My husband and I have been caring for my mom on and off since she was diagnosed with early-onset Alzheimer’s in 2018. She lived with us during COVID, but we recently moved her into a memory care facility. It was a hard decision for us…to put it lightly. She is only 63. My husband and I are in our early 30s and have no experience with this type of care. We don’t have a lot of extra help (I’m an only child) and want to have a family of our own. While I feel that Mom is getting more activity at her facility since we both work, I’m still feeling torn about the decision. She seems content there at times, but it is always hard for us to leave (we visit every week). She says she wants to go “home,” but I know that she means her childhood home, and I can’t meet that need. Trying to meet her emotional needs has worn us out since it is usually impossible. I guess I’m wondering if another facility would be better for her or if she will always feel this way no matter where she is/how much support she feels she has. I’m also wondering how others have cared for younger loved ones with dementia.

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Young or old, it's very, very hard to place a loved one in a memory care facility, but you've done the right thing, and your mom will settle in.

As people here say again and again, when the loved one says they want to go home, you just deflect. You're already ahead of the game because you know that "home" isn't even your home but her childhood home, and that can't be done no matter how much she wants it.

Try to stop putting pressure on yourself to see to her emotional needs. Just deflect the conversation elsewhere, ask questions about what she's been doing during the week, and practice selective deafness about her desires that can't be fulfilled.

She will settle in -- it takes time. Go easy on yourself. It takes time to decompress yourself from three years of caregiving, too.
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Reply to MJ1929

My mother lives in Memory Care Assisted Living and always talks about wanting to "go home". Home can mean anything from going back to New York to Florida to a "different hotel" than the one she thinks she's living in right now.

Home is a place in time rather than a brick and mortar building. Most elders with dementia talk about going home constantly. They have no idea where it is or what it means, in most cases. We may take it literally when what they're saying is entirely figurative.

What your mom wants is her old life back, when she was 50 and running around doing as she pleased, before the Alz diagnosis wreaked havoc on her. You can't give her that, naturally. But you can keep her safe in her Memory Care Assisted Living ALF and be there for her when she needs to be talked off of whatever ledge she's on at any given moment.

My mother loves to tell me how she 'hates it' at her MC ALF, so I tell her she can either stay where she is or I can place her at a Skilled Nursing Facility with a roommate under Medicaid; those are the only choices available since she's wheelchair bound with advanced dementia & lots of other issues. I think we're always 'torn' about these situations, but in reality, there is no 'good' answer because it's the DISEASE that's the problem, not where they're living or what we're doing or not doing. THAT is what they're railing against, in my opinion.

It's also not about what age they're affected with dementia; some folks in my mom's ALF are much younger (my mother is 94) and some are 100. When I worked in a MC ALF in 2019/2020, we had women there in their 50s! Dementia & ALZ strikes at younger ages these days, unfortunately, and can advance quickly, forcing placement at an age we consider 'too young' for managed care. But dementia is an equal opportunity affliction, isn't it? Hateful but true statement. Most of us are simply not equipped or capable of caring for dementia patients in our own homes, and that's the absolute truth of the matter.

You're not wrong for placing your mom; you're just feeling badly b/c she's saying she wants to go home, not even knowing what she means, more than likely. You're probably going to get our regular posters in here telling you that she means she wants you to take her HOME with YOU, that she's 'miserable', and that it's your obligation to do that b/c she took care of you when you were a baby, yada yada. Remember to take what you like from the internet & LEAVE the rest, ok?

Wishing you the best of luck coming to terms with your decision & knowing it was the right one for you.
Helpful Answer (2)
Reply to lealonnie1

I think you just have to give it more time. Why not reassess in about 3 to 6 months? Your Mom has no short term memory, so it’s going to take her a while doing a daily routine that makes her feel comfortable in her new place. Nothing’s going to seem familiar to her for a while. If she’s already having times where she’s content, and getting more engagement, then that’s really good. It took my mom about 6 weeks to orient to her AL, then about another 2 months to get into the routines, and a little longer to seem completely at ease. So started early February, pretty even keeled by late May, settled and comfortable daily by mid June. Everyone’s mileage may vary. If you still like the facility don’t second guess yourself, give it some time. You have a good understanding of where her mind’s at.
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Reply to ElizabethY

If your mother has only recently entered a memory care facility, she really needs much more time to adjust to her surroundings before you can fairly consider trying another change.

Since she has a diagnosis, you can assume that one of her most important needs at present is consistency and structure. Some people fall right into a comfortable, predictable “groove” others can take as long as a few months.

The reactions you describe are actually fairly reasonable and fairly mild compared to some people entering memory care. My own LO attempted so many escapes from her locked MC floor that a picture was posted in the entry way to alert the staff. After several months she began to refer to the residence as “home” and/or her “hotel”.

Her own home had been sold just after we’d placed her, and she’d been born there. You may have no way to know what your mom means by “home”, and she may not know either.

It really is impossible to “meet her emotional needs” because they are not based on reactions to real things. The impossible part really isn’t how she reacts to what you’ve tried to do, but rather something that passes through her damaged brain and triggers an emotion with some connection that may have no interpretation, even for her herself.

She won’t “always feel this way” because truly emotions and her feelings may have a sense of disconnect as they are expressed, or sadly, may occasionally be spot on. Either way, what you do may sometimes seem to make her happy or not, but not make much difference to her at all.

If you stay right where she is “in the moment”, and be ready to change with her to another idea or thought when she does, it can help you both.

To me, the hardest part of early diagnosed dementia is the more unexpected jolt as LOs realize that something so difficult is happening. What might be expected at 90 might be much more shocking when the victim is as young as your mom was when diagnosed.

See how this goes as she adjusts and acclimates herself. What is happening just now is harder for you who love her than for her. Once you see her becoming more secure, you will feel more confident that you have made a loving decision on her behalf.
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Reply to AnnReid

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