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Trying to understand this last stage a bit better.


A bit of background. FIL with severe dementia was put on hospice 4 weeks ago. He hasn't been able to stand or walk on his own, or care for his toileting needs for months, but could feed himself and was somewhat lucid and conversational but disassociated with realty often.


We were told about a week and a half ago that he was in 'transition' (hadn't eaten; to responsive, agitated, etc.). The hospice nurse told us we should call family 'sooner rather than later' if they wanted to see him. His two other children came out as well as our three adult children this past weekend; and boy did he 'rally'! He sat himself up in bed; crossed his legs (which he has never done!), had reasonable conversations with everyone and ate a bit of food at almost every meal. It was nice for everyone to see; but my husband and I knew it wouldn't last. Of course, it got my MIL and my SIL very excited as they thought he was 'getting better'.


The next day, he had clearly worn himself out and was back in bed; not sitting up; back to what my husband and I call 'normal'.


Now, a week later; he is eating a bit on his own; sleeping most of the time; but agitated; back to 'normal'.


We are told he is still in transition; and that these rallies are not uncommon.


How long can transition usually last? Are we down to days or weeks; or could it be months? We want to prepare the family and not give them false hope. Thank you all for any advice.

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As a former hospice social worker for many years, I can tell you that this can last weeks, maybe a month but probably not much more. Eating, peeing pooping are what we look for, when this stops, probably a week or so after that. It also depends on how strong his heart is , unfortunately the dying process can be very slow in elderly dementia patients.
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robandjane Aug 2022
Thank you for your insight - this is very helpful.
My FIL is still doing all of those things for now; but we can see a decline in his desire to feed himself (sometimes he will; other times the staff does it for him).
At 93; he has been in the hospital twice for A-Fib since October; once for a week and then rehab; the second time for 2 weeks and then rehab. As you know; the dementia just gets worse each time.
Before the heart problems; although he had been diagnosed with dementia about 4 years ago; he was 'healthy as a horse'; having never been in a hospital except for an appendectomy at 30 or so; and survived 18 months in a POW camp in North Korea; so he has an incredible constitution.
We are keeping a watchful eye on my MIL who lives down the hall in assisted living (also 93). As my FIL struggles; so does she - she tells us she won't be here much longer either. We are praying she can take the long goodbye well also.
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I doubt you're going to see months ahead but rather a week or two at most.

I used to think my mother put on her "company manners" when visitors outside the usual daily family visitors arrived. She perked up, and in fact, no one knew she had dementia until four years after she started exhibiting symptoms.

When it comes to dying, everyone has their own timetable. My mom was on hospice for seven months and survived on Ensure that whole time. Her transition began about three weeks before she died when we decided that getting her up and diessed each day was no longer viable. About three days before she died, her hospice nurse noticed something -- I'm not sure what -- and said I should call my brother to come. He and I were with her those last three days, and she died the morning of the fourth day before I arrived.

She was still drinking small amounts of it the day before she died, and her agitation took the form of twirling a lock of her hair -- something she'd done all her life.

The day before she died she raised her hand to twirl her hair, but it stopped about halfway to her head. It was as though she literally wound down before my eyes. I put her hand back down and twirled her hair for her, and she was gone the next morning.

You'll see the signs more and more as the time approaches, but that momentary rally doesn't mean too much. If they say he's transitioning, he is, and I'd suspect the end will come pretty soon.
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robandjane Aug 2022
Thank you for your insight. I know God is in control and only He determines the 'when' but as you know; the waiting can be difficult.
I smiled when I read 'company manners' - my FIL grew up in the south and that describes him to a T :)
I am stunned that your Mom could live on just Ensure for so long - but that is a good insight - my FIL is so thin now and hardly weights a thing and we keep thinking he surely won't be able to survive long after he stops eating anything solid and is only drinking Ensure. I'm glad you corrected us in that - I guess the body doesn't need much at all to sustain life at times.

Thank you again for your insight - everything we read is both encouraging and practical and it helps much to know others have been through this.
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Cyanosis
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Mother had a rally a couple of months before she died. She had been on only liquids and insisted she wanted a sandwich, which they gave her and she managed to eat and more after that. She was up in a wheel chair every day, but one morning they called me (I lived out of town) and said she had stopped eating. I knew that was the end. She went very quietly two days later. She was in last stage of vascular dementia.
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Hello, I have posted about my MIL who is in a similar situation as well. And I was wondering the same thing? They have been stating for almost 2 weeks now that her end of life is near. And now a week again has come and my MIL is still holding on. This has been very distressing to my husband and his family because they have been told different things by the different staff and hospice workers. My MIL is no longer able to eat or drink, she is medicated for pain, and randomly will open her eyes, she also has had the release of fluids the past 3 days. I know no one can predict exactly when it will occur, but one thing good has come out of it and that is that my MIL side of the family have now come to see her and are actually speaking again after years of being apart. It is been a tough couple weeks and we have been told from one day to the next everything could just change and we are just continuing to visit with her and pray for her in the mean time.
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robandjane Aug 2022
God is in control and I know He knows the day and time we will be taken from this earth; but yes, it is so hard not knowing.
I am thankful to read that your MIL's side of the family is speaking again; what a blessing that is. My husband's sister/brother came out when our kids did and it had been between 11-16 years since they had even spoken with their niece and nephews. It was good to see them talking and 'catching up' a bit.
I will keep your family and your MIL in prayer that she pass soon; but not before all that needs to be said is spoken.
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My husband was under hospice care in our home for the last 22 months of his life and was completely bedridden.
Hospice told me 3 different times that they thought he was transitioning over that time, and he just kept on living.
It wasn't until the 4th time that I knew that this time things were different, and knew that in fact this time he actually was transitioning. I was told that he would be dead in 3 days and he ended up living for 41 days before he died.
So the bottom line is only the Good Lord knows the day and time that He will call your FIL Home, and hospice doesn't always get it right try as they might, as they're not God.
So just enjoy whatever time you have left with him and make sure that you leave nothing left unsaid.
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robandjane Aug 2022
You are so right - only God knows our day and time. I am sorry you had to go through the long goodbye; but thankful you got so much time to say all that needed saying. I will just keep praying for God's will to be done and make every day count. Thank you.
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AgingCare has an article on the End of Life Rally; here is a link to it:

