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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.

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I have no experience with this nor any factual knowledge- only what my gut and heart are saying - and as we know decisions made from the heart aren't alwsys right, although usually well intentioned. I wouldn't be able to leave a loved one like that. I'm picturing my adult disabled son whom someday will need to move to a group home - hopefully not for a long time. Anyhooo- my plan is to acclimate my son slowly. Since you can't really do that with your husband - perhaps you could do it in reverse. You slowly start to stay for shorter and shorter periods as you husbands adjusts. Of course this is risky if he continues to rely only on you and doesn't adjust. I would just have a hard time leaving someone in a new, unfamiliar setting and knowing how confused and possibly afraid they may become. Sorry - that's probably not helpful to hear. But know that you are doing the right thing for both your husband and yourself no matter which way you choose to go.
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From what I have read on AgingCare, it is common to remain away from the facility for two weeks.... that way hubby can learn his way around the facility, learn who is the staff, learn where the dinner room is location, and settle into a routine. And maybe he will make some new acquaintances, and join into the activities [or sit in his room and watch TV]. He will need to learn a new normal.

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.
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Not a good idea to stay there. The staff needs about two weeks to change his focus to them instead of you. They need to manage the medications. Xanax is essential to manage anxiety. They need to have a definitive diagnosis--Alzheimer's or Lewy Body or Vascular or Parkinson's are all treated differently. Be sure they have detailed information so they can give the right meds. If you refuse meds, he won't be there very long. Certainly you can call to check his progress. I've been through this more than once. But give them those two weeks to settle him in.
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This will be a difficult adjustment for you both
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
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No personal experience but the general consensus seems to be to stay away for the time the staff suggests for the reasons given. Hard to contemplate but you want the best for your husband and you are exhausted.
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.
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Yes, stay away until facility tells you ok. Went through this with mom. Twisted sissies visited every day thinking it would be easier on mom. It only made it more difficult as when they left mom would start the transition all over again. Mom is in memory care, a locked area. Her hubby is in assisted, same building, they even told him he had to stay away for awhile.

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.
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Okay - so definately don't listen to what I said! These are smart women with the experience in this type of situation that I don't have. I am sure they're right. I also agree with the suggestion to perhaps get a little ways away to resist any temptation to visit. Where I live the beach is 90 mintes away - far enough to be a respite but close enough that any emergency could be attended to. Is there some place like that you could get away for some of the time?
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I don't have any experience in this area, but I just wanted to say, Carol, that your husband is lucky to have you in his corner. And we're all lucky to have such wise and wonderful fellow caregivers who share so freely of their own experience and wisdom. I'm always amazed by the knowledge on these boards. Good luck and please let us know how things go - we care.
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Carol, I have a related experience. I had just moved to a new city when it was time for my toddler son to have an operation on his cleft palate. I had been doing research. I found a study that concluded the biggest factor in children's long-term social recovery was how long they were hospitalized -- the longer the hospital stay, the worse the children did and the more they were separated from their parents the worse they did. So I interviewed plastic surgeons on that basis. One said they kept patients 2 weeks, with no visitors. Another said 5 days, and no visitors. I found one that said 3 to 5 days and open visiting. That is who I chose.

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?
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Thanks to everyone for the really helpful comments. Seems like I must make my own choice and hope it goes well. Last month, I did leave him for one week in a different AL when I had to go on a trip for my brothers memorial service out of state. He was unmanageable there regarding which bathroom to use (went into the ladies), eloped once but didn't go far. Found a man and told him he'd been kidnapped and wanted him to call the FBI!
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!
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Carol are you sure AL is the right placement for hubby? Have you considered going straight to a memory care facility? It is a very hard decision to make for the one we love and have spent our lives with. But the things to weigh include his safety (unsteady with Zanax) and whether you want him to be controlled with medications. Medications may finally be the only way to go and Zanax may not be the right choice.
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.
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Hello all,
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.
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Carol, my mom takes seroquel and it worked very well for her and the pacing and paranoia. She started with 12.5 mg once a day about 4:00pm and gradually increased to 75 mg once a day at 4:00pm. This is not the same for everyone though. If it does not work for your hubby the doc will try something else. My mom also tried ativan which had the completely opposite effect as intended. Some have great experiences with ativan. Have you tried something other than xanax, it could be it is not working as it should for him. Sometimes a geriatric hospitalization is necessary where they can monitor them for a period of time is necessary to determine what meds will work best.
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Thanks gladimhere
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
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Well, today is the day. I'm sitting here this morning so anxious about doing this. I just gave him .5 Xanax and he'll get his Seroquel at noon. I'm planning to take him about 10:30 and staying till lunch time. Eating should be a good distraction. Then I'll leave and try the 2 day away time.
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.
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Carol I hope all went well with the transition. Please be prepared to stay away longer than the two days, it may not be enough. Do not leave the medication changes up to the AL staff. if you don't like what you see ask questions.
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I'm no expert, but have the medical professionals discussed any other type of anti-anxiety med? My loved one didn't do well with Xanax. She takes a small dose of Seroquel at night only. She takes Cymbalta daily that is for depression/anxiety/pain. She is alert, content and co-operative. I'm sure there are other possibilities and combinations of meds. Everyone is different, but I would really watch to see how the meds work for him and not hesitate to speak out if they are not working. I agree with Veronica91. I would not let the AL staff be in charge of whether meds are working. Their input is good, but I should be in charge of that, along with the doctor's orders.

