The move to memory care(1)

GothicGremlin

Well, so here we are. I knew this day was going to come, but I had hoped it would come later rather than sooner.

About a week and a half ago we placed my sister in memory care. I was hoping we could keep her at home, but it was just not good for her, and hasn't been for awhile. For some reason (no UTI/blood work etc all good), her cognition took a nose dive near the beginning of summer and she never bounced back to baseline. I can see the deterioration day by day. It's been painful and frightening to watch. Pretty much everything stresses her out.

Her stress level at memory care has been much lower. It's been a big adjustment for her, and I've spent a lot of time helping to get her settled in, like talking to her on the phone every day, getting her room set up the way she likes, and visiting often. Staff felt that since she wasn't trying to leave or trying to go home, it was okay if I helped ease her in. Now we're at the place where she told me that she's glad she's there, and probably should have moved in a while ago. I wasn't expecting that.

I'm glad that she has that attitude, it's a good thing, but honestly I'm still a little queasy about the whole thing. I wasn't super comfortable placing her, even though I think it's what is best for her. I hope I'm right. I feel like I'm hovering (and I probably am). She's later stage 6, but still fairly verbal (although the aphasia makes things difficult). She's kind of on it with some things - like, she knows what kinds of clothing she should be wearing, but she has no idea how to put anything on. She still knows when she needs to use the bathroom, yet toilets and showers are mysterious things. She doesn't mind taking showers and doesn't fight it, but often thinks she's taken a shower when in reality she hasn't.

The facility is farther away from me than I like, but it's close to most of our other family, and it's close to her friends. She's incredibly lucky that she has friends who haven't disappeared - they actually come by to visit. My fingers are crossed that they stay that way for awhile.

I'm trying to roll with it all, but this summer/fall has been a roller coaster, and not the fun kind. I'm thinking of taking a gothic spa day soon (well, night, in my case). My "home" goth club has reopened and they require proof of vaccination and you have to wear a mask inside (masks have long been a gothic fashion accessory so the only difference is that now they'll be functional as well as fashionable), so I think my risk is fairly low. Dancing should help relieve some of my own stress, as I continue to process everything that's happened over the last three months.

M1

Bless you GG, it sounds like the move went really well. I'm sure you miss her, but even she is telling you that this was the right thing. You may have a harder time adjusting to the change than she does. Hope you have time to recoup. She is fortunate to have you in her corner.

GothicGremlin

Thank you, M1, your kind words mean a lot.

The last three months really have been a roller coaster, and it's all been so very painful.

I hope things continue to go well at memory care.

lalajean

my mom has had alzheimers for a very long time, maybe 15 years, the last 6 in a nursing home. this past week, my dad went into assisted living. i was living with him, and it seemed like the right time to get him more care than i can give. he was mixing up days and nights, wanted to go home even tho he was in his home, he would fall frequently, and wandered outside the home a few times. i know it was time for him but i didnt expect the deep guilt i feel. i feel like i threw him out of his home. in his right mind, he understands the move. and i've told him before that when i can no longer care for him, it will be time for a new plan. my sister does what she can, but she has cancer. my brother does the minimum and i work full time. he really checks off alot of the alz symptoms even tho he has been diagnosed with dementia. i guess i just need lots of validation that i did the right thing. thanks for listening.

lalajean

gg, my thoughts and prayers are with you and your sister. i know what you mean by, this day has finally come. i hope for a continuing good transition for your sis.

GothicGremlin

lalajean - You're exactly where I am -- "more care than I can give".  We all do our best, but sometimes our loved ones need more than what one person can give.  It sounds like that's the case for your dad, and it definitely was for my sister.

I've also felt a lot of guilt about placing her. I'm not exactly sure it's guilt though, it feels like guilt, but it could be something else. I know I did the right thing but I still feel horrible about it. Maybe it's just a deep sadness that I feel, and the sadness looks like guilt.

