Really dumb question about moving LO to MC

secondcor521

Hi all,

My Dad (88, Alz/vascular stage 5/6) is moving to MC tomorrow.

He's declined quite a bit in the last month. Facility called us last week encouraging MC, and we all agree he needs it. We visited places and chose his current facility. A few days ago in the flurry of things I made the call to move him tomorrow, which resulted in a rush of preparation, which resulted in me reading some quick articles about moving LOs to MCs, which led to me making a decision to suggest a fiblet of a water leak in his apartment so he can be moved "temporarily" to MC.

My BIL and sister are in town to help with the move. He's uncomfortable with fiblets, which I understand. But he did raise an interesting point - at some point we may need to come clean and say that he won't be coming back to his old apartment.

Is it better to (1) just rip the bandaid off and say, "Surprise, Dad, we moved you to MC!" Or (2) is it more likely he's so confused that he doesn't notice? Or (3) do we just keep fibleting our way into the future indefinitely? I prefer the second option but realize now (very late) that I don't have a choice. Maybe (3) is better than (1), but I'm second guessing myself.

Secondary question: Part of the issue is keeping everyone caught up with where he is now and what I'm learning and reading about how to handle things. How do I do that? I've been trying but I realize now it's somehow not enough. BILs and sisters do seem to see that as the local kid I see more what's going on with him, and they're absolutely great and supportive and helpful and everything.

harshedbuzz

@secondcor521

I will always defer to the judgement of the "local kid" who has boots on the ground.

Your BIL's concern isn't stupid, but it is clearly ignorant in the sense that he hasn't got the lived experience around Dad's dementia that you have. I totally would have thought the same thing when I first started helping my parents. You know him best because of your greater exposure to where dad is now.

It's about what's kindest. Dad probably has no awareness of his impairments given the likelihood of anosognosia, so ripping the Band-Aid, so to speak, would be doubly cruel. The water leak fiblet is a good one. In your shoes, I'd have a narrative in my back pocket in the unlikely event you need it. When dad asks in the future, you can add time consuming mold remediation to the scope of the water leak project and even a wait for inspections to get an occupancy permit.

We used a rehab stay as our excuse, because I expected dad, who had a difficult personality, to have a longer than average period of settling in. This allowed me to defer coming home based on something beyond my control. I worried needlessly, within a month he referred to MC as "home".

Wishing you a smooth move.

HB

Emily 123

Hi secondcor521,

I vote # 3

It's a very hard thing to get used to. Because you're around your dad you understand that fiblets can work. You see first hand the brain changes he's experienced that've left him very much in the 'now'. He physically can't form new memories, and so has lost the ability to recall that there's no water leak. It feels awful to tell a white lie over and over but, eyes on the prize, this is about soothing dad with a reason he can handle, not about honesty. The disease makes it so that honesty isn't always the best policy.

He may ask about moving back quite a lot because he won't be able to imprint new memories, and the environment and people will be unfamiliar to him for a long time (when my mom lived with me for 9 months she started every morning thinking she had come for a short visit). He'll need a lot of prompting and cueing by the staff to navigate this new home. BUT... your BIL should understand that constant questions are due to him trying to orient himself, not because he's been able to retain enough information to think the situation through and realize that 8 weeks have passed and the leak isn't fixed--he likely has no sense of the passage of time at this point, and so each time the fiblet is told it'll be new information.

Having been the primary caregiver, you understand that a big part of the move-in process is finding something your dad can go along with that gets him over to MC in a relatively calm state of mind. You may be suprised -- he may accept the move and settle in. We just moved Mom to MC last month and it went well--She had been quite ill with the flu and a UTI, so we got her there by telling her she needed IP rehab and she seems to be doing well. I'd say she was early stage 6 and her illness pushed her into exhibiting later stage 6 behaviors, which she seems to have bounced back from.

Since you have awesome family, why not let them handle keeping everyone in the loop? You'll have a lot on your plate--maybe they can send out quick emails or a group text. Updates don't have to be lengthy. We text pics a lot to family. When Mom was diagnosed I shared the following with family, which seemed to give everyone a better understanding.

