Are any of you experienced in living with your dementia spouse in a "hybrid" living together at a memory care facility?

I cannot imagine the costs to your emotional and mental health of living in memory care as a resident not needing their services, surrounded by residents with dementia. This will come with experiencing a plethora of extreme behaviors daily (and nightly) and seeing how the sausage is made (i.e. witnessing staff at times perhaps not dealing with various things in the way you would or you would hope) Your husband is shadowing you, common with dementia. It doesn’t mean you so completely uproot your living situation to accommodate this to keep him safe and cared for. I hope you’ll take regular breaks outside of the facility to maintain your independence and wellbeing

I don't understand this. "Hybrid" or continuing care facilities provide varied levels of care. They may have an IL, AL, MC, or skilled nursing. These are totally separate units. Do you intend to live in the MC unit with your husband? MC spaces are often very limited with long waiting lists. Are you hoping to take a MC bed away from someone who is qualified to need MC? Even if this were possible, I can't see it happening. They are not licensed to serve someone who does not require that high level of care. Besides it would be no life for you and the cost of MC would be much more for you than IL. It would be AWFUL if dementia patients were denied access to MC as it fills up with independent spouses. Choose a facility where he can be in MC and you can be in IL or AL. Time to accept the reality of your situation. He needs specialized care and you don't. I believe you are mistaken and need to look into this further.

Try it for one week, only commit to MC on a trial basis. There is no way on earth I could do it, nor would I want to. The idea is to live YOUR life while he lives HIS life and you go visit him in MC. Cohabitating in the same room in MC would be a nightmare, to be blunt. The "shadowing" factor would no longer be an issue if you weren't there. DH would have other folks to interact with and staff to help him instead of needing to cling to you.

Please understand something here Donna. You matter too. A lot. Giving up your life to live in a Memory Care unit w/o dementia is agreeing to give up your life in favor of your husband's. Either stay home or go into AL IF YOU NEED AL. Hopefully Fawnby will comment bc her DH lives in MC w/o her and is doing very well.

Wishing you the best of luck with all of this.

Just a reminder to you all that this OP is the same one who was looking for male companionship online and made her children mad over it, and is also the one who said that she hated and resented her husband and has for a long time, and didn't want him touching her in any way.
I personally find it hard to believe that she's actually willing to move anywhere with her husband but instead wants him out of their home so she can get on with living her life without him.

You are the second spouse I have heard mention this recently.

A childhood friend who was recently diagnosed with Lewy Bodies following a 6 yr diagnosis of Pure Autonomic Failure then a fall that resulted in brain surgery and now LBD has him resigned to moving into a MC with his wife.
He can’t imagine being anywhere else.

She is currently back in the hospital from an unsuccessful rehab stay in an effort to get her on medication to help her manage her symptoms. They hope to go back to rehab before the memory care.

I wonder how you would be able to get rest with 24/7 caregiving and constant staff interruptions?
Does the facility you are looking at have other resident independent spouses? The one my friend’s spouse spoke of even offers two bedroom units. Hopefully others have more information.

I hope you find it a solution that considers your health as well as that of your DH.

When you say you "decided to skip the AL and just go straight to MC", doesn't the admins of the facility usually decide what level of care a person needs?

Will you be living in the MC wing with him? If so, have you thought about the lack of privacy and boundaries that the other residents will create?

Once he needs LTC, how will that work? Will you move back to IL when this happens?

When you say, " I have been unable to leave him where he can't see me", is that because you can't/won't leave him, or because he is "shadowing" and gets upset when he thinks you're gone? Because if it's the latter, this is a phase that passes.

More info would be helpful.

What kind of life is it going to be for you living in a MC facility? I simply cannot fathom doing something like this. I'm just so sorry for both of you.

My MIL lived as Healthy Spouse with FIL with PD in assisted living. They had what would be a semi private suite for two people. Basically two small bedrooms connected to one bathroom. They squeezed two twin beds into one room and then put two recliners and a tv in the other. It worked after MiL was hospitalized due to arrhythmia from lack of sleep and she finally agreed to let the staff care for him overnight while she took strong sleep aides so she could tune out his near constant calling for her. She had a smaller monthly fee because she wasn’t getting any care but she was taking a bed and eating all her meals there. It can work but it isn’t easy.

In your situation the one spouse stays in AL and the Dementia spouse goes to MC. Then AL spouse visits MC spouse. Its one thing to live with a person with Dementia but to live with a bunch of them? The one thing that would bug me is the shadowing. I would think you'd want some relief from caring for your husband at this stage.

Thanks Lea, for suggesting I comment! My husband is in an excellent memory care unit and has lived there for more than a year and a half. We were always together before he needed facility care; we adore each other, and I am there almost every day. I just returned from feeding him lunch a few minutes ago.

I wouldn't do what you are planning to do. Being surrounded by residents with dementia is beyond what you could possibly imagine without having done it. I'm very fond of the residents in his care facility; I've learned their personalities, speak with most of them every time I visit, and am constantly amazed at how much they are still getting out of life.

BUT. One of them sings in a very high soprano about half of her waking day. She beats out the rhythm on anything around - the wood dining table, her chair, even hitting one fist with the other for hours. They put padded gloves on her so she won't hurt herself. They can get her to stop and she takes medication, but nothing lasts long in modifying her behavior. Most of the residents are hard of hearing, which necessitates speaking loudly when we interact. There are alarms that go off day and night to signal who might be ready to stand up, get out of bed, etc. One lady constantly walks around and around the common areas, and she tries to go into everyone's room. The aides watch her and stop her from getting into places she shouldn't. They also put back the things she's grabbed on her way.

At least two people yell "help, help" a lot of the time. They don't need help, they are just scared. The aides reassure them, but that only works for a while. Then there is the shouter. He shouts something, more like barking. He takes meds for it and fortunately is beginning to sleep more, so he's mostly in his room now, thank goodness. These residents are the kind of people who would be assigned to what was once called an insane asylum. One famous one was in England, and the official name of it was "Bethlem," like the town where Jesus was born. It was nicknamed Bedlam, and its reputation for chaos became a synonym for insanity and disorder. When we say that someone is "raising bedlam," that's why.

There are only 16 residents in my husband's unit. I can't imagine living onsite full-time as you're planning. As your husband transits the dementia journey, he may not continue to shadow you. By living on his own in a good facility, he has a chance to watch all the things going on around him and will be entertained and make friends. If you're there, not so much. If you want to visit him all day while living elsewhere, fine. You and the facility might be able to wean him from his fixation on you, which would be better for you and for him.

I'm friends with a number of spouses who have loved ones in our unit. The unanimous feeling is "thank God we can go home." Sometimes we leave in tears for what our LO is going through. To walk into our own houses, even though our LOs no longer live there, saves our sanity. To get our thoughts back to positive, we can stare at the wall if we want to, and in the silence that surrounds us, we recover from the madness that is now part of our lives. The loneliness is incredible, but we leave behind the noise, hubbub and yes, bedlam, knowing that our spouses are safe and content where they are. We are keeping ourselves mentally fit to live another day of overseeing the many facets of their care, for which we need to be the best that we can be. I, for one, would not be at the top of my game if I lived where he is now. And then what? There is no one who can do for him what I do now.

Please reconsider! It's not a good idea AT ALL.