My dad is 84 with Parkinson's and Dementia. He is incontinent, sometimes mobile (with a walker) but usually not. He is virtually blind. Oh, and he hasn't had any teeth for 3 months because they fell out and the denture process takes forever. Last year, he was in a SNF and in and out of hospitals for 3.5 months with UTIs, a heart condition and COVID. Somehow, he made it back home. My mom is 81. They have known about his Parkinson's condition for 21 years but told my sister and I in 2007. I left my life in NYC and moved to be closer to them. I largely did it because I have always been very close to my dad. I have never felt close to my mom, largely because she abandoned me emotionally to care for her elderly mother when I was a child and teen. Now that I am 47, I see she has suffered from mental illness for her entire life. But with the stress of caregiving, she has really lost it. I suspect she too has dementia. When my dad was released from the hospital, she agreed to a FT live-in caregiver because she did not want my dad to die in a SNF. I had to twist her arm into it. Even though my mom could live her life since a FT caregiver has my dad, she stays home, hobbles around and creates misery for everyone around her. This week, their caregiver needed a 10 day break for a surgery. My mother refused to allow me to get any substitute help - even overnight. They have the money. During this time, she has said things to my dad like, "I wish you'd died last year" and "I hate caring for you." The house is gross. I visit, as I have since 2008, about 2x per week but it is never enough for her and the conversations are always awful. Of course, tragedy struck two days ago. They were robbed in an elderly scam. I am grateful they were not injured. However, after that, I insisted she get overnight help until the caregiver returns. I contacted 4 caregivers I knew of - none had interest because it's a short term gig. I told her she had to get help through an agency and said that if she refused, I would no longer be part of her life, and she would no longer see my daughter. I gave her a 10 am deadline. When I called today, she said, "I'm just going to do it myself for another week." I said, "You understand that I really mean it - I'm not enabling you anymore. You will not see me or my daughter." She said she didn't care. I, of course, feel horrible but I'm also tired of enabling her poor decision making. She is like an addict and her drug of choice is clinging on to independence despite the threat it poses to both of their physical safety, and her mental health. Am I the worst person ever? I'm sure they'll try to break me down. What do I do?
If you can't get your dad removed, maybe you can take your dad on an outing once or twice a week (but with Parkinson's, it can be so hard). Or tell your mom you'll be visiting HIM and him alone X times a week. If you can, visit in a room where you can close the door.
Your mother sounds like a complete nightmare. You can only do what you can, legally. She's willing to lose her daughter and granddaughter just so she can be right. I'd stick to your guns on that and keep her from seeing your daughter, because nothing good comes from your child seeing you abused and bullied.
So very sorry you're in this position. Hang in there.
But unless you have actual PoA documents for MPoA, you are in charge of nothing. Her saying it doesn't make it legal. Not sure if you mean for the both of them or just her?
So, your Dad's care is at the mercy of your Mom (currrently at home with FT caregiver). You've believe your Mom has had an undiagnosed mental illness all along and now don't know if she has veered into dementia. If she now does indeed have dementia then her history of mentally ill behavior is in the past and no longer pertinent to the currernt care crisis because she is no longer in control of her cognitive health and there is no cure for dementia. It won't be helpful to the situation if you continue to engage and respond to her as if she's her prior self. Dementia changes everything. Getting her a diagnosis would be helpful, but from what you've described of her current behaviors, sound pretty likely.
I would get caregivers for your Dad (and if your Mom complains you remind her they are for your DAD, not her, so that he doesn't go into a facility). Or, begin to transition him into a facility. How you do this is another issue. It may require emergency guardianship.
I'm so sorry you must endure this ongoing stress. It will be very hard until permanent solutions are eventually put into play. Learning about dementia will help you also learn better engagement tactics so that dealing with your Mom will be more "productive" and less contentious. Watch some Teepa Snow videos on YouTube, I've found them very helpful.
Also helpful to me:
Rules for engaging our loved ones with dementia:
1) Agree, do not argue
2) Divert, do not attempt to reason
3) Distract, do not shame
4) Reassure, do not lecture
5) Reminisce, do not ask “Do you remember…?”
