I'm in a dilemma as to what is the right thing to do. I've made the decision to finally admit my husband to AL but still there are so many loose ends to clear up.
I have to get the doctors to send the correct orders for meds. He's been on Xanax for about a month. It has changed him 80% as far as weakness, mumbling, stumbling around, and continuing to be defensive, paranoid, and compulsive about many things when he's awake.
The AL won't keep him if he continues to pace and trying to leave the building. They said it can be fixed with medication and he needs the Xanax and that the doc needs to add an antipsychotic. I have questions about all these things too.
Since my husband has been so attached to me, it's been suggested by the AL that I stay away from him for at least 2 weeks or longer. They said they can't "make" me do that because I have a right to come in at any time. But they said it would be best if ALL family would stay away and let him acclimate to
the new surroundings.
On the other hand, I have others telling me that he will likely do better if I stay with him most of every day until he gets used to the place. They say as long as it takes and that might be up to a couple months...this advice from friends and a couple caregivers I know.
I'm willing to do whatever is best, I just know I can't manage him at home anymore. He takes constant redirecting and the only break now is when the Xanax puts him to sleep. But I'm very burned out, it's been several years! But I could stay about 7-8 hours in the AL if it would help him adjust.
Please, if anyone has any experience about which way is best I'd sure like to hear how it worked.
Sunnygirl and others were correct about him needing a secure facility. With this experience, I would now tell anyone else the same answer, especially with a previous escape. These people knew about the other escape from the first facility but they were willing to try and help me out. However, the front door is just too close right in their living area.
So,here I am back to square one and having to care for him myself. I'm 75 years old and I just don't know what to do but all I know is I can't keep him indefinitely. I'm too worn down at this point.
I Have many phone calls to make today and see what I can find. The owner of that facility was very nice and felt sorry for me and said he only knew of two facilities in our area which are about 2-3 hours away.
After my phone calls this morning I'll know more.
I'm so glad I have you all to talk to, it helps, especially this morning. I feel pretty lifeless. Once again, I'll keep you posted.
What stands out for me is that it seems that he is not in a secure facility. After wandering, I don't understand how another non-secure facility would be able to accept him? Do they have plans for preventing him from wandering? Are they relying solely on his meds to prevent him from wandering? I'd discuss that with them in detail and get specific answers. That would be my primary and first priority,
The doc did decrease the Xanax to .5 as needed. Then I understand the AL will call the doc when/if they decide meds need to be adjusted. It'll now be taken out of my hands.
I Have no idea what to expect but I'll let you all know how the 2 days away works or not.
No, we've only tried Xanax until yesterday. Today though I didn't give him any Xanax, except for tonight I did give him e Seroquel and a 1 mg Xanax and he should sleep well.
I'm thinking to wait till Tuesday to put him in the AL because I need to call the memory doc and tell her how much better he did with the Seroquel without the Xanax. She will need to change the orders or they will be giving him 3 Xanax per day and that'll make him like a vegetable again. So I'll have to try and make it another day before his admit but it does seem best.
Thanks for your comment!
Carol
Yesterday we met with the memory care doctor who will become his primary. She put my husband on Seroquel with the option of half the Xanax. Yesterday afternoon when we got home I gave him those meds and he spent from 1:30 to 7:30 completely pacing around the house, very unsteady on his feet and unable to talk where we could understand him. Someone had to stay with him all the time. Finally at 7:30 he fell asleep and two people had to get him to bed and he slept till 8:00 this morning. I realize this is another subject which I will make another post regarding the medications.
Keeping with the original post here, I asked the memory care doctor what she thought about whether to stay with a person in the AL or stay away for a short time. Her answer was interesting: she said that Alzheimer's patients do have the capacity to determine time. You could stay away for a few days and it might seem like an hour or 6 months. She suggested that a good amount of time would be 2 days but call a couple times a day to see how he's doing. Then visit and see go he responds and then stay away for about 3 days, check by phone and see how that works. After he seems somewhat acclimated to the new surroundings, then visits can be at anytime. When he keeps asking to leave with you or asks to go home, then stay away a bit longer. She said the problem is that every Alzheimer's patient is different and no one treatment works for all.
