Grief
The Decision for Assisted Living
Hi guys, this may be one of the hardest letters I've had to write. My husband is going into assisted living next week. As you know from past notes, he can be violent, something that in his right mind would never happen but feel at this point I can't handle this at home.
We have a lovely new place with an apartment for him and a level of care that
I believe he will be happy with. I have cried buckets and he is sort of
peeing everywhere so you can tell our level of depression and upset.
Think or hope that things will improve with the move. One of our daughters
is coming down to help with the move. Will let you know later how things go.
I do feel something of a failure for having to go this route but at some
point just can't maintain my sanity. With in home care, he will go around
the person to get to me so things are always in a turmoil. He does like this
place and the people are kind and lovely. His doctors seem to think things
will improve with the move, more stimulation and perhaps back to some level
of socializing that will help.
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I'm glad/sorry to read your note --- glad that you've found a good place for
your husband and sorry that it's had to come to this. YOU know you've tried
everything humanly possible (super-human, actually) to keep him at home, so
don't let anybody (including yourself!) make you feel bad about this move.
Hugs to you both.
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I know its sad that he's going away but you must take care of yourself. My
husband and I have talked about this at great length. I can see that it
will come to that eventually. I'll keep you and your husband in my prayers.
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I'd say that rather than "failing," you've succeed beautifully. Your success
lies in recognizing when the time was right to put your husband in assisted living,
making the arrangements, and doing your best to prepare him for the move. In
fact, if the truth be told, you've probably stuck it out far longer than was
good for you. But at least now you know you gave it your best, for as long
as you could, and I know that feeling is important to us all.
I know a number of formerly lovely, gentle PWP (and Alzheimer's patients,
too, who, in the throes of dementia, became violent. They can be very
strong, and of course don't know what they're doing. One person alone can't
cope with that, and as you said, a determined PWP will circumvent health
care aides. In spite of not thinking clearly, they can be very clever. We
all know what you've been dealing with, and not one of us would fault you for
making this very RIGHT decision at this time.
I'm sending you lots of hugs and warm wishes. Please feel free to write at
any time. The adjustment to the change will probably be the most difficult
part of all of this. It sounds as if you've chosen a lovely place that your husband
will be able to enjoy and feel comfortable in, after a period of settling in.
Let me say again, you've given it your best, and now have made the right
decision for both of you. I'm so glad the doctors are supportive, and it
sounds as if your family is, too. We're thinking of you, and are with you in
spirit as you get through these difficult days.
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Please don't think of yourself as a failure. Having worked for many
years in an ambulatory alzheimers facility, I have seen the agony and
quilt families go through. There is absolutely no reason for you to feel
even a trace of guilt.Placing your husband in a facility where there are
trained people all the time to deal with the multitude of problems that
arise from dementia. You are now in a position
that leaves you free to be there during the
on times and not have to physically deal with the off times. You will probably never get used to not being the primary CareGiver any longer.However your physical and eventually your mental health will greatly improve.
Many hugs to your and your family!
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You NEVER deserve to use the
word "failure". You are a survivor who has lost
herself in the circle of caregiving. Know that your husband
needs you "whole" to continue to see him through this
dreadful disease. Get your rest and I hope your
strength returns as your grieving process gets under
control. We canNOT control this disease & we don't
like to be a helpless CareGiver. The side-lines are so
hard to sit on.
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Do not feel guilty in any way about taking care of your husband;
you are doing the best you can; we have to do what we have to do.
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PLEASE, this is NOT a failure. You are doing what is best foir your husband, and
it is also good for you. We all know how you have struggled with his
illness, and that you want to care for hi,m ---and this is the best way to
do it now.
