Reassure me that I am doing the right thing

lilacgirl

My dad passed away in December and my mom has been living alone ever since, 2.5 hours away from closest family (me). She has what my brother and I believe to be stage 4 dementia based on the DBAT assessment. Last month her PCP only diagnosed her with "memory loss," she scored a 24/30 on the MMSE, but he did take away her driver's license on our recommendation. She has been functioning okay by herself, with me going back every 10 days or so, I think just because she is in such a familiar place and has neighbors who help her. But she has been getting very lonely at home alone, and finally agreed to move into a AL near me; move-in date is in 2 weeks.

I was there yesterday to try to figure out how much of her furniture is going to fit in the room. I sent her a video of her room, and she started to cry. She lives in the cutest house, and this is going to be a severe change. Also, she is only 84 and looks great for her age — she is going to feel very out of place among all the "old" people. She is getting cold feet, and I felt kind of sick thinking about it myself. She is already making a Plan B to move in with me (NO WAY do I want that) after 30 days.

One big reason I want to get her in here so soon is this place has a really good MC unit that is very hard to get into unless you are already in the community. Also, although she is still able to do her IADLs and ADLs, her confusion is getting worse and worse. She left a message for my brother the other day saying "this is your sister." She has had a couple of falls — one at my house. And she for a long time has had a real difficulty with dates, sequence of events, etc. So I know she needs help. I'm just worried that this is going to be a disaster. My mental health is in the toilet, too.

SusanB-dil

It sounds like you've addressed your own thoughts.

Yes, you are doing the right thing, since confusion is 'getting worse and worse', then there are the falls, and also making sure she takes meds correctly. Probably a myriad of other things that you won't have to worry about.

I understand that at the same time, it feels like you are displacing her from what she's known. Keep in mind this is no longer safe, and that is the biggest factor. What if she falls, or takes too much or too little meds.

It sounds like a win that it is a good MC center for when needed, too.

((hugs)) - you'll get through this

H1235

My brother insisted mom was perfectly capable of deciding what she would need when moving to Al. She was living with him at the time. He allowed her to pack everything and took her to the store and let her buy whatever she wanted. It was a nightmare! She bought king size sheets for her twin bed, packed cook books, clothes that didn’t fit, I counted 20 cardigan sweaters, yet she had no family pictures or special nicnacs. I would recommend you take the lead when deciding what goes. I didn’t even unload some things in from my car and a few things I managed to sneak back out to the car. Some things that were important were completely forgotten. Because she felt she was still capable of managing everything herself(she wanted to be in charge of the move), she didn’t want me to help her unpack or go through her things. She felt I was invading her privacy. I did what I could without making her too angry, but I never really had a good idea of what she had or needed. She ended up with a lot of nonsense in her room, but in the end it worked out. While she didn’t feel she belonged there, she did make friends and the activities and interactions with people her own age was great for her. It was also good that she had to get dressed for meals. At my brothers house she would spend all day in her pajamas. Just get her there and worry about the details over the next few weeks. When we moved my mil, someone drove her to al and they walked around and checked everything out. Someone else packed( or repacked what she had boxed up) and the guys loaded and hauled loads to Al. We helped her unpack, hang pictures and put things away. It worked very well. She actually commented that she was so happy everything fit in her new al apartment (of course it did not). I saw my doctor about anxiety medicine. It has helped a lot.

psg712

You are doing the right thing for your mom, 100%. Keep telling yourself that, because the transition from her own home to AL will be tough. Everyone adjusts differently, but I hope you will find (as I did) that after a while she will function better there. She'll have company, activities, and most importantly, help at any time she needs it. Plus she will be closer to you. Bottom line, she will be safer there than at home alone! Don't give up her spot in AL to move her to your home. Unless you can provide 24/7 supervision, you'll be starting over looking for placement as her dementia progresses.

Access to a good MC is an excellent reason to choose a facility. I did the same with my mom. In less than 2 years, she was MC- appropriate. It was the right choice for us and I hope for you and your mom also.

lisn2cats

Echoing everyone above - you're doing the best for your mom! I envy those who have an "easy" transition of moving their LO into AL, MC or anywhere outside of their home. My mom fought me constantly - I always knew she was feisty but she was next-level spicy in two languages!

When circumstances necessitated the move, I was nervous like a cat surrounded by rocking chairs. I was convinced that everything was going to go sideways. The AL staff assured me that after a few weeks and some TLC from the staff (and positive reinforcement from me and her friends), she would adjust. They were right. By the end of month 1, she was less argumentative about being there. Once she moved into her permanent room, I bought her new furniture as a gift, brought some stuff from home, and added a few "luxury" items (like extra plushy TP and tissues, fancy face potions), she brightened. Fast forward 9 months. She now owns her space and invites her friends to visit in her apartment (it's a room but I am not arguing with her!). She also (finally!) gets that the staff is there to give her 24/7 care and attention (sort of - again, not gonna argue). And she's made new friends (thank goodness).

There is brighter light at the end of the tunnel! I never ever ever ever thought I would have a normal life again. But now I know she is safe and taken care of, the staff communicate with me regularly, I visit her once a week (and no more complaints about being abandoned and neglected), and I no longer scream in my car everyday.

