This is my first posting. My mother age 84 has been diagnosed with mild MCI several years ago when she noticed she was forgetting things and losing track of where she was going while driving. In April of this year my four siblings and I decided it would be best to move her from her l bedroom apt on her rural property to her 3 bedroom house where she could have a room for a caregiver.

The first “therapeutic lie” was where we told her the tenants gave notice, when actually we had to ask them to move. She’s lived on this property for over 30 years and loves it dearly.

She’s had a 24 hour caretaker for the last 7 months and my two other “out of state” siblings fly to California to caretake on the weekends. Everyone works full time and/or raising kids. She is nearly at the end of her cash assets. When we moved her into her house, we had to tell her the second therapeutic lie. Because she was married to my dad who was in the service we told her the caregiver was a free service (my mom is divorced & was remarried once and so those services are not available to her)

My mom still has this idea she can lived without a caretaker and of course has forgotten she has already made several trips to the emergency room in the last 6 months. She is fiercely independent and feisty and her love for us has shined thru the years of raising five of us. But she has no more cash except the property she owns (her one bedroom is now rented out and is part of her income) and we will have to rent her house and probably sell the property soon.

My brother and his wife have offered to take care of her in their house in Oregon. He has invited her up for thanksgiving and feels strongly that she be told that she is being moved up there prior to her coming up. However, my youngest sister has contacted an agency that says it is best NOT to tell my mother.

Here’s my question: How do we break this kind of news to a person with cognitive problems? Do we speak to her primary care physician to get ideas? Tell her that we want family members to care for her now? Having five siblings to discuss and come to agreement about the care of an elder parent is challenging and extremely time consuming for us. I feel lucky my siblings can have conference calls and talk amiably but it is not easy. I feel incredibly sad about her decline but want to do the right thing.

Anyone have experience with similar transition times that can help us? Thanks so much for listening. What an amazing resource!

You'll get lots of good suggestions here.

1) If she's getting lost, doesn't remember ER trips, then she sounds impaired enough that I wouldn't tell her she's moving at all.

Your brother's probably thinking either 1) she "deserves to know the truth" or 2) she will have a fit if you don't tell her up front.

Neither is true. At this point, she doesn't know what to do with "the truth". Telling her about it will almost certainly cause problems.

On the second point, she'll probably never question the move itself.

I moved my mom hundreds of miles by simply saying "Let's go for a bit of a drive today."

2) When she gets to her brother's house, he should simply not bring up taking her home at all.

Wait until she mentions it.

Then say "I could really use your help here, Mom, if you could spare me a few more weeks."

And just keep saying that. Of course, the departure date never comes.

Always make it clear she is there as a favor to him, NOT because she can no longer safely live alone. You don't ever want to say that to her. Blaming it on the doctor won't be received well either.

3) Eventually she may talk a LOT about going home. That often happens even when people are still in the homes they lived in for many decades.

The general approach is to agree that going home would be great, and we will definitely go "next week, when I can get time off from work."

I moved my mother from her own little house next door to my brother in CA to a NH in Iowa exactly one year ago. My brother insisted we tell her what was happening which just upset her. She kept insisting that she was just fine in her little house and she did not need any help. Fortunately she did not remember any of the 4 day drive (even from one day to the next) and had forgotten her little house in about 2 weeks.

Knowing what I know now we should have simply told her she was coming for a visit and should not have told her she was moving permanently. The first few months she asked for her son and the story was that he was on vacation in NY. His wife is from there and they usually visit once a year so that made sense to her. I think the nurses in the NH still tell her that if she asks for her son.

She does not realize that she is in IA and that is okay. It is hard to lie to our parents but it really is a necessary part of this disease. She also asked about my father (died 25 years ago). The first times I tried to tell her he was dead but she got really angry at me and said she had dinner with him last night. Now I just say he will be back soon and that works.

You just have to go with what works and try to avoid upsets. You cannot reason with someone whose reasoner is broken. That is the most important thing I have learned from this site. You have to enter their reality because they cannot enter yours.

As far as thinking everything is fine and she doesn't need help - very, very common.

It's actually a condition called "anosognosia". Read more here:

http://alzonline.phhp.ufl.edu/...ding/Anosognosia.pdf

Also helpful, esp. for your brother:

http://www.alzheimercambridge....tia%20Experience.pdf

Even after we stopped telling her the move was permanent she was upset because her closet was full of her clothes. Also, she would not let me hang any pictures on the walls since she was not going to be there long.

It is rather funny that everytime I visit she thinks I have traveled from IA to CA and wants to know how long I am staying. I am getting lots of credit for visiting so often and from so far away. Of course she has no concept of time so she does not know if she sees me once a week or once a year. At least most of the time she knows I am her daughter or at least someone she recognizes.