https://www.agingcare.com/articles/when-loved-ones-rally-before-death-185452.htm

To have 'false hope' with an elder who has severe dementia is not a reasonable thing, really, because there is no quality of life left for him as it is. My mother passed in February with advanced dementia and I prayed for at least a year for God to take her, not to extend her misery & agitation, honestly. Hospice helped a lot with that by giving her Ativan at .5 mgs as needed, and then increasing the frequency as needed, too. Mom wound up having an unexpected huge decline one day, went into her bed in a semi comatose state, and passed one week later to the day. But she'd had a rough couple of years before that had happened, so I was relieved her actual transition was quick. Her heart wound up giving out, plus she was thoroughly exhausted from fighting with her dementia for nearly 6 years, the poor soul. Up until the day she'd taken to her bed, mom was the 'life of the party' in her wheelchair, yucking it up with the other residents in the activity room, eating her meals & participating in the arts & crafts, etc.

I know how hard all this is. My father only lasted 19 days with hospice care, mom it was 2 months and 1 day. I hope your dad has no pain or suffering during his final days on Earth, and that you're all able to say your goodbyes during his moments of 'terminal lucidity', which is what the 'rallies' are called. Best of luck to you.
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SoLost21 Aug 2022
Your reply could have been mine, nearly to every detail. My mother also left us in February after a 10 year battle, the last 2 being so hard for her. I prayed, like you, as well, for at least a year that God would not let her suffer because she didnt deserve it. My heart is broken but I know she no longer battles this hideous disease. No one should ever have to live like that. I wish us all peace and courage. 💫
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Days or weeks. The same happened with my husband. “ the lull before the storm”. Sending prayers💜
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Perhaps a few videos what you can share with interested family members will permit them to see what you see and offer ideas on how they can assist in helping him to transition. You may only hear crickets, but it gives them insights so that they can understand, dementia "showtime."
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Just relay the information that you have. No one knows a person's expiration date. They can only share info that is what has been experienced in the past with other patients. There will be family members that accept what they hear from you and those who are not ready to let go. Just be honest and share what you are told.
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Hospice gave me a booklet about the dying process and behaviors and conditions to look for were broken down into sections like "two months to go," " two weeks to go, " "two days . . . ," two hours . . . ". I used to re-read a section of the booklet and then observe my husband's behavior, lucidity, coloring, etc and thin k, "Well, not today . . .".

The last few days I "slept" on the floor, waking up every hour or two to try to administer medicine if possible, and on one of those wake-ups it was very quiet because he had died.
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robandjane: My sister in law had dementia in the form of Alzheimer's. Once she had, unfortunately, contracted the Novel Coronavirus, from the onset of transitioning, she passed on or about one week later.

My 102 year old cousin had taken a fall about 18 months ago. Her son telephoned me last week (at mid week) to let me know that she was transitioning. I got an opportunity to speak with her. She passed away two days ago. Prior to the fall, she lived alone.

Prayers sent to you both at the most difficult of times.
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That description could be my wife. They suggested hospice for her but then she got a little better. (Eating more). With her family history it is going to be a long process. She is bed bound and speaks very softly. They told me hospice is for only about 6 months in my wife’s case I think it will be longer. The nurse comes once a week and another nurse gives her a bath. It is just difficult for me watching the whole process.
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My mother stopped eating and drinking on a Friday. Wasn't very communicative on the Saturday, then unresponsive for six more days before her heart stopped. I was with her 24/7 for the last weeks of her life (Except for visiting care and visiting hospice) and I still didn't get say Goodbye. I think she passed her spirit to me on that Saturday, then let her body shut down naturally.
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My mil went 18 days without eating before she passed. She had a rally on day 15 and talked all day long. She verbally relived her entire life. But she wasn't aware of anyone with her and wasn't addressing us. After two weeks of hospice telling us that they didn't understand why she hadn't passed yet, the nurse asked me if I could think of any unfinished business that she might have. One thing came to mind -- she had wanted my husband and I to go to Walt Disney World after she passed. So I went online and bought tickets. I went to her and told her I'd just bought our tickets for WDW. She nodded her head -- affirmed that she heard me! Within an hour, she had passed. So, is there some unfinished business that your FIL needs closure for before he allows himself to pass?
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My mother in law went years. She had several strokes in the care facility and they revived her at her daughters direction. She actually died several times. She was in the home for over 10 years. My wife (her other daughter) was furious because they would not let her die. She also had Alzheimer’s and had no clue who anyone was.
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sp19690 Aug 2022
Wow. What a tragedy she was forced to live like that for 10 years because one daughter couldn't let her go.
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For my mom, it was about 10 days. Her cancer caused her to have a series of mini strokes. My last coherent conversation I had with her May 13th of the year she died. She went into hospice two days later and she died May 25th. My dad suffered from COPD, and his last attack hit him suddenly and he died instantly. There was no transition for him. It can come quickly in some instances and take a long time in others. There really isn't a definitive answer.
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