Good luck with your move!

Understanding the Dementia Experience: 

https://www.smashwords.com/books/view/210580

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

Moderate stage changes: https://www.youtube.com/watch?v=6cZTgG6kDjs

secondcor521

Thanks both for the replies.

@harshedbuzz, I did not mean to say that BIL's concern was dumb. He's brilliant. I was meaning that I felt dumb asking such a basic question the day before the move - I should have thought this through better. I also should have told the MC place that I needed a bit more time to prepare for the move.

BIL very kindly and graciously and empathetically understands that I am the local kid. But I also want to take all input and I respect his opinion. I think that taking the input to heart from all involved can give our Dad the best possible result. (Which is why I ask stuff here too.)

@Emily 123 , I do see how fiblets are effective. Even with more fiblet experience, I still have a bit of a cringy reaction inside when I use them because it still feels uncomfortable to me. Doubly so asking others to participate in the ruse as with today.

On keeping everyone in the loop, I have a awesome small family who are dispersed across the country. So it's me trying to keep my sisters and BILs in the loop. The idea of using links and resources is a good one and will save me time, thank you!

Another thing for me is that of the three kids, I tend to be the most pessimistic / worrier. So my updates have been on the factual and conservative side and lack the overall "vibe" of what's going on. Also, Dad has had a more rapid decline in the last several weeks. So just naturally the updates have lagged reality since reality changes almost daily. On the good side, the sisters and one BIL visited last weekend and spent a good amount of time with him and we talked a lot, so everyone got caught up a lot more.

...

I'm now considering something much closer to the truth which also keeps family as the "good guys". We might try saying something like his doctor thinks this is a better environment for him - safer, easier, and more comfortable and we're going to have him there for a while. Thoughts?

forbarbara

There are no dumb questions when it comes to dementia! I agree with others - stick to your fiblet plan. I’m pretty sure that in a month or so it will be a non-question. When hospice helped me get MIL into MC, the social worker took me aside and said “you don’t have to be the truth teller anymore”. I balked at first but what a relief it was.

A lot of issues seem to come and go quickly for my MIL and I’ve learned to wait a few weeks before looking for “solutions”. Also MC staff seem to have a sense for which concerns should be addressed.

You are fortunate to have supportive family! The MC probably has an email list for general news and events - can you ask them to add your siblings? And maybe you can all agree on the level of sharing: need to know v. nice to know. For instance do they need to know every medication change or just the big ones? This is of course fluid and people’s level of concern may change as your father’s condition changes, but would help manage the expectations on you as chief communicator.

Hope your father has a smooth transition.

Emily 123

Well, every person is different because our brain's pathways are individual to us, as is how the disease progresses. As the 'local' caregiver you're the one with the most insight, and it's always helpful to come up with a plan that can encompass our needs as well--it really makes a difference.

The memory loss in the moderate stages and beyond can let you test drive a fiblet, and drop it if it seems to ramp up anxiety. I'd go with what you're most comfortable with, and see how it goes.

I tend to be pessimistic, too. But I think that can help when you're responsible for planning things--plan for the worst, hope for the best, and all that...🙂

harshedbuzz

@secondcor521 said:

I'm now considering something much closer to the truth which also keeps family as the "good guys". We might try saying something like his doctor thinks this is a better environment for him - safer, easier, and more comfortable and we're going to have him there for a while. Thoughts?

This is very close to what we chose to do. Since mom would be staying at home, the ruse around a leak or termites wasn't an option for us. The nice thing about "doctor's orders" (we called it a fancy private rehab) was that when he asked to go home or how long he'd be, we could say it was up to the doctor. This allowed us to explain we wanted best care possible (which made him feel loved) while letting some fictional physician take the responsibility for him being there.

There is no way I could have dropped dad off at a MCF and told him he'd not ever be leaving. That would be cruel.

HB

M1

Secondcor my bet (based on my experience) is that you won't need to "come clean" and he'll probably forget all about it in short order. My partner has absolutely no sense of time. We moved her from one MC facility to another about ten months ago, and she has no memory of the first place at all. After ten months, if she asks, we continue to say that she was moved here after a hospitalization for rehab and physical therapy, and she continues to go along with that. She has no memory of living with me on our farm. In fact most days when i leave after visiting I'll tell her that I'll call her when i get home (she doesn't have a phone) and that I'll see her bright and early in the morning (even if im not coming back the next day). All of this is fine with her.

