Caregiving for parents unable or unwilling to care for themselves. Any advice?

Groovygal, because dementia causes loss of executive function she may be willing but, doesn't remember the necessary steps to achieve the end result.

Dementia is so awful for everyone and it takes lots of learning to figure out how to get to the end result. Then, when you think you have if figured out, bam, they have slipped and now you need to find a new way of getting there.

My dad never openly admitted having a problem, called me vile names because the Dr diagnosed dementia and it didn't help one thing knowing what was going on. I wouldn't push for a diagnosis, it doesn't change anything for any of you. Just make sure you have POAs in place so you can advocate when needed.


I would think she is terribly frightened, knows something but, not what is going on and she can't process information effectively anymore, on top of not being able to put 2 steps together for activities of daily living.

Learning to give everyone grace during this difficult time is so important, for all of you. Letting go of our foibles and moving forward is the only way to get through dementia, IMHO.

They are very blessed to have you. Congratulations on finding a way to live with and through your struggles. May God give you strength, wisdom and guidance!

Update.

I want to add some thoughts, here, that probably won't resonate with some of the people who were kind enough to share their own thoughts in response to my post. But for what they are worth:

I come from a family with a very strong genetic history of severe mental illness, on both sides. We are charming, funny, intelligent, hard working and have big hearts. We also -- many of us -- struggle mightily to survive most years. I struggle with it but was lucky enough to come of age during an era when talking about it and seeking help were socially acceptable, and I availed myself of that. My parents struggle with it and feel horrendous shame and an instinctive, self-protective need to get through the crisis and pretend it never happened. While both of them now take anti-depressants, neither of them has ever been willing to seek professional help for themselves. That, in spite of the fact that they actually attended MHMR classes to help my brother when he ended up hospitalized for weeks around the time he turned 30 and was first diagnosed.

I have been so much luckier than many in my family. At least two relatives have committed suicide, including my Dad's sister. I attempted it when severe mental illness hit me 25 years ago, and I'm thankful I survived. I was very ill for about 4 years before I was able to get my feet underneath me -- but never so ill that I was unemployed or unable to move forward in my career because this all happened during a time when technology and the economy were absolutely booming. When it hit my parents, we were in the midst of an energy crisis and recession that didn't really abate until I was grown. They were never able to achieve the financial footing I have. That's likely in large part because I never had children. But the luck of the draw where era is concerned had even more to do with it.

All that to say that in learning to live with myself I also learned how much I love my parents -- and I developed a deep sense of empathy for their situation. I cannot love myself and hate or blame them for my own troubles. We are too much alike, and there but for the grace of God go I. They have suffered more than most people I know. They have continued to develop their ability to love despite what could have been an intense desire to blame others for the hardships they have faced in life (something I have never seen them do).

However, along with mental illness has come the all too common physical illnesses that go hand in hand with it. We have been a sickly family. My brother died at 37 because of this, and at 56 I have the constitution of a 75 year old. My Dad has had multiple life-threatening crises over the past 25 years, from an incredibly rare and deadly autoimmune disorder that destroyed his kidneys to the heart disease that led to today's CHF. From a brainstem glioma that turned out to be indolent to an agressive prostate cancer that was cured through what can only be described as the most barbaric of radiation therapies. He has never complained. He has simply survived.

My mother has early dementia and we've known that for years. I have avoided seeing them in person as much as I can because the emotions can throw me into crisis myself. But I love them and I want to do the very best for and by them.

Life has been hard for all of us. I would like the end, as it comes, to be as filled with love as it can be. Having days like a couple of days ago... I think I have to accept they will happen.

Now is the time for me to muster every single bit of human compassion, patience, and family love I have can find. They need it. I do too.

I suspect many of us feel the same, some days.

Thank you for all the support. Honestly. I very much needed the ideas and sharing of experience.

In my experience when you stop offering and doing, resolutions happen quickly. Atleast this was my experience with my MIL. Once I stopped doing everything for her and her son (my DH) she all of the sudden has a plan in place and it doesn’t involve me because I basically told her I’m done and meant it. If she calls me and asks me to do something, I say no. She eventually stopped calling me and asking me to do stuff. It’s wonderful and peaceful, though she still calls me to ***** about how much pain she’s in and other people. I give her a 3 to 7 minute limit before I abruptly end the call.

The little boy cried wolf one too many times……

Youre enabling them.

Groovygal - We’ve done the same. We moved my parents into a property we own. They do pay rent. Part of the process that helped us be more comfortable with the arrangement is that I am financial and healthcare POA. That way, there wasn’t an opportunity for anyone not to pay rent or utilities and since I’m often the one on call for healthcare issues, I’m not held in the dark for those decisions. The move alone was one of the most stressful times of my life. Getting them settled with new doctors is next on that list. I wouldn’t have been able to stay sane (relatively) without having those legal documents in place. For now, they don’t need me making too many decisions for them and their bills are set up on their bank’s BillPay system but I can keep an eye on things. That would be my biggest suggestion. See an elder care lawyer and get their paperwork in order so that someone can steer the ship if they are unable. In broaching that subject with them, I tried to explain that the paperwork would protect the spouse if one should become ill or pass away. I really hope this helps. I know how exhausting this can be and I’m not even the primary caregiver.

