AL move 6 days ago not going well at all

blylepinkard

Hi everyone - I moved my step-dad to a very expensive, well-regarded retirement community last week, 15 months after my mom died. He has vascular dementia and I have been caring for him daily since that time, no help from his sons. I work full time and it's been a hard year.

He hates the retirement community. He calls anywhere from 30-50 times a day and says he has to get out of the "motel" and I need to bring him his car so he can pack up. He lost his driving privileges last summer, as well as his car, but he doesn't remember that. We took care in preparing the studio apartment at the retirement home with family photos and lots of memorabilia, as well as furnishings, to make him feel at home. The second morning he was there, he tried to leave a couple times and the staff called and asked me to come by and talk to him. I went right away and calmed him down.

My visit only helped for a brief period of an hour or two and his calls started up again. He's put a lot of pressure on the staff as well as me. I informed the staff I would be away this weekend, first time since my mom died, but to call if they needed me. I got a call from one of the nurses yesterday, while I was a state away, asking me to come visit with him or to send someone over to sit with him because he's so fixated on getting out of there. Is this normal? Isn't it their job to care for him and shouldn't they know how to handle situations like this? When I explained that I was 200 miles away and couldn't get there, the nurse said, "Well, we will do the best we can but you may have to hire a sitter." 

The retirement home had its nurse assess him before he moved in and his doctor also did an exam and sent them his medical records. My dad is good at coming off as pretty zipped up unless you're with him long enough to figure out he has severe short-term memory loss. So I think in their defense, they didn't see the reality of his situation first hand until he was a resident.

I don't know what to do to make this work but I do know that I can't bring him back home because I don't have the bandwidth to care for him and work as well. He clearly needs to be somewhere that he can get 24-hour care as he needs it.

The second issue, in addition to knowing how to get him to accept this and the staff there to take that on without asking me to come sit with him, is his phone calls. It's every 3-5 minutes all day long. Should we take his phone away? Is his ability to call me making it more difficult for him to make an effort to actually make some new friends and get involved with the other residents? The constant calling, even though I only pick up 2-3 times a day, is about to drive me insane. He has behaved the same way for the past year about losing his driving privileges - constantly asking where it is and telling me he has to get it back and telling me he did not lose his license. It's been a fixation that he still holds onto but now he's added getting out of the retirement community to his repertoire. He was prescribed Xanax but it never seemed to hep.

This is my stepdad. I always liked him but wasn't particularly close to him since he didn't marry my mom until I was in college.  I always assumed his sons would care for him if he was the last to go but they have been clear that they're not going to do that so I'm trying to do the best I can while maintaining some boundaries, which all but disappeared over the past year of caring for him. Thank you for sharing your wisdom. 

Quilting brings calm

It may not be the right  level of care for him.  I’m concerned that the staff doesn’t seem to understand the difficulties involved in the adjustment period for someone with dementia.   You refer to it as a retirement community ... with is often just an apartment complex  for people over 55.   You need at least an assisted living level. 

It takes a few weeks for adjustment even when you are at the right level of care 

star26

I went through this with my Dad, though the calls were not nearly as frequent as what you're experiencing. Maybe because he did not have his own phone and needed staff to call. When he called, I was able to briefly appease him by reassuring him that he was only there temporarily (which happened to be true, but I think it's still okay to say even if it's not), telling him of a major roadblock to his leaving right now (something that's out of both of our hands: the virus, a problem with the house, need doctor's approval first), and telling him that I was working on it. My general attitude was "I know, Dad. This is rough. There's a problem with XYZ that needs to be fixed before I can bring your car/pick you up, but I'm working on it. Can you hang in there just a little longer?" He wasn't happy, but he felt a bit better, and he would begrudgingly settle down and stick it out for a while (hours or a day). I repeated the same words with subsequent calls. Eventually, it stopped. He either forgot about it or started to like the place. He went through something similar while hospitalized, and in that case he did require a sitter.  