6) Repeat, do not say “I told you”
7) Do what they can do, don’t say “you can’t”
8) Ask, do not demand
9) Encourage, do not condescend
10) Reinforce, never force
The overall goals should be to:
1) keep them as calm and peaceful as possible
(because they are less and less able to bring themselves to this state on their own)
2) keep them physically protected in their environment and from predatory people
3) keep them nourished with healthy foods that they will accept without fighting or forcing
4) keep them in as good a health condition as is possible, that their financial resources will allow and within their desires as expressed in a Living Will (aka Advance Healthcare Directive)
5) keep them pain-free as possible and within their desires as expressed in a Living Will (aka Advance Healthcare Directive)
The caregiving arrangement needs to work for both the receiver and the giver. If it is onerous to the caregiver, then the arrangement is NOT working. Alternative types of care must be considered to avoid caregiver burnout.
Your Mother has her reasons to refuse help. Reasons I've heard (from those willing to admit) or witnessed include;
- fear of strangers/increased anxiety over strangers in the house
- fear of losing independence/fear over loss of control
- pride
- denial of situation
- rigid thinking / unable to accept change easily
- anger - not wanting life to change
The way to stay home *as long as possible* (Note: not stay home FOREVER) is to *accept help*.
Unfortunately being rigid/stubborn & refusing help may prevent them staying at home - the very thing they want.
It seems that as your Mother is refusing help this will speed up the chance of crises. But with Dad starting the hospital-rehab-home circuit it may be coming anyway 😔
If you are listed as emergency contact, then you can help in the coming crises. Not to swoop in & enable.. but as an ADVOCATE. To alert professionals. Eg inform their Doctor, Hospital In-Charge & hospital Social Worker that Mom has a history of refusal of home care services, which makes Dad a vulnerable elder. By communicating this it may re-route his next discharge direction.
The goal may still be *home as long as possible*. Hopefully someone will get the message through to Mom that it comes down to A. Accept help or B. Be moved into care.
A POA in not in effect until the person either says "I want you to manage things" or they are not capable of making the decisions either for health or finances the financial POA would become effective.
If APS says "can't you be more involved" the answer is you have tried and all the involvement is not effective and it is effecting your health and you can no longer safely care for either of them.
She should not be caring for your dad. She needs help whether she likes it or not. Or your poor dad needs to be moved to a facility that can properly and sanely care for him.
Since your mom may have dementia and/or mental issues, she may not really be able to make these very important decisions herself.
So, I hate to say this, but you may want to step back in, for your dad's sake and get things straightened out for HIM. And even though she's impossible, if she has dementia, well, she just can't be expected to behave properly.
Do you have POA? If so, look into getting it activated ASAP. They need help.
So sorry. Best of luck. Take lots and lots of deeeep breaths!
Your State has an Elder Abuse hotline number you can call that or most Local Senior Service Centers have a Social Worker that you would be able to talk to and they would be mandated to report anything that they felt was unsafe.
Have you considered seeking an evaluation for Hospice? Mom would get more help, you would know that there is a Nurse that would visit at least 1 time a week, a CNA would come at least 2 times a week to bathe dad and order supplies. And they would get supplies and equipment delivered.
Possibly when you do stay away, she will see you weren’t playing.
But yeah, Dad needs to be outta there.
I don't have a lot of advice, because I didn't have to deal with anything like you are, but I do think you need to have a realistic plan in place before issuing ultimatums you probably can't keep.
Do you have power of attorney for them? If so, your mom sound nutty enough that you might be able to activate it. If not, then you could call the local police for a welfare check so your dad will at least get some help. If Mom's competent, then she gets to stay home, but Dad will be taken where he's cared for.
She should not be caring for your dad. She needs help whether she likes it or not. Or your poor dad needs to be moved to a facility that can properly and sanely care for him.
Since your mom may have dementia and/or mental issues, she may not really be able to make these very important decisions herself.
So, I hate to say this, but you may want to step back in, for your dad's sake and get things straightened out for HIM. And even though she's impossible, if she has dementia, well, she just can't be expected to behave properly.
Do you have POA? If so, look into getting it activated ASAP. They need help.
So sorry. Best of luck. Take lots and lots of deeeep breaths!