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CarolC75 Asked May 2016

Should I stay with my husband when he is admitted to assisted living next week?

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.

CarolC75 May 2016
Good idea Babalou, I do have a physical on my list. My IBS has been so bad aggravated by all the stress. I probably will need a colonoscopy...ugh!
Anyway, I do feel very run down and tired but that's to be expected.
Thanks for the suggestion!

BarbBrooklyn May 2016
Carol; I'm going to make a suggestion. One thing that you could do with your "free" time is schedule all those doctors appointments that you've been putting off. I say this because when my aunt finally got my uncle, with Alzheimer's, and a wanderer he was too, she insisted on visiting him every day. She dropped dead of a heart attack two months after he was placed.

Had she put off her "maintenance"? I have no idea. But I think that YOU should pay a visit at least to your primary and go from there.

All good things to you!

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CarolC75 May 2016
Thanks Mica393,
I've had him by my side for at least the last 4 years even though he was diagnosed 9 years ago. It's a strange feeling to have him gone and trying to figure out what to do with myself.
I have errands today and it's Memorial Day too. I just keep busy and I know that I will soon get into a new routine of my own.
The facility that he is in has no way to "spy" as you did. If I could though, I would. 😉

micalost May 2016
Carol your husband sounds like my mom was when I hired at home help. She would sit there all calm and smiling and the aid would turn her back and ZOOM she was out the door and down the hall !
Your feeling of being a bit lost will stay for a very long time- this feeling is still with me for many months after placement.
In the beginning I sometimes would go to the place and "spy" on mom, keeping out of sight and observing how she was getting along.... it satisfied me more than a phonecall and I could see her without disturbing her.

CarolC75 May 2016
Thank you Rainmom, these are things in life that are not easy. You are right, we just do the best we can hope it all works out.
I've been relaxing today and feeling a bit lost but I am much calmer. I think it'll be okay and will take time for the adjustment on his end and also mine.

Rainmom May 2016
Carol - in three ways your last post reminded me of my son with sevear autism and the struggle of loving and living with someone with a disability - be it ALZ or autism. For a number of years I tried to keep my son in daycare after school. Some times it was a matter of days or sometimes months but it always came - the dreaded phone call - saying he couldn't stay. Then there's the constant "plotting". My son would seem to be sitting happily, looking at a book or watching tv but if you watch closely you can see his eyes scanning the room, shifting to you or another person to see if your paying attention- and when the moment is right, he strikes and gets/does something he shouldn't. And lastly - the issue of others underestimating them. My son is very handsome - it's not just a mothers pride - everyone says so - ever since he was a baby and everytime I'm out with him, someone comments on his blue eyes or his thick wavy hair etc. my son is also very calm and sweet with a killer smile. The result? Either he manipulates people to do everything for him - or he lulles them into complacency- and again he gets exactly what he wants. It's exhausting at times but what can you do but continue to love them and just do the best you can. You've both my sympathy and my admiration!

CarolC75 May 2016
Thanks once again for the comments. Yes, it was pretty upsetting to get that phone call and got my heart pounding for sure! I was so glad they handle it themselves unlike the AL who calls and says come get him!
I am actually glad it happened though because they did add extra staff to make sure it doesn't happen again.
I'm hoping the medication (Alprazalam and Seroquel) will keep him down enough to settle in. Mica393, it's amazing to me it could take "months" for your mother to adjust, wow! That seems like a long time but I can see this is going to be another learning curve for me. I'm just hoping it doesn't take that long.

Another problem, my hubby (Bob) presents very calm and likeable. He doesn't even look like a person who would be there. But I think the whole time he's looking for an escape plan and people don't realize it. How in the world can he put that together when he can't even remember what happened a few seconds ago?!

Well, so far I've learned a few things. 1) there's a BIG difference between an AL and a memory care facility. 2) it's okay to lie to a person with Alzheimer's so they can get some help. 3) don't trust what you think they might or might not do
4) some things like how long to stay away after admit cannot be determined till the very moment family and the healthcare workers think it is the right time.

I'm still not knowing when I'll go back because I wouldn't want to set him back to trying to get with me again. I'm thinking it could be almost a month...but just guessing!

I'm feeling at this point, I don't know much...lol!

micalost May 2016
omg the stress of that sent you to the moon i am sure!!
Yes, better it happen now so they will spread the word. My mother fell the first hour after I told them she was a fall risk! They learned their lesson.
I bet they will remedy all the windows now (amazed they hadnt already)
Need a camera on his bed also, like my mom.
I sure hope they get his meds settled and in a few months so will he. It took my mom a few months and now she likes it.

gladimhere May 2016
I am surprised that the facility did not keep better track of him when he was just moved there. I agree with Babalou. Sometimes facilities think family members are exaggerating the behaviors of the elderly so do not take precautions that they need to. Heck, my twisted sisters thought I was exaggerating my Mom's behaviors! And with the move a year ago now, boy they have received an eye opening, shocking dose of reality. Twisteds thought the adjustment would take a few weeks "from what they read". Mom is still adjusting. So sad.

freqflyer May 2016
Carol, thanks for the update, and that you found an excellent memory center for hubby. Oh my gosh, I couldn't imagine getting a phone call saying hubby had once again decided to do things his own way and got out. Whew.