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Please DON'T feel like a failure! You certainly ARE NOT a failure. You've
spent years caring for your husband to the best of your ability. Now, you
just need some help. If that help comes in the form of a care
facility....that's what they're there for! And it's not as if you
abandoning your husband. You are just making sure he's going to CONTINUE
to receive the best care possible! And, with less responsibility for the
24/7 care of your husband, you will have more energy and be able to return
to being a wife to him, rather than a full-time CareGiver.
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I'm a couple of days late in reading your message, so I think the replies you've gotten pretty much cover it all.
As you may or may not remember, Mom (66/42) went to an assisted living facility, then a nursing home about 18 months ago. Although we ended up back in a home-type situation, the decision was the correct one for us at the time. Of the many list member responses to your post, I'd be sure to keep in mind the
following:
- Don't let anyone make you feel guilty. If (like me) you tend to make
YOURSELF feel guilt, DON'T. Channel that energy toward helping your husband adjust (but don't get neurotic about THAT either :) ).
- There will almost certainly be major adjustment trauma. I do believe that
seeing familiar faces can mitigate this, but in Mom's case the adjustment was
difficult in spite of everything I did. I was especially surprised at the
sudden onset of confusion she experienced.
- This change very well MIGHT improve your relationship. Soon after Mom
moved I realized that we had begun having real conversations again... the
caregiving was being handled by someone else and we were no longer exhausting
our social/communication skills dealing with the mechanics of getting her
through the day. I used the opportunity to learn some family history from
her--which also helped mitigate the confusion, etc. (Ironically, now that she's back home the communication has returned to the mundane. I'll have to see what I can do about that. : ) )
I'm not an expert on this, but I HAVE been through it, and I've got a whole
bucket of 2-cent pieces. Please let me know if I can help at all. Mom's mental state has also cleared up, so she may be able to help with the
patient-perspective issues.
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What a lovely note from someone who's been there. I just wish I could
fast forward for the next few weeks. your husband and I have been best friends, lovers, boon companions for about forever and this is the hardest thing I've ever done. I'm crying everywhere and he's peeing everywhere so we're awash, one way or the other. I know my pal well enough to know this is all going to be my fault so my best ploy is to try as much as possible to disengage emotionally (won't happen). Thanks again to all of you.
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I know this was one of the most difficult decisions you have ever had to
make. I think many of us have been concerned about your husband's tendency toward violence for some time, and I think you have made a very good choice. I hope he settles down well and becomes happy in his new home and that you can have a modicum of peace in your life. The reason I can keep Ken at home with
in-home care is because he is very easy to handle mentally. There was a time
he wasn't, and I came very close to finding another home for him, but he now
is hard to handle only physically. I know you are feeling the pain right now,
and I know you have done the right thing.
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This weekend through early next week we will be moving my mom, my PWP, into
an ASL. My sister, who lives with her, and I are no longer able to leave
her at home either due to her dementia. We have done our best for as long
as possible, but now she is no longer safe in her own home. It has been a
very stressful couple of weeks as we have weighed the decision and searched
for just the right place. I'm hoping that she will adjust and be happy
there, but you never know. I know the next few days especially and probably
the next few weeks will continue to be stressful for us both, but perhaps
knowing that someone is walking on the same path as you, though miles away,
will help. Best wishes for the move and transition.
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I just wanted both of you to know that I am thinking about you and
praying for you this week. You have come to a very hard decision and have
done what is best for your patients. Your love for them is so obvious, and I
am sure they will adjust well. I don't often think about being fortunate
these days where Ken is concerned, but your problems make me feel fortunate
that his dementia no longer includes paranoia.
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From the list and from the ALiving facility I've learned that things
are going to get worse before they get better. Even though he has had all input
into the decision this week he has been vastly confused. Please know that it
will be best for your Mom to do this as I know you've researched the facility
and know she will get good care. Amazing what a competent staff will mean to
a demented person though the person may not know this for awhile. Know I'm in
for a rough few weeks as will you be but we've been told this and think a
good staff can ease you and your family into it. I love this list and the
input from all of you has lifted my spirits so much.
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