Hope this helps with anyone else experiencing the need to stay with a loved one or leave them with the AL for a short time.
Thanks again for all your comments. I sure appreciate everyone who takes the time to comment on this forum.
I'll continue to keep you posted on this subject since Monday will be time for me to do the admit. Think I will stay away only 2 days as suggested and just see what happens.
Nobody has any experience with antipsychotics.
They work differently for each patient so the Dr just has to keep trying till they find the right combination. They really should be supervised by a geriatric psychiatrist who is experienced in the dementias.
The goal is to achieve a form of socially acceptable behavior were the patient can function within his/her capabilities and be co-operative with the caregivers and if possible interact with his peers.
Your goal is first to loose your guilt for placing him. You did not cause his illness. You have given him the best care at home. You have recognized the need to seek a higher (more professional) level of care. You did not train for this job and have seen your limits. It is not a case of "I can't do this anymore" it is a case of
" it will be better for him if I don't do this anymore" You are not giving up on him you are seeking the next step to keep him as content and comfortable as possible as his illness progresses. You would not make him walk on a broken leg in the grocery store when there are wheelchairs by the door.
The number one rule in caregiving is "Take care of yourself" You are doing that so you can continue to care for hubby just in a different way. You are the only person he has got on his side.
They refused to consider keeping him until he could get some better meds for his paranoia and pacing.
So I found this other place where he'll have his own bathroom at least. And I did plan to do trial periods to get him used to the new place. I did two days of 4 hours each but the last day he was able to climb their fence and was out wandering the grounds when I got there. They said this is all trial and if he elopes again, they will not keep him. Now with the Xanax, not sure he'd be able to climb since it's made him too unsteady. Also, adding the antipsychotic might make a difference too, hopefully.
This is all so hard and so many things to worry about! I had settled it with myself to stay away for the 2 weeks but I'm so afraid it won't work and I CANNOT take him back home! I so need this to work.
I have the primary doc to fax over med orders so that will be done. The AL is ready and I'll go over Sunday to get his room ready with familiar items. I just don't know what else there is to do.
Thanks so much to everyone...I'll keep you posted how it goes and which way I decide to go about staying with or staying away.
As far as the medications, someone asked if I will be doing a separate post. Thinking about it...no experience with an antipsychotic so I probably will see if people know anything about how they work for the paranoia.
Thanks again...you all are great and so helpful. I love this forum!
I have heard anecdotal stories that no visitors for 2 weeks is best. I have not seen research. But without seeing empirical evidence, I would never ever leave my demented husband alone for 2 weeks. I was with him most of the time he was in TCU, and I stayed with him around the clock in the hospital. Of course, the difference there is that I knew these were not permanent stays.
When my mother had difficulty overnight in the nursing home, I spend the night in her room for a couple of weeks. The nh staff was fine with that. They would not have been able to keep her on that floor (instead of memory care) if we couldn't resolve the issue. Fortunately we did, and she sleeps through the night now.
I guess I'm in the minority, but I sure hope my family doesn't abandon me in a strange place when I'm befuddled.
Are you going to start another thread about the meds?
They need to bet acclimated to their new surroundings and develop a new routine. Staying away will help with that transition. When you call speak to staff, not your husband, that would also make it more difficult for him. Do you have a child or friend you have wanted to visit for a few years and have not been able to because of caregiving responsibilities? Do that now, you need the down time and the support you would receive will be helpful as you make this transition. It is going to be hard for you too.
Call everyday by all means and make sure he is being given his meds. You can even pick up his laundry from the front office but resist the temptation to peek in his room. if you have children you remember what a fuss the little ones made when first left with a sitter but once you were out the door the crying stopped.
Is the assisted living facility a memory care facility ? If not he may very well "elope."
My personal experience is that there is not much care with assisted living and you need to keep a mindful watch even if you do not see your husband during the initial two weeks
I noticed where my Dad lives, the fellows then to pal around, and go into the TV room to watch a sporting event together. My dad prefers to sit and watch TV in his room all afternoon probably tired from morning physical therapy, but he will go and join his dinner mates for supper.