Mom and Dad relocated to KS from Chicago area 7 years ago after 40+ years in the house I grew up in (ages 82 and 81 respectively) I am 57 and have been on my own and happily married to the same man since the age of 20. Their new home is just across the street from me. Dad passed away 2 years ago due to complications of Parkinson's. Mom is now 89 and physically healthy for a woman of her age!
Mom was officially diagnosed with dementia shortly after dad passed (dad saw it all coming) and insists on staying in her home, which thankfully she can afford. We have employed caregivers to come and keep her company and to assist with household tasks/shopping. Mom says she is lonely still and wants to be at my house as soon as caregivers leave for the night. With COIVD this has escalated. Every time I leave my house (I only go grocery shopping or to run errands for my husband who is a self employed construction worker) I get "the call". "Where are you going?" "Will you be sleeping at home tonight?" "If you're doing something fun, I'll come with". We include mom in every outdoor activity with our close friends which occurs almost once a week here at our place. We don't take her shopping or to other's homes.
Let me back up a bit; I traveled for a living up to 6 months per year, until COVID. Mom had a massive heart attack one night 7 months after dad passed. I just happened to be home at the time. One helicopter flight, surgery and 3 nights in the hospital later, she's fine. I totally understand her fears/anxiety, but she was never a call every day/week/or even month kind of mom so as an independent self employed empty nester living so far from my parents for so long, I struggle with this new neediness.
We've made all sorts of suggestions, including overnight caregivers and get the "I don't want a stranger sleeping in my house" answer every time. Remember, she's the one who doesn't want to live in a nursing home or assisted living. She doesn't seem to want to even try to engage with caregivers. She only wants me and my husband to fill her loneliness. God heal my selfishness!
I will eventually go back to traveling and my husband has already been down this road with his mother who passed the same year as Dad and I don't want the burden him with the added stress once I start traveling again. What can I do once I'm gone for weeks at a time? Siblings live in CA and OH and both have jobs they cannot just walk away from to come stay with Mom while I do my job. If I could afford to stay home, I would. I'm sure we'll need to increase caregiver hours from just 4 hours a day to possibly 8 but will that really satisfy her needs?
Meanwhile what are some suggestions/insights to deal with my new role and how to kindly tell mom that we need at least some evenings to ourselves for our own personal and marital preservation?
I know that I need more understanding and compassion for her situation. As someone who's been self-employed in sales for almost 20 years my superpower is being the health advocate/coordinator, not the nurse.....help?
For now, you can start looking at some AL (MC) places, as eventually it might not be safe for her to remain in her own home. If she's healthy enough and currently only needs 4 hours of "help", she's okay, but that can change rather quickly with dementia, so it's best to start preparing.
Meanwhile, if you have to go out, is there any way to move the car to a location out of her sight and then get to it in a way she can't see you? Clearly she's "watching" or at least hears the car or garage door. If she does know you're going out and calls, try to make your destination something totally unpalatable to her. Dropping the car for repairs, getting a colonoscopy, etc.
Have some discussion with the care-givers. Perhaps they are stymied as to how to get her "engaged." See if some brainstorming might help. If not, perhaps try some others. As for having strangers in the house, if these aides have been there for a while, they aren't exactly strangers. If you needed to hire overnight people, then yes, they would be strangers, so maybe get them on board for a few hours/day in addition to the 4 hours covered now. Perhaps she'll get used to them?
Although a facility is expensive, it is less than hiring 24/7 help in the home (exception *may* be if you could find a live in, but finding the right person could take some time!)
You do need your own space and time. You are also going to have to return to work at some point, so hopefully you can find the right combination of aides or the right place for her. You indicate dad passed 2 years ago, which was when she was dxed, but also that he saw it coming, so it's been more than 2 years since the onset. The very early stages can be missed by family or doctors who don't see the person often or for long, but your dad could see it, since he lived it!
My mother was also relatively healthy and was 90, maybe 91 when it became apparent to me she was having difficulty with memory. I had to learn a LOT and QUICKLY! She was okay to be at home for a little longer, but it was progressing. Sometimes it happens in stages, like stepping down and then being stable for a while. This is how she's been. The problem becomes when their reasoning and understanding doesn't work anymore. Thankfully her "bruised" leg (didn't seek help, didn't tell us!) which turned out to be cellulitis happened just prior to the move to MC (refused aides and wasn't going to move!) Her neighbor called to tell me and OB was arriving the next night, so his job was to take/send a pic and then get her butt to the ER!
Knowing that the situation can change so quickly, all of a sudden, when you're used to it being stable is important. 9 months after moving to MC (hounding YB every time he visited to take her back to her condo), she forgot the condo and starting focusing on her own mother (gone over 40 yrs at that time) AND the house we lived in prior to the condo (sold 25 yrs before the "change".) She's been more or less in that 40+ year ago life for quite a while now. This month makes 4 years in MC. She did have a stroke early Oct, but as far as I can tell it hasn't pushed her further back, just impacts her right side, swallowing, slurring. She has been losing weight now, so between dementia, hearing, stroke and finally weight loss, we have her on hospice.
My point talking about progression with my mother is you just don't know when she might move to the next stage and need more help. I would try working with the aides you have, maybe bring in some others, to find a good "fit" and see if the can engage her in activities. Games, puzzles, even folding laundry, to give her sense of purpose?
I don't envy you. My mother lived 1.5 hrs away, and I couldn't take her in, so next best was a nice place near where I live!
Maybe your mother needs to be talked to in a way that she'll understand. She was married for a long time herself, so maybe she'll remember about couples needing some evening to themselves with no one there. If she isn't engaging with her caregivers, try talking to them. It could be that they're not a good fit for her. Then make yourself clear, that you cannot and won't be responsible for giving her a social life. If she's still in good health get her involved with the senior center in your area or even adult day care a few times a week. Then be insistent on an overnight caregiver if she's afraid to stay alone. I know it sounds harsh, but there has to be boundaries.
You are thinking this all out just great. You have and can enumerate all the things, and you understand them. Putting them together is leading eventually to one conclusion I think.
You will find some on Forum who thing that your life should now be, in your Mom's remaining years, taking her into your home and devoting yourself to her remaining years. You will find some on Forum who believe that this is not only NOT the best answer for some of us, but that we are not CAPABLE of making that sacrifice (count me into that line).
Only you can make the decisions going forward. You can try to limit your Mother in her expectations and needs; I suspect, even if that works for a while, it will not over time.
You have tried to do this so RIGHT, with Mom just across the street. My heart goes out to you. But I do trust you will make your own decision, no matter the difficulty involved....the decision that is best (if not perfect) for you.
Your mother's brain is broken and she needs more constant attention than just daytime aides can give.
Find a good Asssited Living Community, one that also has Memory Care for when mom progresses. Get mom on the wait list.
When the vaccine comes on line, get mom in there for a month of respite. I can almost guarantee you that she will thrive there.