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Leaving memory care

Posted by saraemma3709 @saraemma3709, Aug 18, 2025

Unfortunately, My husband is in memory care as he is wheelchair bound and thus I am unable to to take care of him at home. When I visit him and stay two hours plus, he gets very upset as he doesn't understand that I cannot stay. I try to say, I have a doctor's appointment or I need to go to the store. It makes me so sad when I leave him so upset.

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maryvc | @maryvc | 2 days ago
In reply to @turtle4115 "Mary, I moved my husband to assisted living over two years ago and then to skilled..." + (show)
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Mary, I moved my husband to assisted living over two years ago and then to skilled care a little over a year ago. We've been married 54 years this year and I always had him with me until that first move. He has Lewy Body Dementia and his physical needs are much worse than his need for memory care. We have been on this road for 10 years. Most days he starts out fairly clear and then the confusion increases as the day goes, When he moved to AL I cried every day. Different things triggered the sense of loss and then the tears would flow. It took about 3 months for my emotions to settle down and about 6 months to actually adjust. I think he adjusted quicker than I did. Part of the adjustment is starting to find yourself again. My life still revolves around caring for my husband but I visit daily in the afternoon for an hour or two. You have to gradually find you new normal. What others do is only a hint to you of what you might do. You have to determine what you are comfortable with. Dementia is usually a long road and what you do now will probably change in the future. What I found was that if I was going to advocate for and care for my husband, I have to have a life where I do things that I like to do and need to do for my well-being and mental health. Good luck to you and remember to give yourself Grace in your process.

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@turtle4115 My husband does okay with skilled memory care staff but those that have minimum training in dementia care are not good for him. He needs a very calm reassuring and loving approach with redirection and deescalation for anxiety and agitation.
Last night they had an agency aid with no training in dementia care and he was very upset.
Fortunately the night nurse is excellent with him. She even FaceTimes me with him before he’s asleep and in the morning.
The first Saturday he was there, they had an agency aid who he pushed down on a bed, setting off calls to me and his doctor for a rescue med.
I’m afraid he will push someone again. He remembers his feelings.
Most days he feels safe with all the staff who really love him but it just takes one to set him off.
How have you or others handled this?
Since I am part of the same community I’m there often and visit every day.

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turtle4115 | @turtle4115 | 2 days ago
In reply to @maryvc "@turtle4115 My husband does okay with skilled memory care staff but those that have minimum training..." + (show)
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@turtle4115 My husband does okay with skilled memory care staff but those that have minimum training in dementia care are not good for him. He needs a very calm reassuring and loving approach with redirection and deescalation for anxiety and agitation.
Last night they had an agency aid with no training in dementia care and he was very upset.
Fortunately the night nurse is excellent with him. She even FaceTimes me with him before he’s asleep and in the morning.
The first Saturday he was there, they had an agency aid who he pushed down on a bed, setting off calls to me and his doctor for a rescue med.
I’m afraid he will push someone again. He remembers his feelings.
Most days he feels safe with all the staff who really love him but it just takes one to set him off.
How have you or others handled this?
Since I am part of the same community I’m there often and visit every day.

Jump to this post

@maryvc The first month my husband was in skilled care I am sure I drove the nursing supervisor crazy. Every time he was upset I would go to her and sit down and give her a short in-service on Lewy Body Dementia. The staff was not very familiar with the disease. She was wonderful. She listened and then worked with the nurses and aids to help them understand. They tended to think that he could do more than he could because even though he could converse he couldn't process what was being asked of him.
If your husband's issues only occur when an outside staff person is on, my first question would be can someone else take care of him. It would be in their best interest as well as his since he wouldn't be acting out. Either way the nurse on duty should be instructing that aid on how to best care for him. Speak with the nursing supervisor and point it out every time it happens. If nothing else they will make sure it happens to settle you down.
At this point our main job is to advocate for our husbands. I don't pester unless it's important and I praise the staff as much as possible because they do take really good care of him.

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maryvc | @maryvc | 1 day ago

Thank you. I just got this from his neurologist today
This from Dads neurologist

Today
The skin biopsy detected alpha-synuclein, the protein associated with Lewy body/Parkinson's Disease. This is likely the etiology of changes in his posture and possibly the tremor, but the nature of the tremor wasn't clearly characteristic.
At this time, the medications that he is taking for Alzheimer's disease will also help with Lewy body disease. I will continue to monitor his walking, balance, and tremor and if they worsen, medications targeting the movement issues can be prescribed.
His next visit is in August and we can re-evaluate both thinking and movement/tremor issues at that time.
Rhonna

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