It's not at all unusual for your Step Dad to be having this reaction. But only time will tell if this particular facility and level of care is going to work for him. 6 days is nothing. When someone is new to a Memory Care facility and is calling family incessantly in order to leave, the staff and many members of this forum advocate blocking phone calls or taking away his phone. That is when the facility says "Don't worry, we can handle it". But if you're in a situation where the facility could ask him to leave because he's more than they are equipped to handle, I would try to work something out with the facility. Maybe take his phone, but accept calls that the staff places for him when they feel it's really necessary. Try different responses or tactics for calming him, while also looking at back up plans such as a sitter or a different facility. Maybe a discussion with the facility's social worker would be helpful? This can't be the first time they've dealt with this. 

Rescue mom

Along the same lines as star and quilting..you said he’s in a “retirement community,” which is a different than even assisted living or memory care and IME, not equipped or staffed to handle residents with cognitive problems. 

 Many retirement communities are glorious, like resorts, but they’re not meant for residents who need more help with cognition. (Sales staff may not be as specific about this as they should, or maybe they assume we all know all the differences involved, which, again, IME, i and many others did not).

 I’d  recommend at least start looking for another place that deals with cognitive issues, unless this one shows you they can handle him better and not have to call you for such things. Other types of facilities are staffed and set up to handle such issues themselves, without calling you every time.  If he does have a cognitive disease, he will not get better. Things only get worse, maybe quickly, maybe not, but at some point more assistance will almost certainly be a must.

But overall, and certainly in the meantime, ditto star and quilting. It often takes more than a week to adjust, especially when cognitive issues involved.

blylepinkard

Thanks for the thoughtful responses. For clarification it is literally named the "_ _ Retirement Community with Independent Living, Assisted Living and Memory Care Center." Sorry for the confusion. It is not one of the 55 and over retirement living communities, not even close.

He doesn't require help with bathing, grooming, takes no medications and is 100% ambulatory so they assessed him at the basic rate with no additional level of care. I know nothing about any of this and didn't question that assessment but did tell them I was moving him for the 24/7 oversight and social stimulation.

This place has several levels of care, the final being memory care.  That seems to be where the mistake was made - they thought he would take care of himself and instead, he is demanding a lot of attention and to go home every 5 minutes.

I'm scheduling a meeting with their team tomorrow to reassess the situation. Meantime 19 more calls from in the past 90 minutes.  From your comments, these seems pretty excessive, as well as disruptive for both of us and might be helped by taking his phone.

blylepinkard

Thank you for the advice.!I am trying the calls and calming him but in his case, the results don't last more than a few minutes and he calls me right back with the same question - when are you bringing my (nonexistent) car so I can pack up and go home. Maybe with time....

Also he dismantled the room within 12 hours, stacked photos and clothes and bathroom items up on tables and chairs because he was checking out. I put it all back in place, rehung pictures by the next morning, he had dismantled the room again. He is extremely strong willed and I don't see that changing. I predict he could fight this hour by hour until the day he dies. He was a Naval officer, very accomplished and is used to having his way in any and every situation. 

Quilting brings calm

You and the director will now probably need to reassess whether basic care is enough. If they have separate wings for higher needs, you may need to move him to a separate wing. Hopefully you can still afford it.  I’m still disappointed for you that the staff  couldn't figure out what to do and what was needed.   There should have  staff there 24/7 for the higher level needs that could have been called for assistance

harshedbuzz

A couple of thoughts-

1. A week is still very early days. It typically takes 6 weeks or longer to settle in.

2. If he's in a less supported setting than dementia trained memory, the fit probably isn't good. If other residents are not dealing with a cognitive shift, he may not be capable of participating in their social activities or may be shunned by more capable residents. 

3. Sometimes the fanciest CCRC in town invests more heavily in decor than in salaries to retain staff, maintaining enough help to engage residents or in training programs. Sometimes they places that's clean but a little shabby is better at care. 

4. A lot of people bridge the period where a PWD needs placement but not quite full-on memory care by hiring a companion to engage them and maybe even take them on outings. 

HB

blylepinkard

@harshedbuzz thank you. You make good points. It's only been 6 days. I've asked for a meeting tomorrow to follow through on all this. My friend's mother and father-in-law lived in this place for several years, her with Alzheimers and him with less severe dementia issues. They loved it and felt the needs of both parents were met. They actually lived there until they died. I am learning as I go but it seems the assessment was way off. Thankfully money isn't an issue and if we need to hire a companion until he digresses to the point he is ready for Memory Care, we can certainly do that. I just didn't have any idea that was something that might need to happen. This site and the people here are a great help.