Let us know how it goes.

TammyCA

My mom was roughly the same stage with VD when it was time to move her from AL to MC. I agonized over the decision. From taking away her independence to believing she would immediately see through any fiblit used for the ruse, it was one of the most stressful aspects of this journey. I worked with the team at her facility to use the water leak ruse. It was elaborate. Mom went to lunch in the AL dining room. From there, the in-house PT therapist took her for a long walk and PT evaluation under the guise of a new “workout program”. During this extended time, the movers came and moved her furniture and belongings to a new room in memory care. Staff told her the fiblet of a water leak and escorted her to her “temporary” room while reassuring her that they got all her belongings out without any water damage. While I remained in touch with staff, I stayed away for 2 weeks to give time for adjustment. By the time I visited my mom, one of the first things she said was how much she loved her new room and asked me if they thought the facility would let her stay there. I told her I thought that could be arranged…I don’t believe she ever realized that she was now in memory care. She was ready for the smaller environment and did much better with more focused memory care staffing than she had in AL.

harshedbuzz

@secondcor521

Just checking in. How did things go? How is everyone adjusting?

HB

mommyandme (m&m)

https://alzconnected.org/discussion/comment/200658#Comment_200658

That’s wonderful. Change is usually for the good.

secondcor521

Update:

We moved Dad to MC on Saturday. We did not use the water leak fiblet; we went with the "it's what your doctors and CCRC think is best for you."

We had the staff keep him busy elsewhere on campus while my sister, BIL, and I moved his stuff. We were thankful the move was only a few hundred yards; if we were moving him across town it would have taken 8 hours instead of three.

(On fiblets, if you're going to use one in this situation, I'd think it through and not change it at the last minute. I scrambled around Saturday AM making sure everyone got the switch from water leak to doctor's orders. It worked out fine.)

Initially Saturday afternoon he was agitated and wanted to leave. That lasted about 24 hours.

Sunday and today he seemed quite positive. He called to ask "Who arranged all this?" I thought he was wanting to know who to blame, so I somewhat cautiously replied "Your doctor and the CCRC, and I helped a little." He then said he was really liking it there and appreciated everyone helping him get moved over, and would I please thank them for him? Uh, sure thing, Dad.

There's clearly some adjusting to the new place that needs to go on, but he likes the new room, and he's no longer calling me 30 times a day asking what to do and how to get there and what to do next. The boredom and fear seem to be melting away.

I personally am cautiously thrilled, because I can finally relax a little. There are still tasks to take care of and he still calls a few times a day, but those conversations are much better. We were all concerned as a family about how he would react and we were second guessing all of our decisions, but honestly I think we got them all mostly right. We moved him to a good place, we moved him about the right time, we didn't tell him ahead of time, he didn't see his entire apartment being moved, and we essentially told him the truth about why.

I'm going over for a short visit Wednesday night. I think it's important for him to know he's still connected to us and not forgotten. It also helps that an exchange student from long ago and an old college roommate have visits planned in the next month or two.

Thanks for all the help and suggestions and ideas! It was really helpful to bounce things off people and consider different things.

ButterflyWings

#3.

Kick the can down the road. Rinse and repeat. Unless he is extremely oblivious, you might need to say what you're doing and what this place is, so I'd go with the fiblet from day 1 and let MC staff know the party line in advance as well.

There are no stupid questions here really, but I like what @harshedbuzz said about there being ignorant ones. BIL doesn't seem to realize that the nature of dementia is you would likely be "ripping the bandaid off" over and over, as your LO forgets. And that is downright cruel. Plus it leaves you to deal with the aftermath every time since you are local and they are not. (Meaning, in my world you don't have to tell them this, but they don't get a vote)

Edit: OK, I just caught up and you did go with a great reason kind of fiblet and kind of true. Good for you. Hoping this placement goes well in time.