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Gnarley Asked September 2020

Why didn't you tell me?

This is madness! I tell my mom what's necessary, I share with her, she made or makes decisions and then doesn't remember why. She changes her mind about decisions made months ago. I don't need and shouldn't tell her everything regarding my dad and their situation. I'm having trouble deflecting or redirecting her and we constantly argue.


This is affecting my mental health and marriage!


My parents are in their early 90’s, my dad had a stroke almost 2 years ago. I’ve tirelessly helped them since then. My dad, mom’s POA can’t make decisions for her, he has Dementia w\Alzheimers. Mom has no advanced HCD and I’ve been asking her to get this done since my dad’s stroke.


Two months ago we moved my dad into a care home, it’s been hard. He’s been in and out of the hospital and then to another care home with wake staff, finally, he seems to be doing better and mom is alone.


I wasn’t working when this began and because of their constant needs (Sundowning), it’s made finding a new job nearly impossible. Finding employment matching my skillset is in itself a full-time job and I can’t do both! I decided to give up on the employment efforts for a while to help them. I’ll never recoup what I may have earned if I had been able to solely focus on getting a job and working and doing so my parent's needs would have suffered. I have been dipping into my emergency fund to pay bills and this won’t last forever.


Early in the year, about 8 months ago my parents gave me my dad's car and signed the title over to me for helping them since he couldn’t drive it. It’s taken months to sell. Now my mom has forgotten why they gave me the car and wants the proceeds of the sale that I’m using to pay my bills. This has resulted in verbal fights and threats to sue me. I said fine do it and don’t forget I’m still working on the VA’s Aid and Attendance Benefits that will pay much more than the car was worth.


I just want to walk away from this toxic situation, sell my home, and move away! I’m having trouble rationalizing her dementia problems, yet it evokes anger and then my wife gets upset for talking to my mom and not breaking the cycle.


How do you deal with this?

disgustedtoo Sep 2020
Gnarley;
If any of this you already know, just ignore it - some of this is for those who doesn't really understand POAs and/or guardianship.

"It's going to be hard"
The whole process and condition are certainly hard. MORE than hard! If you can get placement, it will become easier - not 100%, but certainly easier!

I think your biggest problem is you want to be honest with your parents and discuss what needs to be done, but dementia, as it gets worse, thwarts those attempts. You don't have to be dishonest - either some fibs, bending the truth or don't discuss whatever it is. You have to make the decisions now and anything you do get agreement on is fleeting - 2 days, 2 hours, sometimes even 2 minutes and that discussion is gone, never happened. You can't always explain or get agreement from a toddler, and this is in the same ballpark. Worse than a toddler, you have to put yourself in her reality and deal with her on her level. Agree a lot, even with nonsense. Don't ask for decisions, make statements if something must be said or done. Reasoning, arguing, correcting, all are for nothing other than your own frustration and her anger. Throw those out!

"... and I really don't want to become the guardian."
Just to be sure, you do know that being guardian doesn't mean you have to be the one providing care, right? If so, then disregard this. Some do think that's what it means. It is a few steps above POA, which also, despite what some think, doesn't mean you provide the care. For anyone - these are both methods for allowing you to oversee a person's care and finances, etc., but guardianship gives you more control over where they live, etc. POA doesn't.

"I'm really thinking maybe the best thing is to get a court appointed conservator due to the stress I expect."
This is acceptable (to most of us - there are those who will spew, but ignore them!) if that's how you feel. Just understand that if you go this route, you have no say as to where she lives, medical care including medications, or what becomes of any of her assets. If she has no assets, no loss there. Whatever income she does have would go to offset the cost of a facility in all cases.

In any/all cases, you can still visit if you want, or maintain some other form of contact. HOWEVER, I would recommend taking a break, wait a few weeks before attempting any visit. Give her time to adjust and give yourself time to restore some sanity!

I only suggested guardianship because she may be beyond capability for signing POA or refuse to sign. Guardianship, being a step above, DOES allow you to determine where she will live and move her. POA allows you to sign for a facility and pay for it, but doesn't allow you to force her to move.

We were told we couldn't force mom to move when it became unsafe for her to remain in her own place. Our POAs had been set up long before, but she refused to consider moving anywhere and POA isn't enough (per EC atty.)

Even now, after 3.5+ years in MC, today they called because EMS came and she refused to go to the hospital. Despite dementia, they cannot take her if she says no. It isn't clear what they thought I could do - sure, I can say take her, but if she still says no, her word stays! I gave okay to take her IF they could get her to agree, but no to hospitalization. Given age and condition, it would not be good to do this. I got agreement from YB too. She still refused to go, so that was that. Suspect this was a TIA, as the symptoms did get better not too long after. She still has weakness on the right side, but the other signs faded. She just turned 97, and will likely experience more TIAs or a stroke at some point. She's had a good long run, I see no point to disrupting her with all that hospitals do!