BassetHoundAnn

blylepinkard wrote:

Thank you for the advice.!I am trying the calls and calming him but in his case, the results don't last more than a few minutes and he calls me right back with the same question - when are you bringing my (nonexistent) car so I can pack up and go home. Maybe with time....

Also he dismantled the room within 12 hours, stacked photos and clothes and bathroom items up on tables and chairs because he was checking out. I put it all back in place, rehung pictures by the next morning, he had dismantled the room again. He is extremely strong willed and I don't see that changing. I predict he could fight this hour by hour until the day he dies. He was a Naval officer, very accomplished and is used to having his way in any and every situation. 

You could have just described my mom! <haha> She took down all the photos in her room and packed them in her suitcase along with her pajamas and knicknacks. She was also calling me at least 25 times a day. I was warned that it would take her at least 2 months to settle in and this was accurate. I also got a lot of calls from the staff because she was running them ragged, confused about the phone, the TV, where she was, etc. She's now pretty good, and has calmed quite a bit, although she does keep insisting that she's planning to buy a car and "go home." But the first 2 months were emotionally hellish. I put a block on her calls (at the suggestion of others who've been through this), and would call her only once a day, or visit her once a day. Some family members similarly blocked her calls. But now she's pretty good. She claims she loves her new digs. She's aware that I'm not happy if she calls me 8 times in a day, although she can't remember how often she calls me. All her calls go to voice mail. 

I would just hold on for two months, see if he settles down. He probably will. Until then block his calls. Put your boundaries in place. You need to take care of yourself, your own life and your sanity. 

terei

You have received some good advice here.  I will comment on some practical matters.  If your StepD’s phone is programmed for pushing one button to call you, or anyone else, dismantle that. He will have to have a full number to dial + contact anyone.  If that does not work, either disable the phone completely or ‘disappear’ it + take it away so it ‘can  be repaired’ One phone call a day, FROM you is more than enough contact. He should not be able to contact you at will.

He should be brought by staff to every activity + meal that is available to keep him occupied + distracted.   Try to get the staff to enlist them in ‘helping’ with something there..organizing some magazines or books etc

He should be in a facility where he cannot just walk out. That may mean MC.    If he is agitated, talk to his Dr about trying other medications that may work to keep him more content. 

If he takes apart his room, that’s fine, it’s not hurting anyone

towhee

When my LO was in the hospital and I took her familiar photos and items (like you are supposed to do to prevent delirium) she put them all in her bag so she would not lose them.

When she first went into AL and I brought her own furniture for her room, she said she was not at home so why was her furniture there. Were I trying to make her crazy? Even years later in the nursing home I could not put familiar items from her home in her room. It just upset her.  I ended up using new decorations with colors she liked, and the only thing I kept were a few family photos placed on the side table and a picture album.

It is possible that taking some of the items from your LOs room back to his home might help him not to be so upset, especially if you are telling him his stay is only temporary.

BassetHoundAnn

towhee wrote:

When my LO was in the hospital and I took her familiar photos and items (like you are supposed to do to prevent delirium) she put them all in her bag so she would not lose them.

When she first went into AL and I brought her own furniture for her room, she said she was not at home so why was her furniture there. Were I trying to make her crazy? Even years later in the nursing home I could not put familiar items from her home in her room. It just upset her.  I ended up using new decorations with colors she liked, and the only thing I kept were a few family photos placed on the side table and a picture album.

It is possible that taking some of the items from your LOs room back to his home might help him not to be so upset, especially if you are telling him his stay is only temporary.

Those are wonderful observations. The reactions you describe are so similar to my mom's. I kept thinking that bringing familiar things from her home to her new residence, like furniture and pictures, would make her feel more comfortable, more at home. But maybe not? Some things she definitely appreciated, thanking me over and over for bringing them, but some things threw her into a tizzy. Why were they there? What was I doing to her? How did her furniture get to her new place? She keeps asking me these questions. Gosh, it's so hard. I'm going to think more carefully about bringing her things. Thank you for posting this.