My mom is 80-years-old and has had Parkinson’s since she was 50. It was very slowly progressing for her up until a year ago. She’s had a rapid decline in her mobility, has frequent UTIs, awful back aches and just had a hysterectomy and is recovering from shingles. She is sometimes very lucid and other times extremely confused. I would say she’s 70% with the program and 30% not. She suffers from hallucinations at night. She has been in and out of the ER, hospital and nursing home rehab over the past year.
She lives in a large home with her partner of 38 years. We have installed grab bars for her in many places. We have had a stair chair installed as well. She can get around her house on a walker, but she is very weak and does not have good balance at all, she insists that no one helps her ever. She refuses to be pushed in a wheelchair. She is extremely demanding of her partner. “Get me this, bring me that”. He is completely burnt out and depressed and he is 78 years old himself. He has stated that he will not help her anymore.
Over the past year, I spent hundreds of hours, going through Mom‘s long-term insurance plan, her Medicare plan and researching every single home health aide option for her. I’ve set up different levels of care for her in her home. Provided a life alert pendant for her and other safety measures in her home. I explained to her exactly how her health insurance plan works. I jumped through hoops to get her long-term insurance claims started for her. Spent so many hours on the phone, getting Physician’s signatures, filling out paperwork and coordinating care for her. And now, she has canceled everything. And, very rarely does she ever say thank you or please or even recognize any of the work I have done for her.
She is extremely tight with her money, (which she has plenty of) because she does not want to begin to pay for any help until she is bedridden. In the meantime, my brothers and I are extremely stressed out. Because she has cognitive issues, she’s not able to make phone calls for herself to her doctors, or to set up any kind of care for herself. And, she will not allow us to help her because she is determined to do everything herself.
I’m a stay at home Mom, I live two hours away. I drive back and forth to her house every-time there is an emergency.
My younger brother who lives 30 minutes from her is her Health Care Representative, but not until the Physician signs the paperwork stating she is no longer able to make her own decisions. And maybe this has to go to court first, I do not know.
I have done extensive research on assisted-living facilities in her area. She will not go because of the stigma attached. I believe Mom would rather die in her home from a bad fall then ever leave it. Also, when I set up home health aide service for her she fires them because she does not like the color of their skin, they are lazy and her and her partner do not like having anyone in their home. I’m so sick of it all and I do not know what to do anymore.
Any advice and/or support here is appreciated.
There will come a time when she will be hospitalized and you can have her evaluated for 24/7 care. This is when you and her partner refuse to care for her. To stay in her home she must pay for a caregiver. Otherwise, its an unsafe discharge and she must go to an AL or LTC.
If mom is capable of making her own decisions and choices then you need to back off and let her. Why burn yourself out too by letting mom call the shots?
If mom has a medical emergency call 911 and have her taken to the hospital. Stop running up there for every single emergency. It sounds exhausting just reading all the things you are trying to do.
I would be pissed if I did ALL that work and she undid it all. So the only choice is for you to just stop. Stop running around and doing for mom. She doesn't appreciate it anyway and you need to focus on yourself and your own family.
Eventually something will happen and she will need to be in a facility.
What, btw, is the "stigma" associated with Assisted Living?
If you can't get thru to mom, you'll have to wait for the bf to leave, for her to have a crisis, and THEN be forced into managed care where she belonged all along. Then call the LTC policyholder service phone number to see what all they cover.
Good luck to you.
My mom was greatfull for the help at first, then again when my sister bailed she was very appreciative. Then slowly over the course of a year she got more and more demanding. I backed off like 6 months ago, things have been getting much better, as of lately.
I think her partner should do the same. They sound like huge enablers.
Best of luck
I would do whatever it takes to get the PoA activated and start making smarter decisions for her best care. And "best care" does not mean "only the way I want it, when I want it, where I want it and by the people I want it from". This recipe for disaster is now fully cooked.
Has she ever had a cognitive exam? Does she go to a neurologist who can administer an exam? Or even a PCP. It may require a therapeutic fib to get her there to take one.
If everyone (including the partner) steps back then she can continue to do "everything herself" which will last about 2 minutes. I know that you know your Mom can't have it both ways. It is apparent she cannot be convinced of this with words so now she needs an object lesson. Everyone step back and let her figure out how to "do it herself" without anyone else involved. When she calls, you and family should have a unified answer and clear boundaries for when and how much you will help from that point on. Either she accepts in-home paid aids or she transitions to a great facility. It will most certainly be hard to do this at first, but then a realistic solution will happen and everyone's lives can move on, including your Mom's and her partner.
“Stigma” wasn’t maybe the right choice of words that I used when referring to Assisted Living. What I meant was that Mom has it set in her mind that all AL facilities are bad and “not for her”. Personally, I have heard of many people very much enjoying their life in AL.
I am going to take a break from doing things for her. But will always try to be a loving, caring and thoughtful daughter no matter what. I know that her Parkinson’s disease makes her feel very grumpy and I try to be extra patient with her.
Thank you again to everyone here for all of the support.
“ Stop helping , let them fail , sometimes it’s the only way to get them to accept help from hired caregivers in the home or to accept placement for care “.
Good luck .
She still won't go to such a place, but at least you'll know that you gave her some things to think about, and that she had the chance to go to one of her choice.
All I've ever had to do to activate a LO's MPOA is request the doctor to sign and verify that the time has come that LO can no longer make their own decisions. Your brother should request that now because it's clear that mom isn't making decisions in her best interest.
If no one will help her "do everything herself" - which she isn't doing - and brother has the legal power to place her, you're on the way to placing her. That will be hard because she will resist, and there's no reasoning with her. Then you continue not to help. Then something happens to her. Then she goes someplace of YOUR choosing, not hers.
I'm so sorry you're having this problem, but you're doing the best you can. As for stigma, I see AL folks out and about my community often, and they're having fun. They go out for meals, to parks, to performances, and they have helpers so they can easily get in and out of the AL bus. Gimme some of that stigma when I need an AL!
This is all too common...it's going to take an emergency at 2AM on a rainy night and a trip in the ambulance to the ER, hospitalization for (3) nights and then a discharge finally to a facility.
End of story...I know it's so hard. Everyone wants to remain at home; myself included. But, it's not always feasible safety-wise. It will take an emergency and then the decision will be made for her.
You are in my prayers...
Maybe there is an oppertunity to visit one with your mom? Have a meal nearby or drive up to some of the nicer ones and make her actually see it in person. You are lucky she has money so she can afford to be somewhere nice. Just a thought.
Sorry for all the stress. Anymore, with my mom's inevitable decline, I am starting to figure out what having a teenager will be like. No thanks, all snark but all the stress. Thank you for sharing your heartache.