Hate being locked up in Memory Care

This sounds rough for you. Is another placement an option? I hope you are able to find some solutions that work.

My Mom didn't like the memory unit when I moved her in a year ago. The main reason for moving from assisted living to memory care was due to her wandering and leaving facility. It hurt my heart at first because she was more aware than most at times. Lewy Body has so many fluctuations and everyone is different. Her dementia was the first sign.

I just reminded myself that she needed to be where she was at and that I was doing the best for her I could.

I'm sure you are doing your best for your husband.

This is it. We bought into this CCRC knowing he would need Memory Care. Unfortunately he moved in before ever enjoying the new apartment. But I am able to take him out and around the independent living areas and activities but he can only handle so much before he gets disoriented and agitated. We went to a sock hop last week and he and I danced and even did a solo and everyone loved it. That part of his brain was still able to do the moves.
He has only been there 2 months so I’m hoping he will get used to it and we will find more activities that suit him.
I know I’ve done the right thing - it’s just forgiving myself and letting go of the grief when leaving.

@maryvc
My husband, 79 years old this month, is in a similar situation. He was diagnosed in January with severe Alzheimer’s and had been diagnosed earlier with NPH (normal pressure hydrocephalus). His father had Alzheimer’s so there was family history. He had also been falling frequently and began having seizures in January. There is no warning before the seizures.

He entered Memory Care in April of this year and has been complaining of boredom. He wants to go play golf, but his conditions with seizures, balance and falls won’t allow that. He wants to travel and go to faraway places but I am not willing to take the chance of his having a seizure while I’m driving or we’re on a train. I know he’s disappointed but like you, I feel he’s where he needs to be. He doesn’t engage in activities there, saying they are boring. We are meeting with his care team next week to explore a life enrichment program which sounds promising. I bring him books I think he’ll enjoy and he has a tablet computer he can watch programs on and access email and the internet. He can hold a conversation to some extent but has lost some abilities related to complex thinking skills.
I wish there was more I could do for him but the reality is I can’t.

@ortina2023
Hi, I've seen many virtual sports games folks can do in front of their T.V. , like Wii golf for example.
Not the same as golfing outdoors, but help him keep his skills up.

@ortina2023 I wish they were in the same memory care. Maybe they could talk to each other.
He is bored and gets agitated.
Yesterday he was aggressive with a nurse aide and they increased his meds. He has been in MC 2 months and still working on a balance of meds and life that works for him.
My husband does not read anymore and can’t use an iPad or any devices. He gets very confused. But he can still hold a conversation. He does enjoy watching sports and engages in musical programs.
We are also having a care conference next week.
What is the life enrichment program?
Thank you for sharing ❤️

They do sound similar. My husband has limited success with remotes and his devices and I often need to help him navigate how to use them. I’ve made it as easy for him as I can so he can find the websites (YouTube is a favorite) he likes. I need to help him reboot his phone and reset his computer password sometimes but for now he’s managing okay.
I’m not sure yet what a “life enrichment program” entails. I’ll check back here after the meeting next week and let you know. I believe it will include supervised interaction with residents in the assisted living side of the facility (higher cognition) and some outings with them with a nurse along in case he has a seizure, but again, I don’t know for sure yet.

@maryvc
Your dilemma sounds like something I will be facing.

My 75 year old husband has LBD. We are still living at home, but everything—everything—is becoming more difficult. There is no local care help in our small western town. We face a move in the next year or two, though that timeline could change tomorrow with LBD.

We have visited several CCRCs and have put deposits on one near our daughter in another state. When we began to look at CCRCs, we expected to move into independent living together, with memory care available when needed. Now, I question whether my husband will be allowed to live in independent living when we are ready to make the move, because this CCRC requires cognitive testing.

So, I am now reluctantly facing the prospect of assisted living in this CCRC in order to live with my husband before he is ready for memory care. To be honest, the idea of living in a smaller assisted living apartment makes me want to scream. But he is not yet ready for memory care.

Is this something you have faced? Is assisted living with your husband possible, as a sort of middle ground, temporary place until he is more suited to memory care?

I would much rather live in independent living. I asked someone at the CCRC whether we could remain in independent living together if one of us fails the cognitive test, and he said, normally, no. I have found other CCRCs that do not require cognitive testing where this is not an issue, but the locations are not ideal. My husband has long term care insurance that would pretty much cover three years in memory care, but when that is gone, I would face paying two CCRC rents, which would be exorbitant.

How did you determine your husband was ready for memory care, as opposed to assisted living? Did your CCRC make that determination based on testing? Is your CCRC non-profit? The for-profit CCRCs I have looked into do not require cognitive testing, and I wonder if that is a typical difference between non-profit and for-profit CCRCs.

I HOPE the staff at you are working with can customize your husband’s care. It must be so difficult for both of you! Take care.

.