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,
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Carol - I agree with Veronica about the medication changes. I really don't want to add anything for you to worry about but feel I should tell my experience with this. When my mom when into AL the staff and moms new doctor were switching up her meds left and right - without talking to me in spite of the fact I am moms medical proxy AND I told both that I wanted to be notified prior to any changes. They made several changes that were very poor choices- which I could have advised them on had they called me. So at the very least, ask them to notify you prior to any changes being made - you are the expert on your husband. Good luck today. I'm sure you'll have some difficult moments but know you are doing what's best for the both of you!
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Well my friends, you are all so right on when it comes to many things about care. My hubby was in the facility about 2 hours when someone came in the door and he bolted out almost knocking her down. He ran away with them running behind, calling him. A family member visiting someone helped and got him in his truck and drove him around till I got there. They cannot take him back.
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.
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It sounds like he definitely needs a locked facility. As for visiting, is there anyway you can go see him, but not interact with him, maybe disguise yourself so he won't know you. That way you can at least reassure yourself that he's ok.
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Ah sweetie, my heart is breaking for you! I always use to believe there was "a plan" for each one of us - a devine "big picture" - but long about now I'm sure you're thinking "really"? and "why does this have to be so hard"? So I don't know anymore - about "the plan", what I'm suspose to be learning from and the heart ache from dealing with my demented mother. Maybe this is crossing your mind or maybe your just too worn out to be thinking much of anything beyond "what now"? or "how can I fix this"? But know your being thought of with positive thoughts and energy being sent your way. One way or another it will all work out in the end - it always does.
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Mistyann, I was thinking to send someone else to visit. I could send some willing friends who he wouldn't recognize forsworn visits and see if he is okay. Right now, I don't know where this is all going.
I guess my subject of how long to leave without visiting is not the question now. I just don't want to start another new post, too confusing and too much to explain.
I'm not up to it today.
Thanks for your comment though.
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One other thought - is it possible for you to move into AL with him? I know that's probably not ideal for you and not a complete break but at least there would be help for you by way of staff - with his ADLs. After a while your husband may feel secure enough that you could get out and do things yourself. After looking after my uncle for about twenty years - Parkinson's and later dementia my aunt moved with him to AL - even though she was in excellent shape and could have easily been living somewhere on her own. It was the only way uncle would stay in AL. After a couple years he needed more care and was placed in a nursing home and she moved into Independent Living - and visited him regularly. Sadly, after a few more years my aunt suffered a minor stroke but is now doing better. Currently they are in a new state, aunt living with my cousin and uncle in a VA nursing home - she still visits often.
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Thanks rainmom,
Moving in together would be excellent except it takes a great deal of funds. I did a tour of one about 5 months ago and it was $4200 for hubby and $2200 for me on the independent side. We could eat together and spend time with each other anytime but I'd still be able to,leave and do thing without having to take him or worry about where to leave him.
Unfortunately we don't have $6400 lying around and I would also need more than that because of insurances, co-pays, gas, and other things I would need to live semi-independent.
Thanks though for mentioning a great idea. Maybe it will work for someone else.
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Carol just hugs tonight while you catch your breath and plan the next move.
Something will turn up. You are being very proactive and not just sitting home whining.
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Thanks Veronica,
Today has Been phone calls and trying to connect with admitting Doctor. Also, my hubby took off from home this morning and I spent a few horrible stressful minutes before I found him about a mile down the road.
This is a multitude of emotions. I go from anger to sadness or sheer fear!!
Not sure when I'll find a place but hope it's at least in the next few days.
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Carol, $6,400 sounds cheap for both of you! Here my mom and her hubby in a very similar situation. My mom is paying close to $7,000 a month for memory care, her hubby about $4,400.00 a month. And my twisted sibs decided moving them to a facility would be cheaper than keeping them at home?!
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Carol,
I'm sorry this has had such a turnaround. I'm hoping that you will be able to find a secure facility soon. Do you have anyone to help you until then? I'd ask for assistance from his doctor, family, anyone who could help get you through this transition period.
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Carol, thanks so much for taking the time to update us. This whole thread will be very valuable for others facing similar situations.

I am so sorry for this challenge you are facing!
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Carol, a friend of mine had similar problems. He did not want to place his wife until there were several times that she just left. Then the constant battles trying to get her to clean up. He was very fortunate. He took wife to the ER one night, told them her hpcare was not at all manageable until they got her meds that would curtail her behavior. From the ER she was admitted to a geriatric unit. She was there for two weeks. The meds helped but not completely. She was still a flight risk and a danger to herself. Fortunately the state psychiatric hospital, which also has nursing home, and a very good facility, had a bed come open. She has been there almost two years now and content most of the time. So, check with hubby's doc who should be able to recommend appropriate level of care and where to find it. Hubby is seeing a geriatric psychiatrist, isn't he? If he us, it may be worth getting a second opinion on what may work.
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