My mom hasn't been a very nice person pretty much my whole life. She has a couple of people she is very nice too but not to me or other family members. My dad passed a month ago and she is staying with me. I make sure she is cared for with meals, laundry, etc. I try very hard to accommodate all of her needs.
Now that she also has dementia, the nastiness and biting my head off has ramped up to the point I'm in tears most days. She is not cooperative and every day is a battle. She has difficultly making any decisions and when I try to offer help, she goes off.
She would never willingly go to an assisted living of any sort. I've tried to find someone to stay with her in her own home but the cost is astronomical. She doesn't qualify for Medicaid and Medicare isn't enough of a help.
I just feel like I am going uphill in mud.
I have my mother in Memory Care Assisted Living b/c caring for her at home is impossible for me, for a wide variety of reasons. Costs for 24/7 care in home are astronomical, as you said, and most people simply can't afford it. You may have to wait for a crisis to hit before you can get her placed in Memory Care AL, unfortunately, as that's what many of us have had to do. Stubborn parents create situations where they remove their power of choice and allow the hospitals to MAKE that choice FOR them by not allowing them to return home alone. That's when AL is the only choice and you get to place her.
In the meantime, maybe you can hire someone to help her out for a few hours a day and leave it at that. Otherwise, do what you can for her and when she gets ugly, TELL her you don't appreciate it and that you're leaving for that reason and will return when she's in a better mood. Dementia or no dementia, they DO understand language, until they get very far advanced and develop difficulty understanding words.
Set some boundaries down about what you're willing to do, how long you'll stay, when you'll leave, and what you will and will not tolerate from her, behavior wise. Otherwise, YOU will start to break down yourself and then what?
Wishing you the best of luck with a difficult situation.
Dementia has made her negative, angry and downright rude at times.
Everything that goes wrong in her life is my fault. Everything that has dissapeared, I took or stole. Everything that I say or do is wrong.
When I go out, I come back and find that she has gone through my cupboards and taken some of my possessions. She lies most days and curses all the time.
All of this and more....... each day brings new challenges but you know what.
I might not like this new person in my mom's body (actually head) but I still love her.
Is it frustrating?, Yes. Is it hurtful?, Yes. Do I resent her sometimes?, Yes
There are so many times when I think, What did I ever do to deserve this and then it hits home. My mom would die if she knew how badly she was treating me. She would 100% agree with me if I said I wanted out (and sometimes I do) but deep down, this strong, intelligent, independent woman's life is falling apart and she can't understand why.
As frustrated and hurt as I feel, she is feeling fear and confusion and I now recognize the dementia (not her) for what it is and who she has become.
I know she loves me. I know she depends on me. I could never betray her in her time of need however unpleasant it is.
The one person that is 100% of the time there for her is the one she thrashes out at.
I will not lie, there are times that I cannot hide my feelings and I retaliate. There are times when I wish I would die (I have stage 4 cancer) but I could never do that to her. She is vulnerable and God gave me to her for this very reason. To care for her.
Our life paths are mapped out for us when we are born so don't beat yourself up just try and find ways to cope (practice makes perfect). Through trial and error you will find what works for you both.
Take a deep breath and clear your mind. We become strong because we have no choice. You will eventually learn where your strengths lay and how to use them.
Remember, Rome wasn't built in a day. Baby steps. One day at a time.
Sounds like I've mastered this dementia thing but I am only human and I am allowed to have feeling too but don't let them distract you from what is really important.
Mom might not deserve your love and respect at times but remember, It's not mom that's giving you a hard time, it's this cruel thing called dementia.
All the best and hang in there.
Did she manage in her own home prior to dad's death? Or was he the person handling everything for them? Is there a reason she cannot live alone in her house again?
If there is no way for her to function on her own in her own house, then that would be ruled out. To go to assisted living, even if she wanted to, will take money. To get help in your home will take money. Medicare can get you a visiting nurse weekly, some therapy sessions. It won't get hours of care to come into your home to help you. If you can afford all the bills for your house with her food, etc included, then use all of her SS money (and retirement, etc) to pay for whatever help you can get. If you go through an agency, you will pay a lot of money with about half of it going to the caregiver who comes in. If you happen to know someone - relative, friend, neighbor - who does this sort of thing, your money will stretch much further.
If she has real long term dementia, there will come a time that selling her house (for real market value - not some discounted rate to help out a relative) will afford more care if she stays in your home or will pay for facility care until she runs out of money. At that time, you could see an elder atty to set up what some call a Miller Trust to divert the amount of her money over the income limit for Medicaid to a trust (for her care). She could be eligible for a Medicaid bed.
I'm so sorry about your father's passing.
