a while. But it's still a bit of a shock, especially when you see her in the hospital bed unable to speak or communicate. I'm not sure if our presence helps. She desperately wants to communicate with me, but right now it's hopeless. Before we visited, the nurses said she was pretty quiet.

I have been prepared for something like this. She's been declining for a while. But it's still a bit of a shock, especially when you see her in the hospital bed unable to speak or communicate. I'm not sure if our presence helps. She desperately wants to communicate with me, but right now it's hopeless. - 1pg

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I am so sorry to hear. Even if she can't communicate, it appears she knows you are there. Your presence, the sound of your voice and a gentle touch I am sure gives her comfort even if she can't express it.

At least that was the way it was in my Mothers final few weeks.

Wow. And wow!!!

It's not clear (to me) if she doesn't realize her sounds are not words, or if she can't understand why we don't understand.

With her dementia as advanced as it is......no way of knowing what she's aware of or not, and what her confusions are. I would say clearly to her, while you caress her hand, that an accident in her brain has made it impossible for her to talk clearly, and that you can't understand what she's trying to say. But that it doesn't make you love her any less. And that you're glad she can understand you when you tell her you love her. And that you also say "love" when you caress her hand. And that hopefully she will regain her ability to talk so that you can understand her.

But the big worry is she can't swallow. ... At first you might not think it a big deal, but that is actually a much larger problem than ambulation. If she can't swallow, she dies.

It is a significant problem, but not at all as critical as the hospital personnel have allowed you to think. If she cannot swallow, there are 2 alternatives. One is to insert a feeding tube, which will remain in place for as long as she's unable to swallow......temporarily or permanently. The other alternative.....but only if the loss of swallow ability is permanent.....would be the determination that her time has come, that the quality of her life is too severely diminished at this point. Then she would be placed in hospice and given medication to make her comfortable. And she would gradually fade away.

My father....who had Alzheimers....passed in this way. And my brother and I remained with him the entire time. The husband of a friend of mine.....who had metastatic esophageal cancer that no longer responded to treatment....did have a feeding tube for a little while, when it made sense. But once he stopped responding to those around him, the tube was removed.

Good luck in coping with this!!! And make sure to ask questions. Get as much information as you can. Also ask to meet with a social worker to talk about alternatives.

Hugs!!!

They are advising against a feeding tube because patients with dementia tend to pull them out, causing other problems. On Tuesday they had to tie her down because she was trying to pull out her IV and get up. I was there, so I know they weren't exaggerating. She was also trying to hit the nurses. She wasn't doing that Wed or Thurs (and wasn't restrained).

Her living will specifies "comfort care", which is somewhat vague. But apparently the medical folks interpret it as no artificial support. Oral food (if possible), IV fluids and meds. Which is consistent with what I know her wishes to have been. But she was understanding yesterday (I could tell by facial expressions and rolling of her eyes), which isn't how one imagines that situation. You think of someone comatose or brain-dead hooked up to a machine. She's not that.

They rescheduled the swallow test for today.

They have said that a social worker will talk with us at some point. Either for rehab, or hospice. Don't know which yet.

Turns out it was an ischemic stroke. Instead of bleeding into the brain (which is how I visualize a stroke), blood was prevented from flowing to parts of the brain. Which is why they ordered an echo and wanted to know more about her heart (echo was normal). So those areas of the brain are most likely dead.

Update.

She failed the swallow test. So a cadre of medical people are saying to put her into hospice. No feeding tubes (dementia patients often pull them out, which is bad). The hospice will work with her MC facility, and provide what she needs (wheelchair, bed alarm, etc). The diagnosis is stroke, so anything related to a stroke the MC staff calls the hospice. If it's unrelated, they can call 911.

It's nice she'll be able to go back to familiar surroundings. A hospice facility would just upset her more because she would not know it. She knows her room.

It certainly appears that you're getting the best advice. Accepting it brings such ambivalence. You know it's the right thing, the kindest thing to do for your mom. But for you, you know that the inevitable loss is now close at hand.

Hospice care refers to the nature of the care, not to the specific place where it occurs. My dad's hospice care was at his nursing home. He remained in his room, but his medications were stopped. He was refusing to take food. But he did finally accept water. And he was given a very low dose of morphine to make him comfortable. And hospice care is often at home. A friend of mine is a hospice nurse. She visits patients at home and determines their needs. And I have 2 friends whose husbands were in hospice care at home.