My mom told us "I can deal with having to be here for a while (our house and then an ALF) as long as I have hope of going home someday .." So we don't take that hope from her. We go with the most appropriate theraputic lie at the time, which keeps her happy. Yesterday she was on a "I have to go home" theme and after explaining she hadn't been released by the doctor from her hip surgery we told her this doesn't mean you can never ever, ever go home again. At that she said "oh ok then." As long as she can keep the hope alive she does ok.
Marie

quote:

Originally posted by LittleRed:
My mom told us "I can deal with having to be here for a while (our house and then an ALF) as long as I have hope of going home someday...after explaining she hadn't been released by the doctor from her hip surgery we told her this doesn't mean you can never ever, ever go home again.

That's a great reply!

At my mom's dementia-care ALF, they had "memory boxes" outside the rooms that you could put pictures and other mementoes in.

It made my mom mad to see her stuff there (for reasons that would only make sense to someone with dementia). She couldn't get it out herself, because it was locked.

Thanks all for your helpful discussions regarding this topic. My mom doesn't wander (yet) and still is quite cognizant of where she is. I'm very torn over this because she will not be returning to her property, her "paradise" she calls it. My brother is determined to tell her, but it will be me or one of my sisters that flies her up to Oregon from California, so we will be dealing with her responses directly.

I thank you for your responses and will let my siblings know of this discussion.

I don't want to sound harsh, but just do it. I moved mom in and she has never once asked about her house that she lived in for over 30 years. The only house she evers talks about is the one in PA where she grew up. I had everything ready for her. We just needed to bring her dresser and night stand over, and of course her personnal belongings. I was lucky that my mom only lived 2 minutes from my house. She has never gone back. My son moved in to keep an eye on things until the market gets a little better.
Just wanted to let you know what worked for me and my mom. You have to do what works for you and your family. Good luck!

Grassflower, thanks for that piece of information. [It made my mom mad to see her stuff there] I'll file that one away for later on as I never would have thought about the memory box being an agitant, but I can certainly see where it might, and most especially if at that point she can't actually verbalize what's so upsetting. Thanks again.

I agree with those who have said that you'll need to make decisions for her, including moves.

I spent a lot of time with mom trying to convince her that it would be in her best interests to move, she'd get better care, etc. etc. We'd talk around in circles until I was blue in the face and, frustrated by "our" inability to make progress. It was my first, and probably best, experience in dealing with this disease. Because she was becoming a recluse and her nutrition was getting worse, the next time she "wandered" we moved her into an ALF. Bumf. My gentle lies evolved to meet the circumstances - "You need to stay here for a while until you get on your feet again," "The authorities say you can't move back to your apartment," "I need to check with the lawyers first" (this one worked surprisingly well!), and "I'll look into it and let you know when I visit next."

It is heartbreaking to have to take decisions for a parent who is mentally unable to do so themselves. And yes, they know how to push all the right buttons. But, at least in my case, we also see our LOs with AD and tend to minimize how bad it really is. I moved my mom months after I probably should have.

quote:

But, at least in my case, we also see our LOs with AD and tend to minimize how bad it really is.

Yes, it's true of almost everyone.

And Lindalulu's mom is probably a lot more confused by everyday life than the family realizes.

I too thought my mom knew where she was - but she sure didn't know how to use a stove anymore. Or a TV remote. Etc., etc. And then it became clear that she had no idea how to get to the town a couple of miles away - where she had lived for decades (not that she still drove herself, fortunately).

Her mom was apparently getting lost several years ago, so it's pretty unlikely that she's still truly tuned-in to where she is.

I told my dad he was coming to visit me in May when I moved him from St. Louis to an ALF near Boston where I live. He was very happy until he realized I would NOT be spending the night in his room and the first night was horrible for him. He's now in a NH and I didn't think he even knew he wasn't in STL until today when we called a friend back there and he told her the weather here was worse than there. I have to tell myself that his having a really clear day today doesn't mean that he could function in any other setting, though he said something to the friend about moving which made me feel bad for him. It's easier for me on days when he seems to have no idea where he is. He was so much like his old self today, it was hard for me to leave him there even though he's stopped walking and there's no way I could lift and move him (he's 6ft. 195 lbs.). Anyway, I've totally digressed from the topic which is that I would not tell your mom about the move. Just saying it's a visit is likely to work even if she later longs for home - nothing will prevent that.

Wow! Thanks everyone for sharing. Keep bringing on the direct experience so I can share with my siblings. This is incredible feedback that makes my heart so sad, so very sad as I scramble to make flight plans for November to go to CA for a visit and a trip up to OR.