BarbBrooklyn May 2016
I think it must be the case that facilities think that families are exaggerating their loved one's escape capabilities. I also think it's a good thing that they got to see him do this for themselves!

Rainmom May 2016
Carol - wow. Tough day. I'm a bit surprised that your hubby still managed an escape given how upfront you had been with them regarding his history- and his determination. My father tried a break from a rehab via a window - got the screen off and one leg out when he was caught. In my dads case and I think yours too - this initial escape was a good thing in the long run - after that they watched my dad like a hawk, had his "mug shot" posted at every entrance and emergency door labeled "flight risk". I'm sure the facility has put together a plan for extra eyes on your hubby as well! As for you - sleep in, try to both relax and stay busy - do some self pampering. I imagine there will still be some challenges ahead but the staff at the facility will handle it.

anonymous158299 May 2016
that is so cool . the only thing i would do differently is shred the fence and strangle the clueless nurse with it .
watch alice cooper do " vengeance is mine " on youtube if you want to dig my mindset ..
it sucks when all of the crazy people label you as crazy .

CarolC75 May 2016
Well everyone, the actual transition went well into the memory care facility. He walked right through the door with the nurse and I left. My daughter met us there and then we went out and sat in the car and talked for awhile. I was so nervous and just needed to unwind a bit.
Then, I went home, had a little lunch and my sister came over so we could sit together and talk awhile.
While she was here, I got a call that he had escaped the place through a window. He ran down the street with 4 staff on foot and one in a car after him! The police were called and they finally talked him into getting into a car and brought him back.
The lady who called was so nice! She told me he was talking with staff, having some coffee and a cookie. She said they were used to such things and she wished she didn't have to call me. Anyway, they had everything under control and had him one-on-one with staff by the time she called me.
This whole thing is a nightmare! I'm just hoping that he'll settle down, begin to trust some of the staff and become familiar with some of the other people there.
It really is a wonderful place, the staff is confident and friendly and it's like a miracle that he got into such a place.
Well, it's certain I'll be staying away for at least a week but I'm thinking it will need to be even longer for him to adjust.
I've got to get to bed tonight and tomorrow is another day. Sure feels strange without him here, but peaceful too.
Once again, I'll keep you all posted...and glad I have you to talk to!

BarbBrooklyn May 2016
Carol, I'll be thinking about you today! Good luck!

Veronica91 May 2016
Well done carol. your persistence has paid off. Good luck tomorrow

CarolC75 May 2016
Thanks for those encouraging and comforting words. I'll definitely let you all know how it goes tomorrow.

blannie May 2016
Carol I am SO happy for you and your husband. It sounds like you found the perfect place for him!! And it sounds like they totally know what they're doing in regards to how long you stay away.

Take that week of respite to do some things you haven't been able to do. Go out for lunch with girlfriends, give yourself a manicure...read, sleep, whatever you love to do.

BarbBrooklyn May 2016
Aw, Carol, that is SUCH good news! and thanks so much for coming back and telling us what worked; we learn from each other here, and your's is a very valuable experience for us to be able to point to! Good luck tomorrow.

Rainmom May 2016
Seems "everything happens for a reason" may definitely apply here!

CarolC75 May 2016
Well my new friends, I'm so fortunate. Today I happened to call a secure memory place that I,had talked to about 2 years ago. They are expensive and required 2 years of private pay before they would allow Medicaid. They were off my list but after yesterday, as you all know, I was desperate so I started calling everyone even those I had called before.
I received a call back from this wonderful Alzheimers Memory care place and she said they did have some policy changes and would now accept Medicaid. At 3:00 pm she asked me if I could come right in and start the paperwork. I was shocked because it's totally secure and very nice.
So I went over, completed the paperwork and met the staff. Tomorrow I go complete the contract and finish a few more forms and the actual admit will be on Friday.
They were so confident that he will do fine there. Everything I said to them about his escapes, his fixation on me and his paranoia was brushed aside. They said that is what they do and that there is a huge difference between AL and Memory Care. They weren't worried about anything.
I'm so excited! I keep thinking something is going to happen since the other 3 have failed but again, they assured me it will not fail there.
As usual, I will keep you all posted about the admit and how it all goes.
Also, back to my original question (seems so long ago!) about how long to stay away after admit, they recommend to start with 1 week and if he still hasn't leveled off a bit they will recommend another week. Guess that part is to be determined.
Thanks my friends...you all are awesome!

gladimhere May 2016
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.

jeannegibbs May 2016
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!

Sunnygirl1 May 2016
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.

gladimhere May 2016
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?!

CarolC75 May 2016
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.

Veronica91 May 2016
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.

CarolC75 May 2016
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.

Rainmom May 2016
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.

CarolC75 May 2016
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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