@maryvc
Games he can do
Listening to music
Going for walk
Talk in a group so he is not alone

When my husband was in memory care for a time. I hired a companion to go be with him to provide one-to-one activity and conversations. Of course that is another expense.

I have not looked into them as we are beyond this now, but I would recommend looking at some of the new AI products that are aimed at seniors and people with dementia. There is no one product that can deal with all stages, etc., but some seem promising . These are links to the websites of a couple of them .
https://www.wsj.com/health/wellness/for-dementia-patients-ai-can-be-good-listener-8e02b174
https://elliq.com

@nelms My husband and I knew we needed another living arrangement for the future. When care became more 24/7 for me, my energy healer said "What are you going to do if something happens to you?" My two children in town both work full time and I am everything in this relationship. I handle all decision making etc. finances, home management, and because I am a nurse, feel like I am also a care coordinator.
After that we toured two CCRCs in town that also had Memory Care. The idea would be that we would move into independent living together and eventually he would move to Memory Care. Or if I had a stroke ( I have been to ER three times - twice stress related and one emergency appendectomy (the day he and I were leaving for a Viking Cruise) We put a deposit on both because the waiting lists were long. The one we wanted most had a 5-7 year waiting list for the apartment we wanted. But then they introduced us to their newest development which are independent living apartments a half mile away from the main campus, where they have Ind Living apartments, Assisted Living, Memory Care and Skilled Care and Rehab. We were able to choose the decor etc and waited 2 years for these to be complete. I move into Ind Living in August. His Alz/Lewy Body Dementia progressed faster than our timeline so I will be moving in alone. I live alone now for the first time and drive 20 minutes to see him almost daily. My kids visit at least once a week.
This is an expensive option but my husband bought long term care insurance years ago that will cover the Memory Care.
I consider myself a semi widow as my husband lives but he is not the same, although our love story continues. We have been married 52 years. He is 79 innn June and I was 74 in May. This is very sad, but because we are both part of the same community (and I am considered a resident even though I am not there yet) I am able to take him to some of the Independent Living activities and I can take him out to dinner etc. I don't think I will be able to bring him to the apartment. He gets very agitated when we return and I have been advised that it would not be helpful for him or me. Another sadness -to be moving in without him. However I am very active and youthful with lots of friends inside and outside our community. I hope to travel again and I enjoy my grandchildren's activities. I am continuing to live a life even though it is filled with worry, sadness, fear, guilt, and the full time job of being is biggest advocate-much needed.
We have a team care conference this week. This is so important as he has been there two months now and we need to determine who is the quarterback for his medications, how activities can be more enriching, and the best way to handle visits. I am also very disgruntled about finding him unshowered and in his pajamas during the day because he refused to let the aide do his morning care. Many have been untrained for skilled memory care and often are agency he has never seen before so he does get agitated and fights them if they push too hard. He is a huge challenge for the staff. Those who are well trained and experienced in dementia care and redirecting, and descalating, are great with him. I could not handle him any more myself and I wanted us to enjoy a life and have him be in a place where he can have socialization, all the therapies, a fitness center with a trainer and more. He enjoys all the exercise and also loves his speech therapist. All services are offered there.
The other residents are complacent and participate in whatever activity is offered. My husband hates arts and crafts, watching Elvis movies and there is little conversation that makes sense to him. There are 10 women and 2 men and the men do not converse. Meals are quiet.
I got no sleep for three years and as his disease progressed especially in 2025, he began to threaten me and was pretty delusional in the middle of the night.
I took him to day care almost a year before he was admitted. He loved it -three days a week and had his best buddies there. (Now they are all moving in the same direction) . But then as he progressed, he was not enjoying it as much and was disruptive with the group. Bathroom issues became more difficult.
I also had a caregiver once a week during the day. My next step was to find night time caregivers so I could sleep. I interviewed a few and none would work from 9-9 which would allow us to enjoy our evening, could help him shower and then wake up with him in the morning and help with care. They all wanted 7-7 or 6-6.
I also hated the idea of someone in the house all night. I still would not get sleep and would will want to be with him if he got up confused, delusional or even violent.
Then a room opened up in the MC unit. It is a large room with a large private bathroom and shower. I took it and decorated it in a way that is peaceful and a haven for him. He does love his room. They call them apartments but it is really like a large studio without a kitchen.
And I will be close in August.
For his birthday this month I sent out a massive email and asked friends and family to mail him a birthday card with their photo attached.
We will celebrate together. In time, I hope we can come up with a plan that suits him, but the truth is, this is progressing faster than we thought and I take one moment at a time; put one foot in front of the other; and enjoy a hug and a kiss.
It's hard. When I leave I can't even say goodbye. It is a difficult transition.
I am sorry for all of us. I am grateful I was able to make this plan. And my goal is to be a collaborator and not a complainer with the staff so that this will work for all of us, but mostly for him. I know I can't expect happiness but maybe just some peace of mind:)