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?
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You can't focus on your mother's 'wants' now but on her 'needs'. We all 'want' things, like to win the lottery. To stay in our own homes until we perish, too, regardless of whether that's a realistic idea or not. With dementia, it's likely an unrealistic idea your mother has put into her head, along with the idea that it's your job to entertain her day & night. And, with dementia, once they get an idea stuck in their head's, unfortunately, you can't get it out of there with a chisel. It's the nature OF dementia; stubborn pigheadedness and the inability to understand much of anything anymore. Sad but true.
So........this is going to become about what your mother Needs vs. what she Wants and how you are going to go about making sure she's properly taken care of. You can do that by hiring in-home help 24/7, when the time comes, IF she can afford that, or, by placing her in a Memory Care Assisted Living residence where care and help is available 24/7 at a less expensive rate.
She doesn't have to 'love' the caregivers that come in to help her, she just has to accept their help.
You have to tell your mom, repeatedly, that you are Not Available after 5 pm (or whatever time you determine) because you have other family obligations that need to be met. Period. No further explanations. With dementia, again, you are likely going to have to repeat this same phrase every single day for the rest of her life. No joke. Be strong, be adamant and be FIRM. Dementia or no dementia, they look for cracks to sneak in through and say AHA! I KNEW she didn't really mean it!!!! Then the gig is up.
You can have understanding & compassion for your mother's situation in ADDITION to preserving your own marriage, lifestyle, and job. This is a no-win situation, trust me, I know. Everyone loses. You lose, your husband loses, your mom loses. Dementia destroys everything it comes into contact with. It can get very ugly and very demanding and very unreasonable too.
I know from where I speak b/c my soon to be 94 y/o mother has moderate dementia & lives in a Memory Care Assisted Living home 4 miles away. She tells me daily that there is Nothing Wrong With Me & Everyone Here Knows It. She has no idea why she's living there, and on and on. Meanwhile, she has no idea what day it is or what's going on in general. She just knows how to complain and vehemently argue every single word I say to her. Like I said, everyone loses with dementia.
So have your ducks lined up. Have a Plan B in place for if/when things go downhill fast & the in home help isn't sufficient. It sometimes works out that way. Read up on dementia and watch Teepa Snow videos on YouTube. They're very helpful. Go to Alzheimers.org to see what you can expect in the future, and what the stages of dementia are. Go from there.
Wishing you the best of luck moving forward & preserving your own health & sanity in the process.
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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.
I rambled a lot but I hope I was able to help you.
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.
I'm sorry about your husband. The pandemic has made things extra hard this year and it's affecting everyone. It's possible your son is very distracted with his own challenges.
The bigger picture is you are bored living alone. Out of curiosity does your apartment complex normally have activities for seniors? Senior living complexes seem to be the best places to prevent isolation and foster new relationships. If your current place is not like this, maybe a move would be good for you?
Also have you applied with your local Area on Aging Agency? You can sign up for all kinds of things that would bring people around and open up opportunities for socialization.
I realize that we are still having this pandemic, but a vaccine seems to be on the horizon so hopefully some normalcy will resume and then you can explore some options for increased socialization.
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 have to be disiplined about this the minute you start giving in she has got you!
Would it be possible for her to have a pet? Not only does it help with loneliness but studies show it helps with our health.
once Covid is in the rear view mirror and you travel again, she would be able to go to a senior center to see folks and have activities, go to church or temple, etc.
You do not need to be her whole social world and do not feel guilty that you recognize that. As people age, their world narrows and gets smaller and this pandemic has made this even more so.
When she begins to need more care to the point it requires 24/7 that will be exorbitant. Much more than Assisted living or even LTC.
Please be kind to yourself- you are not selfish for wanting time to yourself. We need that as much as the air we breathe!