Dad has never been formally diagnosed with Alz by a neurologist, but his PCP and obvious hallmarks have lead us all to that conclusion.
In the last year he has gone from using a walker and needing a bit of help in the bathroom and dressing, following conversations fairly well and having only a bit of trouble finding the right word, to---using a wheelchair, not being able to attend to any of his ADLs (activities of daily living). He also has begun to forget friends, but can still mostly identify family. His ability to follow conversation is gone. His sentences are fragmented and confused. He makes up stories ("this is such a nice school that we're staying in"--he's in assisted living with Mom). He has started sleeping more and more. The one thing he can still do is feed himself and remains friendly to those looking after him.
I know there is no timeline for ALZ, but it feels like he's been in a steep decline in the last month. We'll be visiting with his doctor tomorrow, privately. From your experience, when should we be calling family to come in and say goodbye if they want to? No one has a crystal ball, but I'd hate for some of his children/grandchildren to miss an opportunity.
Thanks so much!
We did that with my mother-in-law who is now in her final stages of life ( like a couple of days or maybe hours, only God knows when she’ll be taken home.)
I found out in late November of 2012 that my youngest brother had terminal, metastatic cancer. I immediately asked for the time from work to go and see him, as it would not mean anything to either of us if he passed and I hadn't seen him before that.
I was there to celebrate what turned out to be his last birthday in early December. He then passed away in early January. I was so grateful to have seen and hugged and given my love to him, before his passing.
I do think that often family members don't fully understand what dementia does to a person. They may be thinking that their loved one will just be forgetful, not recall some things from the past or have no short term memory, as their condition progresses. What they don't realize is that the dementia patient often loses touch with their surroundings, is not oriented to place and time, may stare into space without the ability to even know they are being spoken to, etc. They may also make repetitive movements, noises, sounds, and even be agitated for no known reason.
The way it broke down is this: Her brother (my uncle) chose to come sooner, for Mom's birthday which was the 4th of July. Mom was well enough to go out for her birthday, which was the last time she did that with anyone. She went into a serious crisis the day after he left and died two weeks later.
Two sisters came early (on both sides of my uncle) and came back again a few weeks later to be with Mom at the end. My brother was planning to come at the end of July but moved his trip up to see Mom while she could still talk to him. One sister didn't come at all and claimed later than she had no idea Mom was so close to the end and nobody let her know. (Totally untrue, but she was unhappy with her choice not to come and needed someone else to blame). I think everyone else was satisfied with the choices they made and it turned out best for Mom as well.
There will be indications when he is "Actively Dying"
The important thing is and this what you may have intended with your question..When to get family there to see him while he is still aware of himself, his family and surroundings.
With the holidays soon here you might want to arrange something around the holidays. But how well does your Dad do with large groups? I know everyone will want to see everyone else but this might be overwhelming. I would keep visits so a few people. And keep the noise down as that can be frightening. You can all gather for a lunch or dinner later. Or leave it to individuals or individual families to make the visit on their own time, but you might want to stress the decline and let them know if they wait to long he may not recognize them.
(By the way the "making up stories" he is not making up a story, he can not find the word that describes where he is, a type of Aphasia maybe)
And since this is me responding....
Please talk to his Doctor about...
Hospice. It is never to early to begin that discussion.
Decide now if you will use a feeding tube...I strongly discourage that.
Also..
Discuss with the AL facility he is in now will they allow the use of equipment to move him (Hoyer lift, Sit-to-Stand) some will not allow it.
And I have to ask..How is your Mom doing with all this? I do hope she has a lot of support as well.
Grace + Peace,
Bob
You shouldn't tell them to come anyway, you know. As long as you've made your father's condition understood, and as long as family members know that they are welcome if they choose to come, you mustn't go further. If they can't or don't want to for their own reasons, they'll resent it.
I think what I'd do is send an email to all containing an update, but save any discussion of visiting to individual phone calls that you might receive after the update. Much easier to play those by ear.
Has your father actually asked to see anyone? That makes a big difference, of course.
Now my LO has lost all verbal skills. I'm so grateful for the visits we had where we talked about the good old days. Even though, her short term memory was gone, she still recalled her teen and childhood years. Then, that's gone. So, I wouldn't delay.
Some will want to see him sooner, other may wait until the funeral, but it is important to give people a choice. My Aunt did not come when Granny was dying, she chose to wait and come for the funeral. She knew she could not afford two trips and felt it more important to attend the funeral.
My children (at that time in their early and mid-30’s) wanted to visit Nana; my daughter more than my son. My mother could get really nasty. She also spent 90% of her conversations with me accusing the entire population of the facility of sex orgies. I did not want my kids or especially my grands exposed to that.
Invite them to visit according to their their own schedules and desire to see him. Don’t press them or make them feel guilty for not visiting. My mother was especially nasty to my son on one visit and I told him he was free and clear of visiting her again. Don’t make the visits hours and hours and don’t have everyone pile in at the same time. My mom was stressed out when we all came to see her at Christmas once. She nearly attacked my husband when she thought he was a strange man.
The best you can can do with this disease is play it by ear. There are no hard and fast rules.
Global Deterioration Scale for Assessment of Primary Degenerative Dementia
https://www.fhca.org/members/qi/clinadmin/global.pdf
Technically, the death process starts when the patient can no longer swallow. They either have to be artificially nourished or allowed to pass as painlessly as possible.