My heart goes out to you.

She's being moved home today. They are ordering a hospital bed and bed alarm for her. Her bed will be set aside (anyone want a queen-sized Sleep Number bed with linens? I'd hate to just toss it). I'll stop by later. I would just be in the way, and add to confusion. I'm told so far today she has refused anything by mouth. If that continues, she won't be on hospice care for very long. Other than swallow testing (a few teaspoons of apple sauce), she hasn't had food since Sunday. Hydration has been IV. She doesn't like ice chips because they're cold.

She's being moved home today. ... she hasn't had food since Sunday.


I hope the move went without incident, and that being back in her familiar environment has been calming. How was your time with her?

So it's been a week now since she has eaten? Have they given you any sense as to how long it will take for her to fade away? I'd suggest spending as much time with her as you can (if you haven't already decided this). I was so glad afterward that I'd decided to do this with my dad. In addition to the overall aspect of connection and support, he had several highly agitated-seeming moments shortly before the end, and my brother and I were able to put our arms around him and calm him. And afterward, I felt that we had taken part in a basic, ageless, life circle. My dad had helped me come into the world at the very beginning of my life, and I had helped him take leave of the world at the end of his life. It was (and still is) a very powerful emotion and sense of rightness. And helped in some way to take an edge off the profound sense of his loss.

How is your mom at this point? Is she still with us?
How are YOU doing???

(((opg)))

Yeah, she's still there. Bed-ridden, and unable to speak (except a few words like "yes" and "no", but little else intelligible). She actually has eaten a bit over the past few days, which surprised everyone. Not a lot, and slowly, but some pureed food. They also give her thickened water, and she's taking that too. So far no significant aspiration. She isn't expected to recover, but there is the possibility. So they offer her food and water, and give her morphine if she starts wailing (which she does if they move her). If she does recover, she will probably be in a wheelchair. But one thing at a time.

Given the rapidity of her moves from IL, to AL, to MC, I've sort of been prepared. Her rapid decline made it obvious that she was slipping away. In some ways, she already left even if her body is still breathing. There were good days where she would remember me, and bad days where she wouldn't (and sometimes, even if she remembered me, her sentences would make no sense at all). After the stroke, there are times she appears to know me, and other times there is no recognition in her eyes.

Such a gradual loss of who she was as your mother, as a person, is so difficult. Each time another part of her disappears, you grieve for the loss yet again.

I'm so sorry you're going through this.

Mom had some kind of episode in March and could no longer swallow. She went to the hospital then went back to Memory Care, but was only there in body. It took her a long time to die - 11 days, but she never regained consciousness.

Borgney

She died this morning. Last week she seemed to be improving, taking water and food (with difficulty, but she was doing it). Then maybe Saturday she started taking nothing. They put her on regular morphine Monday night. Deterioration had been rapid since the weekend.

It took her a long time to die - 11 days, but she never regained consciousness.

Such a long and surreal time. The loss has such multiple dimensions.

She died this morning.

I think it's kinder for her that her suffering and confusions are finally over. But I'm so sorry for you. You've lost your mother with such finality.

Remembering back to when we first encountered each other on the Taking Care of Parents board at TMF.....quite a few years ago at this point. It's been a long journey.

Yeah, it's been a long ride. Downhill. But I did get useful information from folks who had already been there. Still, the stroke was unexpected. But perhaps a mercy as well. It hastened her departure by a year or more. She was getting more unhappy, in part because she was convinced everyone was stealing her stuff. She wanted out of there, but it was a nice facility, higher end, without going into one of those places that have $500K buy-ins, plus $10K/mo rent. The staff was really nice, and they all seemed to like her. The driver visited her almost every day after the stroke, and some of the staff was a bit emotional there towards the end. They actually cared.

I'm so sorry.

B

She died this morning. Last week she seemed to be improving, taking water and food (with difficulty, but she was doing it). Then maybe Saturday she started taking nothing. They put her on regular morphine Monday night. Deterioration had been rapid since the weekend.

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So sorry to hear. Even when you can see it coming, it still hurts.... a lot..... been there

I am so sorry to hear about the loss of your mom.

Troy

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