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.
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.
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.
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.
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.
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.
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.
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.
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.