Changing Assisted Living Communities - VENT

OnlyDaughter123

Hi everyone. I'm new here and I am in the process of exploring the different discussions posted. I appreciate all of the information everyone has shared. It helps me to feel like we are in this together. I wanted to get some things off my chest and I didn't know where else to go.

I am an only daughter and I care for my mother who was diagnosed with Alzheimer's and Vascular Dementia about 2 years ago. The last 2 years have been incredibly difficult as I had to organize everything around my mother's finances, care and step into the new role of making decisions for her.

My mother has lived a difficult life but through it all she maintained beauty, intelligence and grace. Some of her challenges, like losing her parents when she was young have brought strain over the years to our relationship and I feel like it's exacerbated now that she is losing her memory and cognitive abilities.

I entered her into one assisted living a year ago and recently switched her to a different closer to me which focuses on memory care exclusively. I thought this was the right thing to do as the relative that lived near her at the previous place moved away. I spent weeks getting her suite at the assisted living ready, attending to every detail I could think of. Now she has moved and I feel like everything I did was in vain. The former assisted living wasn't perfect but she seemed somewhat stable there, into a routine. Now that she has moved, she seems extra disoriented, hard to follow in conversation and she is having difficulty with hygiene/continence that I didn't observe previously. I feel like nothing is working and like I made a mistake.

The nurses and staff at the assisted living have been communicating with me and they have told me my mother walks around at night. She isn't sleeping properly and seems very agitated, especially at night. She had a body odor last time I went to visit, something very uncharacteristic of her, yet she refuses to allow staff to help her. She also doesn't allow me to help her. I'm at a loss of what to do. I'm questioning if I should have kept her in the previous assisted living facility where at least she didn't have to deal with so many changes.

Not only am I taking care of my mother, but I am also a wife and mother to a young child, and I have my own business. I feel completely sandwiched in my responsibilities. My husband is very supportive but it's hard being the only biological child. I have an intense feeling of aloneness. The person who raised me is slipping away and there's nothing I can do about it.

I feel like everything I do is wrong. No matter what I try, my mother doesn't like it, doesn't do well and I feel like it's my fault. I haven't been sleeping well at night thinking about my mother not taking care of herself. It's truly devastating. I feel like she doesn't deserve to spend her retirement years this way, after working hard her entire life. I feel it's not fair! Has anyone gone through anything similar to this? Do you have any suggestions for how to help my mother better adapt to her new environment? To help promote hygiene in someone who is in complete denial that they have any loss of function? And how to keep my own sanity in the process?

Jgirl57

I haven’t been through that yet , but I am awake reading posts and wanted to tell you to go easy on yourself. It sounds like the disease is progressing but try not to second guess yourself . You are doing the best you can and I am so sorry you are feeling so distraught now . Hang in there .

Jgirl57

P.S. Glad you posted here, that alone may help you feel better. Welcome

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OnlyDaughter123

https://alzconnected.org/discussion/comment/184567#Comment_184567

Thank you so much for your support. It’s so hard to feel like what I’m doing is enough so this is a really helpful reminder. ❤️

OnlyDaughter123

https://alzconnected.org/discussion/comment/184574#Comment_184574

Thank you for your help! She is now in a dedicated memory care community. They have her on a low dose of Seroquel at night for sleep but I think you are right. Some revisions may need to be made to her medications or doses. Thank you for your tips on hygiene. I’m going to give the “spa approach” a try. :) It’s hard to draw boundaries around what I’m capable of vs not. It’s been hard to accept that some of the issues my mother is facing are beyond my control. I appreciate the much-needed reminder. 🫶

harshedbuzz

@OnlyDaughter123

Hello and welcome. I am sorry for your reason to be here, but pleased you found this place.

To my ear it sounds as if you are doing all the right things-- especially moving her from a hospitality-model AL to a MCF near you where you can have eyes-on. Your mom is fortunate to have a thoughtful and capable daughter as her advocate.

The timing of the move was likely fortuitous even if it doesn't feel that way to you. The pattern of vascular dementia progression tends to be a series of steps and plateaus versus the steady decline she experiences as a consequence of the Alzheimer's. Mom's loss of her ADLs around bathing and potentially toileting are most likely the result of disease progression rather than you moving her as she's not returning to a baseline. Care should always be appropriate to her needs on her worst day.

If it's early days in the MCF, I would speak to the DON about their plan to deal with her hygiene issues. Most good MCFs will allow a PWD to settle in and bond with their caregivers before inserting themselves into more intimate forms of hands-on care. At dad's MCF, they gave him around 2 weeks of building relationships with him which frustrated my mom who was crushed by the love of her life looking like a food-encrusted yeti. The first time they tried a shower, they had mom there to reassure and help him. They did the second time as well although she wasn't as hands-on that time. After that, they took care of it.

I agree that medication would be a good idea. Dad's MCF had a geri-psych affiliated-- maybe mom's does, too. Sometimes refusal with care is driven by anxiety which can generally be treated successfully without sedation although sometimes a nighttime medication is used to help a PWD fall and stay asleep.

HB

GothicGremlin

Hi @OnlyDaughter123 -

Welcome!

I agree with the others, but want to add that it does take time to acclimate to memory care. When I first placed my sister there, it was very traumatic for her. She thought she was being punished, and kept promising to be good. Needless to say I felt horrible. But I also knew that I was doing the right thing.