I agree with Grassflower our LO's are often having many more problems than we are actually aware. My brother dealt with my mother daily and he really did not realize how bad things had gotten. I think most of us have a certain amount of denial.

Also, you and your siblings have to be prepared for her to decline with the move. People with dementia manage to function better in familiar places with familiar routines and moving them or changing the routines will often cause problems.

My brother was the one constant in my mother's world. She did not recognize her other three children that she did not see every day. But within 2 weeks after the move when I mentioned my brother she said she did not think she would recognize him since she had not seen him for so long. This really is a sad disease.

Hello all,
Just a quick question since I'm new to this online community. What is the meaning of LO? I assume that ALF is Alzheimer Facility, yes?

Thanks for posting your stories and extremely helpful insights. I think it will illuminate the path for a deeper understanding of my mom's disease.

Welcome to the message boards, lindalulu. As you have already seen, there are lots of people here who can help with their own actual experiences -- you can't find this stuff in a book!

LO is Loved One. Sorry, we develop a shorthand around here. You can find a useful guide to the most common abbreviations here. Scroll to the bottom.

Why not take a middle ground? Present it as visiting brother over the holidays (T'giving, Christmas, New Years ... on to Labor day if you must!) or for the winter? That way she knows she is not coming back immediately but hopefully will not be unduly upset. Tell her much the grandkids are looking forward to her "visit."

Lindalulu, one more thought. Try this out in your head (and have your brother do the same). "Mom, we're taking you from your 'paradise' and moving you to a place you know nothing about. You will never see your home again so take one last good look around." No matter how you phrase it, that's what you'd be tellling her. Would you really want to do that?
Marie

A friend of mine moved her mom to an ALF a couple of years ago. She didn't tell her in advance, on the advice of the staff.
I believe it was set up as a visit while the daughter was out of town. As time has passed, the mom has been told that her own home was damaged and is getting repaired.
The mom is being told that she's been at the ALF for about two weeks and will be able to return home in about two weeks.
I would tweak the above to fit my mom's personality and progression in the disease, but I wouldn't tell her it was permanent.
Just my two cents,
K

Welcome to the best support you have ever seen.

You have already had the pleasure of seeing that we have the most caring, sharing people around.

I am caregiver to my 80 year old Mother. She is in stage 6 now but was in 5 when I relocated from TX to live in her home with her in Dec. 08.

We took a trip in April and every home we went to became "her's". When we were at mine in Dallas she demanded the title to "her home". It was interesting. Mother does not think she is at home and has not for sometimes. This has been her home for over 10 years.

Thus the intervention of theraputic lies has given me and her some anger relief. There is no good reason to upset our LO because 9 time out of 10 they will not remember more than a breathe.

Sometimes I feel that she knows more but is unable to articulate it. I just plan to love her and care for her to the best of my ability for as long as she can be here.

Your brother will feel differently after your mother is there but to each their own method. Experience is a great teacher. I do wish I would learn some lessons without always doing it the hard way .

As you share this site with your siblings, ask that they come and visit. There is a huge source of caring, loving families of alz LO's and the many different ways that we all handle.

The chat room is a great, right this minute help in the evening. People come at the end of their day to vent, cry, laugh and just share with someone that is on the same road they are.
Sometimes there is a person in chatroom in day but not always.

Welcome once more and may you be blessed as you attempt to walk the thin line of reason in this move.

Sheryl

Tomorrow I'm going up to New York to move my father (late stage 6) from the apartment where he's lived for 50 years (and where I grew up) to a nursing home near me in the Washington, DC suburbs.

Instead of telling him he's moving, I've told him that he's coming down to visit for a while, and that he's going to stay with some people who work for me. Re: that - he's fascinated with my business. Actually I'm a solo consultant, but he's built it up in his mind to the point where he thinks I have hundreds of employees and deal in matters of great consequence (he doesn't know what, but they're important). And he's expressed a desire to work for me, so he'd have something useful to do. So I'm playing that card.

Beyond that - he's disoriented in space as well as time. He sometimes says, while living in New York, that he needs to go back to New York. He sometimes thinks I live in New Jersey (the last place he visited me) and although he was in Washington during the war, he can't hold onto the concept of what Washington is.

Then, last night, he talked by phone for an hour about how he doesn't have to move to New York and can spend the rest of his life right where he is. I think someone mentioned something to him about the move and that's how he interpreted it.

Bottom line - I'm trying to give him the story that (I hope) will cause the least upset and resistance. I'm dealing somewhat blind, of course, and I don't know how he's going to react. I'm guessing we'll go through a phase of resentment and a desire to go home - still with an unclear idea of where home is. With luck he'll begin to adjust to the nursing home setting and feel less distressed over time, but of course there are no guarantees of that.

Hope this is helpful.


Best,
Alan