I think we all know in our heart of hearts that we are doing our best to take care of our LOs even if they say/think otherwise. I love that this community reminds - and reassures - us that 1) we are doing our best; 2) we are not alone; and 3) we have resources (wide range of experiences and knowledge).

I wish you well!

lmrennert

https://alzconnected.org/discussion/comment/269204#Comment_269204

https://alzconnected.org/discussion/75689/reassure-me-that-i-am-doing-the-right-thing

You are doing the right thing. We just placed our 90 yr. Old mom just over 1 week ago. I won't lie, it was difficult and she is more advanced than your mom. Her home was her "power station" we kept her there way too long. In the end we were forced to trick her for a car ride and lunch. She has no understanding to what has happened. So yes you are doing what is best. This is such a difficult disease. One day they have no memory, some days their long term is outstanding. Other days are filled with odd hallucinations. I pray for the best outcome for you!! It is 100% tge right decision.

lilacgirl

https://alzconnected.org/discussion/comment/269245#Comment_269245

Thank you for all of the replies. I think what I’m struggling with the most is thinking maybe I should have let her stay with me for awhile before moving her. But I have to remind myself— my house is not safe for her. She would need to use stairs every day, I have 2 crazy dogs underfoot, and last time she was here she couldn’t work the shower without my help (although she has used it many, many times over the last 25 years) and she fell by her bed in the middle of the night when she got disoriented. I need to keep reminding myself of this when she gives me a guilt trip. She gave me another one today and I just really internalize it when she does that. I need to learn not to let it get to me, but it is so hard.

harshedbuzz

@lilacgirl

You aren't doing this to her; you are doing this for her.

Your decision is the most loving under your circumstances. Safety is the most important aspect of her care plan right now. You would feel terrible if you allowed her to scald herself in your shower or fracture a hip tripping over your dogs.

I think a lot of us see out LO through rose-tinted lenses. FWIW, dad was in his early 80s when placed and complained mightily about all the old and crazy people there not recognizing his own condition.

While a MMSE of 24 is considered "mild cognitive impairment", I personally don't put much stock in those quick and dirty screenings. This is especially true for a PWD who is well educated and/or has a lot of cognitive reserve (higher IQ). I saw my dad obtain a 24 on MoCA (MoCA is more sensitive at detecting MCI than MMSE because it includes more domains) about 6 months before he died. Serial subtraction was his superpower. At this point he was unreliably continent, very confused and needed 24/7 supervision. After the appointment we walked back to the valet stand to get the car with dad bragging about being "off the charts" (his geri-psych was surprised how well he performed) the entire time. When I turned my back to hand in my dad toddled off and got in the passenger seat of some little old lady pulling in to drop off her car. Off the charts indeed.

At 84 and with the behaviors you describe, she is maybe appropriate for AL. It is not uncommon, in fact it's a sales tactic at some places, for a PWD to be accepted into AL and need to be moved to MC fairly quickly as they're unable to cope.

One caveat I would offer is to stop engaging her in the process of moving. It will only upset her.

HB

Shenmama99

https://alzconnected.org/discussion/comment/269253#Comment_269253

I moved my mom in my house in January and it was a huge mistake. I moved her into a group home one week ago. Yes she hates it and I feel horrible. My mental health is suffering (had first video therapy yesterday). But like I am being told it is the best thing for all. It will get better. This is the hardest thing I’ve ever experienced. The guilt is real. The depression is real. I wish I could say something to make u feel better. It’s really tough. Hang in there.

sandwichone123

Moving her is best, and doing so now is better than waiting. However, I suggest you do not bring up the move with her again until the day of—perhaps when you are already in the car or later. Discussing it has no benefit, only risk. She may feel younger than other residents, but after a few weeks she'll build relationships and come to see them as individuals rather than a white-haired mass. It takes time, but she may be happy there.

SiberianIris

You are absolutely doing the right thing by moving your mom to AL and being closer to you. It's great that it also has an excellent MC when the time comes that she'll need a higher level of care. Even people who don't have dementia get cold feet about moving. When she does, remain positive and tell her how nice it will be for you to have her close by. If she starts in about moving in with you, don't get into a discussion about it. Change the subject or say something non-committable such as "we'll have to see about that, but I'm not going to discuss it now".

You will be dodging a thousand possible bullets by having more eyes on her. Your life will improve by knowing this and no longer having to make those long drives, and wondering what you'll find when you get there. She will probably never tell you "thank you for moving me here" and she might complain incessantly, but that's a lot better than leaving her where she is and having something terrible happen to her, like a fall and not being able to call for help, setting her house on fire, letting a stranger in her house, etc.

My dementia journey was made so much easier due to the fact Mom already lived in a continuing care retirement community, where it was easier to add more support and supervision without her really being aware of it. She eventually needed 24/7 supervision, so we moved her to MC 7 months ago. She wasn't happy about it, but we told her the doctor wanted her to stay for a little while for intense physical therapy. Since she loved doing PT, this placated her. After a month in MC, I could see she was doing better physically and cognitively than she had with 3 shifts of private caregivers. She still complains sometimes to me, but she now has friends and takes part in most of the activities. The MC periodically sends me pictures, and seeing her safe and smiling tells me it was definitely the right decision.