I’m new here and so overwhelmed. Am I normal for feeling this way?
Hello everyone. I hope someone can take the time to read what I’m about to write. I feel like I could go on forever in what I’m about to relay.
My mother is 80 and has Vascular Dementia. I think she’s had the diagnosis a year and a half, although she certainly had symptoms for years. I am 50 and divorced and live with her. My kids are grown. I have Lupus with multiple other overlapping conditions and am disabled. I am also at my wits end.
To most people on the outside my mom is a sweet person. I live with her and see the other side. She is paranoid and has developed so many annoying habits that I tolerate and bite my tongue as much as I can. She has accused me of being evil, saying my dark brown eyes turn black when I’m angry. She has also said I’m eavesdropping on her phone calls when in fact she talks so loud you can hear it plainly through the wall. She resorted to standing in her closet and whispering on a phone call to her sister (She admitted this to me). She has cut me up to family, making me out to be a bad daughter. My brother lives states away and has basically washed his hands of the whole situation because he can’t tolerate her. My father died of COPD several years ago, so it’s me and my kids who don’t live at home. I told my dad before he died I’d look after her. I’ve tried.
We are now at the 3 week point of not speaking because she got lost on the way home from the store and I was trying to find out what street she ended up on. It turned into her yelling "it’s not me, it’s you not understanding! Why are you so defensive?” And me telling her "I’m not defensive mom but if you call me defensive again I’ll get defensive”.
It’s her being passive aggressive to me, slamming doors, turning on the living room tv at 4:30 am and turning it up loud, when she has a nice tv in her bedroom. It’s her smiling at me and saying "it’s all in my head isn’t it?” This is not a nice smile either, it’s a very nasty smile. I’ve just looked after her while she recovered from knee replacement and physically she’s doing great.
I've just seen she’s taken all photos off her bedroom wall. No picture of her kids, her grandkids, her dog... nothing but an American flag. She’s become a religious and political nut and she thinks I’m heading to h*ll.
She thankfully is going to visit my Aunt in Arizona- for a few months. This is the Aunt she has cut me up to. This Aunt also has a dementia related illness. My Aunt and Uncle are coming to pick her up. She had it on her calendar- and thinks she’s being sneaky about it- my Aunt is getting her in the middle of the night to avoid me knowing. I reviewed my phone record because she’s on my plan- and she’s texting my Aunt at 2 in the morning instead of sleeping.
I don’t like her anymore and I feel so bad. I have health issues and she’s affecting my health. I think while she’s gone I need to look into getting my own apartment. It would be financially tough because we split the bills, but I’d be so much happier.
I worry about her, but I think she’d be ok as long as I check in on her. I just can’t do this anymore. She’s making me miserable and I’m counting the days until she goes to Arizona (less than a month away).
I feel like a bad daughter and I know I’m not. If I move out, she’s going to hate me even more and I’ll be viewed by my family as an awful
person. At this point I think I have to for my sanity. She’s going to be gone til Feb- so this will give me a break and time to plan.
Thank you for listening. I’m at the end of my rope here..... just had to vent.
Any suggestions? Am I normal for feeling this way?
Julie
8 Answers
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Move out. Do it while she's gone visiting her sister, which, by the way, sounds like a sh*t show like none other, with the sister sneaking in to pick her up in the middle of the night to 'avoid you knowing.' If they all make it through that situation alive, it will be a real miracle. Demented elders driving and 'caring for' other demented elders is a recipe for disaster for SURE! I'm sure there's little to nothing you can do to avoid this little escapade they've chosen to undertake........so here's wishing them good luck and Godspeed, which they're certainly going to need.
You're not a bad daughter; you are trying to have a good relationship with a woman who's got a diseased brain. Meaning, it's not going to happen. Your health is going to continue to deteriorate as a result, while she'll go about her merry way and possibly live to 100. My mother is almost 94 and when we saw her at a window visit today, she looks great! Fat and healthy, even though she doesn't know what day it is or what the heck is going on.