It took about a month for her to fully acclimate. Once that happened she was fine. She even told me that she probably should have moved there sooner.

It'll get better.

HollyBerry

Sending virtual hugs. We moved my mom from an Assisted Living where she was comfortable, there was consistent, long-term staff who loved her, and where she expected to spend the rest of her life, to be closer to me halfway across the country. It was rough in the beginning. I felt horrible because one of the things she really enjoyed was looking out her window and watching people walk, bike, skate past, watching the birds, etc and her new room looked out on other buildings. In the end I think she was very happy that she moved closer to me, but not as happy with the facility, though the first place wasn't able to meet her needs any longer.

Re bathing - lots of information in other threads. One thing that worked for us: there was a hair salon in the building and she decided she liked the woman who did her hair there (thank goodness). I signed her up for a weekly wash and set, and they scheduled her shower assistance for the night before her hair appointment, so both things got done on a schedule (sort of...). She didn't like the assistance part but they built it into her night routine and that seemed to help. She was generally pretty cooperative and knowing that "everyone gets help at bedtime, just in case they need someone there, it's a service we provide" was somehow more acceptable to her than "YOU get help at bedtime because YOU need it."

Re wandering at night - my mom did that, too. We wondered how much it had to do with being off her normal schedule - she was a night owl and an early riser, both. They sent everyone back to their rooms fairly early and did the bedtime assistance pretty early, so she'd fall asleep then be awake in a few hours, thinking it was morning. Eventually they gave her some melatonin and that helped for a while. She would also get up to use the bathroom and then go wandering around the "household," looking for someone to talk to. If she didn't find anyone, she'd call me at 3am.

My brother and I had to learn how to work with the AL staff. You are the expert on your mom as a person and they are the experts on working with people with dementia. You have to figure out how to work together, figure out where they can do things you can't, and where you get to be her daughter again and they get to be her caregivers. There was a great nursing supervisor who said to me, essentially, "honey, I"ve been working here for 10 years, I've seen a lot of women just like your mother and we know how to handle this." And they did.

Build "mom time" into your schedule and find a way to enjoy it. Starbucks and chocolate go a long ways!

OnlyDaughter123

https://alzconnected.org/discussion/comment/184582#Comment_184582

Thank you for your reply and for sharing more about your situation. It helps me to learn about what others are going through and their tips and tricks. I can't thank you enough.

OnlyDaughter123

https://alzconnected.org/discussion/comment/184706#Comment_184706

I'll try and be more patient and let her settle in. I know it can take time. Thank you. 🙏

OnlyDaughter123

https://alzconnected.org/discussion/comment/184761#Comment_184761

Thank you so much. This is great insight. It's similar for us. My mom was far and we moved her closer, but I liked some things about the other assisted living better. Some things in the new place are nice as well. I'm working my way through the discussions and will check out more on bathing/hygiene. I'm definitely figuring out "how to be a daughter again" as you stated so well. That role really got lost in the whole process of handling the medical and financial aspects around her diagnosis. I'm hopeful I can get at least a little bit of that back.

HollyBerry

My favorite "how to be a daughter" things usually involved asking for her help with something -- a recipe, mending something, things she absolutely knew more about than I did. It didn't matter if it was real or contrived and it didn't matter what her actual answer was. One day she mentioned that one of the other ladies was knitting, and I asked if she'd help me re-learn how to knit - she had taught me as a child and I never really cared for it, but I was just bad/good enough that she could watch and help me fix my many mistakes. I tried to come to activities at her AL whenever I could; they welcomed family members and we had fun doing art or listening to music together.

The other "how to be a daughter" advice - I laid it on pretty thick that she took care of us for all those years and now it was my turn to help her; "you earned the chance to have people help YOU for a change;" "you were smart enough to save your money wisely and now you can afford this" (well, sort of). Can't find something? "It's in the storage unit."

SEM_BOS

Hi onlydaughter. Only son here going through a similar pattern. We've had to move mom to a rehab and then to a new MC. At all 3 of those places (MC1, Rehab, MC2) it took 1-2 months for her to settle into a rhythm. In the mean-time, her blood pressure was whacky, she was extra confused and angry, depressed, sleep patterns messed up and more that I'm probably forgetting. She eventually adjusted, but not quickly. Each time, we thought her health was really declining, only to see her bounce back (somewhat) after she settled in. I think you're doing everything as well as anyone can do. Good luck and please try not to beat yourself up.

OnlyDaughter123

https://alzconnected.org/discussion/comment/185332#Comment_185332

Thank you very much for sharing these tips. It’s incredible how responsive our loved ones become when we ask for help. I’ve been educating myself and incorporating this technique into my visits. It really helps! One day it was folding socks, and me reminding her how much better she is at it than me. Another day it was working on a puzzle and me reminding her how neat and beautiful her penmanship is.

OnlyDaughter123

https://alzconnected.org/discussion/comment/185398#Comment_185398

Thank you for sharing your experience. It’s not easy and I’ve been feeling a lot of stress and guilt around whether or not I’m doing the right thing and doing “enough.” I found a good Geriatric Care Manager who helped me out a lot with the situation. I ultimately realized I needed to move my mom to another AL MCF that’s a much better fit. No place is 100% perfect but this one is faith-based and has a highly structured program that suits my mom. Wishing you and your mom the best.