I hope that things go well for your dad in assisted living.

IDrive3

GothicGremlin - I'm sorry you are at this place with your sister.  But I'm glad she's doing as well as she is with the move.  In some ways, I'm right behind you.

I started looking for a facility "for the future" and while I was looking, I figured out that the future is here.  My sis is stressed all the time, too.  And she's unable to take part in activities that used to give her joy.  I don't know how to help her with that.  Besides all the hard emotions, I had a hard time finding a place that would even consider taking her - she'll be 60 in January.  There need to be more places for early onset people.  We're blessed to have friends who haven't disappeared on us, too.  2 of my sister's friends went on tours with me so I wouldn't have to go alone.  Another friend drove 3 hours round trip today to allow me to run some errands without dragging my sister along, and to spend time with her, of course.  I think I have a nice place for her.  The husband of a support group friend has lived there for over 2 years and she's happy with his care.  I'm fortunate to find a place that is between home and work and not far from Mom.  They might not have an opening for her yet, but at least we'll be a step closer.  2 staff people are coming to talk to us Tuesday, so I had to tell my sister yesterday.  She was upset, but very understanding.  I was actually relieved after telling her.  It's hard to keep secrets like that when you live with someone.  Today, I told my Mom.  She was also upset, but understanding.

I hope our move goes as well as your sister's.  Enjoy the dancing!

Shevie

What a loving daughter you are. They are so lucky to have you. Hope your sister recovers too

GothicGremlin

IDrive3 - yeah, that's kind of how it was on my end too - "the future is here".  Everything that you describe with your sister has been similar to what my sister has been going through.  One of the saddest things is that my sister was always a singer (sang professionally all through her 20s), and now she can't do that anymore.  Not being able to sing has been just horrible for her.

The simpler environment and structure at memory care has been really good for her though. And she's told me multiple times that people are really good to her there (I'm so relieved).

We've found the same problem with regard to memory care - age. My sister just turned 62, and she's the youngest person there, so that's a little weird for her. I don't know how to fix that, and you're right, we need more places that care for those with early onset. Having people her own age would go such a long way for her.

Goth club/spa night is tonight!  Thank you for the good wishes. 

IDrive3

My sister was an artist - not professionally, but for fun.  Now, her hands won't do what she wants and she ends up with a painting she doesn't like, and then she doesn't want to paint again.  She was also a birder for fun, and can no longer identify birds - even crows and sparrows.  She's been a self-proclaimed "bird nerd" all her life, so I expected the birds to stay longer.

I had to tell her about the MC all over again today because 2 people came to talk to us this morning.  I know most people would tell me not to tell her, but she is still aware of her disease and the progression.  And she can read my face better than she can read a book right now.  We've lived together since we moved out of parents' house, so we know each other very well and will both have a hard time adjusting to being apart.  It just stinks.

GothicGremlin

 IDrive3 -- Yeah, it stinks.

That whole question is difficult - do I tell her about memory care? Just take her there? I opted to tell my sister before moving her. She's late stage 6 but she still knows what's going on around her (more or less), where she lives, who her family and friends are, etc. Although --- she said to me the other day that she likes her room at memory care and that she's lived there for years.  So, not totally "on it". 

I had obliquely brought up moving to memory care a few other times so it wasn't the first time we discussed memory care. She is also aware of her disease and the progression.  She said to me recently, "my Alzheimer's is getting worse, isn't it?"  Kill me now.

It's all painful, but at least she seems to be calmer.  I think memory care was the right call.  I hope when your sister moves to memory care that it all goes well.

IDrive3

Thanks, GothicGremlin.  I hope it goes well, too!  Your comments about your sister are giving me hope!

After we talked about it, my sister wanted to see the place.  I wasn't sure about that, but did it.  I'm glad I did.  She mostly saw the model room and the dining room, but I think she felt comfortable and she made positive comments afterward.  I'm hanging onto that memory everyday, when we talk about it all over again.  Some days she's okay with it.  Some days she doesn't remember why, just knows she's upset about something.  Some days she asks me if she did something wrong and that's why she has to move.  Yesterday she wanted to move to her friend's house!  