Adding when your parents pass you are not responsible to pay any of their credit card or medical debt. So please don't. Let them rack up as much on their cards as they want. With no assets they are effectively judgement proof. Heck let them put the mefical debt on credit cards. Once they are maxxed out the party on spending is over.

I think I missed where your folks currently are?

Dad in care (temporarily?) & Mom in her own home?

You changed this entire post, so our replies kind of don't make sense now!

Anyway, I knew my mother had dementia 100% so when I took her to the ER for vertigo for the 5th time, I begged the doctor to admit her to test for dementia and to also test further for why she was constantly having vertigo. He agreed, thankfully, and she was tested for dementia. She failed the MoCA or SLUMS test, I forget which she was given, and scored an 18 which indicated she was suffering from progressive dementia. That was an accurate assessment, too; she wound up having to go into Memory Care AL (from regular Assisted Living) 3 years later.

My brother & I had to sit back and wait for something to happen to our mother, it did and we moved her into AL, 10 years of her lying to us and fighting us!

Guess what? She loves it, and now says she wished she had done it 10 years ago...groan!

Might be what you should do, we just let it evolve, we did not cater to her, we let her figure things out on her own, the longer you compensate the longer this will go on.

It sounds to me like your mother and mine could be sisters. I am treated exactly the same way.My mother too pulls the act that she behaves as she does because of how I treat her. I do not mistreat her. I just refuse to play her games. She is very needy and gets hysterical over nothing several times a day. She knows that I will completely and utterly abandon at the drop of a hat if she dares to cross me. The needier she gets the greater her ability to keep her instigating and BS in check with me.

Do not walk on eggshells around your mother and don't mention cognitive testing again because that will only lead to WWIII. Let her know that when she starts up with the instigating, gaslighting, and tantrums that you will walk away and will do absolutely nothing for her. Then leave.
Your parents (like my mother) have never had to grow up and become adults. They are elderly children and in desperate need of some serious tough love.
If they disrespect you, do not help them. Do not take their calls. Do not pay their rent again. They would pay yours if you needed them to. Keep that in mind and for the love of God no more monthly allowance from you. Are they children who get an allowance mom and dad because they get good grades and do their chores?
It might be in their best interests as well as your own to allow them to become wards of the state. There's no assets or potential inheritance for you to try to protect. This is often the reason why adult children (even abused ones like us) take on caregiving for needy and elderly parents. Or we do it out of some misplaces, misguided sense of guilt. Call APS and have them visit their home and see how they live. Let the responsibility for them be off of you. The state will place them. If they're living in filth and squalor, then that's what will be best and safest for them.
I will have to continue caregiving and keeping my mother out of a nursing home until next year. That is when this property becomes a Medicaid-exempt asset. Much like your parents, my mother was bad with money and would have lost this property had I not moved back and bailed her out. So, I have to trick around for a while.
You don't. Your parents' inability to become adults is not your fault and you cannot fix them. Let APS take it from here. Good luck.

Save yourself. Call APS. Let them take over care.

It's always okay to vent here, to a forum of people who, for the most part, understand what you're saying & what you're going through. My question is why? Why are you sacrificing your health & your emotional wellbeing for your mother who is continuing to treat you like garbage? You can't care more about her than she does about herself. If you empty out her hoard, she'll just fill it up again. If you wash 15 loads of laundry, she'll just create another 20 loads of laundry for you to do, same with the dishes, same with animal waste & living in filth. Yes, she may have dementia (or mental health issues at the very least) b/c nobody in their right mind acts like this or lives like this. But you need to realize that you can't 'fix' it.

What you can do is perhaps get your dad into Skilled Nursing for care and away from your mother who is incapable of caring for herself, never mind for your dad. If he is approaching the end of his life, then he deserves to be properly cared for and to have hospice on board for comfort care in a clean and safe environment. I think that's his best bet, don't you? Speak to the social worker at the SNF he's at now for short term rehab & see if he can stay there for long term care. You may have to apply for Medicaid on his behalf to cover the cost; see what the SW has to say on that matter.

After dad passes, you can see about getting mom into long term care also. If she refuses, you can put in a call to APS and let them handle the matter for you. If they feel she's suffering from dementia and the house is unsafe for her to live in, then THEY will step in and remove her and place her in managed care.

This is really a lot for you to handle alone, and my heart goes out to you. You want to do the right thing and are facing defiance at every turn. I wish you the best of luck with all of this.