And who cares what the family thinks about you moving out? If they think it's such a bad thing, let THEM come and care for mommy dearest! You have to live YOUR best life, not worry about what others think. Let your mother know you'll be available to her at certain times and you're willing to pick things up for her at the store, etc., but that it's time you live in your own place. It has nothing to do with lack of love, just the need for your own space.
Wishing you the best of luck forging ahead with your OWN life now. You deserve to.
Your mother may be headed for a place where she needs placement. That will be up to her or whomever has POA over her; I suggest that not be you. You have enough on your plate. Your mother's assets will aid her in finding placement and if not, there is medicaid. She is very unlikely to submit herself to your caring as POA and I wouldn't try to do that. If need be the State can be appointed to guardianship if her other child chooses not to. And it does decide that he long ago made this move for his own good.
Do understand that if you stay, you are doing so by choice and you are doing so understanding the risk/benefit ratio for you yourself.
As you say, as to promises to a father who is now not able to HOLD you to any promise, you did what you could and are now unable to tolerate it for your own good.
You will be far from the first child to be unable to tolerate caring for a parent ongoing. I know that you know that autoimmune illness doesn't do well with the cortisol feed of constant stress. Do what is right. And by that I mean RIGHT for the only person on EARTH you have the slightest control over, and that is you, yourself. I wish you the best of luck.
You are dealing with more than you should have to. Do you talk with the aunt often? Maybe mom will decide to move closer to her sister.
Yes, look for your own apartment. Do you have a case worker? Ther may be help there to help you find a place? Maybe mom will then have to find something more suited to her needs. You DO NOT have to be the only one. There are resources.
There is nothing easy when taking care of someone with dementia.
I suggest that you start a discussion with mom that she would be better in Assisted Living or as the dementia progresses Memory Care.
By the way getting lost is probably a good indication that she should not be driving.
You have health conditions that can become worse if you get overly stressed. You do not need that not just for your sanity but for your physical health.
You should begin telling your mom this and part of your health should be part of the discussion for AL or MC choice for your mom. Another option would be to hire a caregiver for her (she pays for that) and you step back as caregiver. If you can move out. Or if that is not possible can an "in-law suite" be made part of the house you are in now. You can move into a little in law suite so you can limit contact, aggravation.
The big problem with dementia is she will continue to decline and the things that drive you nuts now will continue to drive you nuts and more of what I like to call "quirks" will be added to the mix.
I do hope that you have both seen an Elder Care Attorney. I also hope that she has a POLST completed and that you know her wishes. With Vascular Dementia the possibility of a stroke is high and the big question is what would you and she elect to do. Caring for someone post stroke is difficult enough but add dementia into that and rehab gets a lot more difficult, if it is even possible.
Also begin preparations for Medicaid if that is likely down the road.
You can also check with your local Senior Center to find out if there are any services she may qualify for. You might be able to do much of this while she is out of town.
Might even want to put the idea in her head that Arizona is a nice place to live 😉
I'm definitely no expert, but I don't think you should feel bad about moving. It's hard for children to hear a parent say these things about them, even if the condition they have is what causes them to say it. It can be physically and emotionally draining for you.
I'm sure your mom would qualify for a home health care aid, someone who is trained to care for people with that kind of condition. That way you know she still has someone to be there with her, if you move.
Might give you more peace about the decision. That way she can get the care she needs. And you can take care of your health.
Hope You find peace in whatever decision you make!
It definitely sounds like for your mental and physical health, that you should in fact be looking for a new place for yourself to live, and or a nice facility for mom to return to(if and when she returns). Thankfully with her being gone for several months, it will give you time to "get your ducks in a row".
But I do want you to keep in mind that people diagnosed with vascular dementia(the most aggressive of the dementias), are given a 5 year life expectancy, so if in fact your mom does have this dementia, she probably doesn't have much time left here for you to have to deal with her. I don't tell you this to upset you or scare you, it's just a fact. My husband was diagnosed with vascular dementia in July 2018, even though I knew something was going on well before then, and he just passed away 5 weeks ago.
So while your mom drives you crazy most days, I hope that you can find some joy in spending time with her, for however long she's still here, even if that means you coming to visit from your new place once a week or so. God bless you.