My sis has several comments that break my heart: "I never wanted to have Alzheimer's."  "I didn't want it to be like this."  etc., etc.

GothicGremlin

I know what you mean, IDrive3 -- comments like "I never wanted to have Alzheimer's" are incredibly painful.

Before my sister saw the memory care facility, she was convinced having to live there was a punishment for something she did that was bad, or wrong.  Over and over and over I did my best to convince her that she did nothing wrong, she's the same sweet person she always was. I was honest and told her it was because she needed more care.  She's with it enough to know that she does needs more care.  And thankfully, our relationship is strong, and she trusts me to do the right things for her.  And yes, this does cause a lot of stress for me, which is why I have a therapist. 

I'll add that I never talk about anything important when it looks like she's in a brain fog. There are times where she's so confused about pretty much everything, I just wait for it to pass. One time she told me she sometimes doesn't know what to do or how to do it. I think she was talking about feeding her cat and cleaning the cat box.

She was also concerned that no one would come to see her and that she would be alone.  I made sure that didn't happen!  So in my case, I think being able to reassure her that her worst fears were never going to happen were key in getting her to accept memory care. That, and following through. I talk to her on the phone every day, and her friends and I make sure someone goes to see her every other day.

It's not been smooth sailing all the way, I won't lie, but I'd say that at this point she has accepted memory care, and sees that it isn't the hellish place she thought it would be. A bonus is that staff there are attentive to her - probably because she really does have a warm disposition and people generally want to be nice to her.  She's told me on several occasions that all of the staff there are really nice to her.

There is good reason to be hopeful!

IDrive3

I spent much of yesterday and today reassuring my sister that 1) she didn't do anything wrong, 2) her friends and I would be able to visit, 3) no one was going to make her change religion, 4) no one was going to make her be a nun.  I explain that I'm worn out.  That we're both doing our best, but taking care of the 2 of us and Mom is more than the 2 of us can do.  That makes sense.  For 30 seconds.  My sister has a good disposition, too, and is well liked.  But she thinks she'll have to work hard to do her best, and she'll have to be careful what she says.  I keep telling her that she's been "doing her best" as long as I've known her!

I used to have a therapist.  The last time I talked to her, while sis was napping in another part of the house, sis got up and when she couldn't find me or the multiple notes I left her, she went looking for me outside.  Luckily, she came back in the house when she didn't see me in the yard, but she was terrified when I came downstairs.  We had a similar incident today when I tried to finish up the yardwork after she went in the house.  When I started seriously thinking about MC, I was thinking maybe we should wait until after her January birthday.  I'm reconsidering that, but there's not an open room right now, though they expect one soon.  At least tomorrow, I get to go to work for a while and relax!  

My2moms

YYou definitely did the right thing for both of you. I'm going through this now w my mom whom I lived with and took care of for a long time.  I think since we're in Iowa, the winter will be horrible for us both. They need more than I can give anymore. 

I am hopeful that this decision is right too, im also pretty optimistic that it is. 

GL

abc123

Dear GG, you are really a good sister! I’m glad she is liking it at MC. 

How did your goth spa day go? I hope it was everything you needed it to be! 

Happy Thanksgiving to you and your sister!

Iris L.

GG, I posted on your thread about pre-Alzheimer's resources.

Iris

GothicGremlin

My spa day (well, spa night) was great, abc123, thank you.  I got to dress up and dance - something I haven't done in so very long.  It felt so good.

Thank you, Iris. I just posted there as well.  I would have posted earlier but I got my covid booster shot the other day and it knocked me out. I'm fine now. 

Happy Thanksgiving!

M1

Btw GG, love the picture. Happy thanksgiving to you too.