Well you tried, right? It doesn't sound like other family are willing to take her, and she can't continue on in your home as things stand. Even if you smoothed out her moods you should be honest with yourself and think about if that would really make things better.
First, get her to a her PCP or get a consult for a neuropsychologist for medical assessment and management. Your father's passing is a major life event, so not unreasonable to get an assessment. Let the doctor know ahead of time what issues are of concern. Have her sign off on allowing her medical information to be shared with you/family. Some of her behaviors may be due to your father's passing as well as her dementia (she's lost the routine she had with him, and routine is key for folks with the disease).
Make a list of the pros and cons of her staying in her home + aides, or a move to AL.
Understand that right now is as good as it gets with this disease, and that she will continue to decline and require more care. Talk with family and decide who should be POA. Start taking over financials, etc. Perhaps if you end up being the 'in-town' person who sees her most, then other family could help with doing finances, taxes, etc.
As you've noticed, she cannot juggle more than one idea or choice at a time and it agitates her to do so, so stop giving her choices to juggle. If she cannot accept help in her home then AL will be the way to go. Her ability to use insight, reasoning, and logic to make a decision is likely poor at best due to the disease, whether she recognizes her dementia or not.
Look at the market value on Zillow of homes comparable to hers in the neighborhood and consider selling the house to fund her in assisted living with an eventual move to memory care. Don't forget to look at group homes as an alternative, as they can be cheaper.
I also recommend looking at the threads over here: https://www.alzconnected.org/discussion.aspx
A companion that can take her out, watch TV and play music from her era, do word puzzles, and just chat may help a lot with her mood. If your mom has financial assets USE THEM to help pay for her care. An aide who is caring and helpful will pay for itself in everyone's well being.
You can own a home and still be eligible for Medicaid under certain conditions. Find a well qualified elder law attorney who can guide you to the legal way to arrange her finances in order to qualify for Community Medicaid, which allows for in-home aides and supplies.
I understand how overwhelming this all is, but you've taken on a role that will just snowball in time. Resist your urge to do it alone.
You do have to take care of yourself because no one else will.
If you let it be known to mom's Dr that you can no longer care for her, if she ever goes in to the Hospital you can always let them know when ir comes time to discharge her that she diesn't have a place abd you're no longer able to care for her and the Social Worker at the Hospital will find a place that accepts mom's Insurance.
You might even call Adult Protective Service and they can help you.
As my MIL aged, her hatred of me became so apparent. She literally could not/cannot say a nice thing (or even a 'nothing') to me without it having underlying vitriol. I tried, goodness knows, for so many years and finally just gave up while I was battling cancer. She'd sit and look at me say "Are you dying? How much longer do they give you?"...how does one respond to that?
I just 'divorced her'. Told her I would not bother her with my onerous presence ever again, took a Diet Coke out of the fridge and hit the road. Have not seen or spoken to her in 2 years. She was FURIOUS and I heard about it for a while, and now I will not even entertain a thought about her.
OF COURSE you can put her in a NH. She may have to be Medicaid paid--but so what? Start doing your research and do check out several places before you make the leap, so to speak.
And OF COURSE she is not going to go 'willingly'. I know exactly 2 people who went 'willingly' to the NH's they'd moved into. Beautiful, wonderful ladies who did not have a selfish bone in their bodies. I admire that kind of selflessness so much. ANd guess what? They both made a LOT of new friends, family was HAPPY to come visit and their lives improved a ton.
But they were kind and sweet individuals to start with. I imagine my MIL will age in place, ONE friend who still yalks to her and her DD taking on all the onerous crap. She has dis-inhertired my DH as she didn't want ME to have any of her money, but, poor man, he is still the executor.
Honestly, I walk away. I ignore. My MIL likes to supervise me in the kitchen (it drives me C-R-A-Z-Y as she glares, and shakes her head, and criticizes everything I do - also know, she’s never cooked a day in her life).
I pretend she isn’t there when she’s like this. I put on music that I enjoy, and I bump the music way up and she goes away. If she barks at me, I have specific things I say like, “That’s not kind,” or “Now, now. Don’t be nasty…” or “If you’re rude, I won’t sit with you.” When it continues, I leave. I go elsewhere and shut the door. I play my music again, or watch tv, or fold laundry elsewhere, and we each get our own space. Later on, I pretend nothing has happened (because my MIL has probably forgotten anyway) and try my best to let it slide off my back. It’s not always easy, but I kind of look at it like, “SOMEONE has to be the adult…”
DEEP BREATH!!!! You can do it!
Medicare has nothing to do with Long-term care. It only pays for Rehab. 20days 100%, 21st to 100 days 50%. The other 50% is out of pocket unless the person has a good supplimental which will pay in part or whole.