Hope you can find some resolution soon.

lealonnie1 Sep 2020
The discombobulation and general forgetfulness associated with dementia/Alz makes having a real relationship or even a conversation nearly impossible, frankly. After a 'conversation' with my 93.5 y/o demented mother, my head is swimming. She aggravates the living hell out me, as much as I hate to say that, because a lot of what she does she cannot help. It's the dementia that makes her act the way she does, and partly her passive-aggressive narcissistic personality added into the stew pot, which makes for a HORRIBLE situation all the way around. She lives in a Memory Care ALF and I'd have it NO other way. Because, if she had to live with me, I'd shoot myself and figure I got off easier than having to deal with her 24/7.

If I were in your shoes, I'd place your mother in a Memory Care ALF or with your father wherever he's living at the moment. Then you can become the son again and visit on YOUR terms as YOU see fit. When the conversation degenerates into word salad, well, then it's time to say Goodnight. The in-person visits are limited now with the plague that's upon us, so I'm restricted to a 20 minute window visit with my mother which is just about right. Right when I feel ready to rip my hair out, it's time to leave! Small doses, is the key phrase here. And giving up the notion of trying to make sense out of anything or trying to get your mother to remember past agreements or stop asking you for the proceeds from a car that was purposely given to you as a gift. You're expecting the impossible, so stop doing that. This is why limited visits on YOUR terms is all that can be expected and achieved with this level of dementia present.

Otherwise, YOU go crazy. And YOU go find a log cabin off the grid somewhere and check out of society. Not worth it. Especially not for something that she can't really help to begin with. Nobody 'wants' dementia or asks to be burdened down with it. And we're ALL burdened down with it once it affects ONE family member. It infiltrates the whole family, unfortunately, and wreaks havoc everywhere.

Please look into placement for your mom and education for your wife on the disease your mother is suffering from. You can't 'break a cycle' with her that she has no knowledge is even HAPPENING. It's not like punishing a naughty child or giving him time out so he'll remember to toe the line the next time. Your mother won't remember anything, so it's useless to try to get her to. Take care of YOU! That's the real goal here. And getting her placed where she can get care by a team of people 24/7. It's a win-win for all.

GOOD LUCK!!!

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ZippyZee Sep 2020
If it's negatively effecting your health, finances, or relationship it's time to place Mom. If she refuses, back off, wait for a week or so, then call APS.
Gnarley Sep 2020
I'm actually taking a break from this! After a similar argument 3 weeks ago I said that's it, time to figure out a way out of this situation. I'm heading to Oregon for 2 weeks to investigate where to go to consider a new life. This is only an exploratory trip but it will give me a break! I haven't told any of my family and I'll go visit my dad before I leave.

I won't call family while I'm away or take any phone calls. I'll listen to messages and if required and an emergency I'd call. The care home can reach me and I will ensure my dad is okay but I think my mom needs to fail on her own.
disgustedtoo Sep 2020
The only two bits of advice I can think of is:

1) do NOT count on your siblings for help, just forget they exist
2) do NOT try to reason or argue with or correct your mother

Siblings are NOTORIOUS for disappearing into the woodwork when there is any caring to be done. The same siblings magically reappear if there are any assets to inherit! I have 2 brothers and got very little help when preparing for the move to facility, clearing out her place, fixing it, selling it, etc. Since then, I have written one out of my life, for good. The other I still need for eye appts mom has 4x/yr - that's ALL he has to do, but he's been trying to get out of it! It is outside the normal transport area, so no help there. Otherwise, I consider myself now an only child!

You can't reason or argue with dementia, nor can you correct it. She will believe what she believes. Either agree with her "reality" or at least remain mute. It isn't easy, but it should alleviate some of your stress if you can avoid trying to change her mind. It won't happen. No matter what you say or how many times you try, this is what's in her head. You could try fibs, such as saying dad sold the car years ago, or dad totaled the car and hasn't replaced it, but she's not likely to buy it - try it once and then drop that if she doesn't believe you.

Since your mother already has dementia, the question will be is she considered capable of signing any kind of document (health care, POA, etc.) Even if she is deemed capable enough (our mother was in early stage, the EC atty took her aside and talked with her, asking questions and deemed her okay to sign the updates we needed), she may not be willing to sign anything.

The only option left if she isn't capable or refuses is guardianship. If that is granted, you can determine where she lives and take over everything.
Gnarley Sep 2020
It's going to be hard and I really don't want to become the guardian. I'm really thinking maybe the best thing is to get a court appointed conservator due to the stress I expect.
Sendhelp Sep 2020
Gnarley,
Your wife's expectations are important in this mix.
What are her expectations?
You said: "then my wife gets upset for talking to my mom and not breaking the cycle."

How did your wife come to expect that you would no longer be talking to your Mom? Is that even possible? Did you say you would? Any agreement there?

My husband agreed to not bring me into his mother's demands, needs, panic, and chaos. He talks to her. He has occasionally slipped, and actually brings the open phone line to me, saying his Mom has a question. It has cost me a lot of time, and money we did not have. She had the money, but did not trust anyone to have her password or pin number. After about two weeks, she was able to learn to order things online, even groceries delivered. Boundaries are so hard! It is enough that I am taking care of my husband.

Can you ease your wife's distress by NOT sharing Mom's problems?

Sendhelp Sep 2020
Gnarley is 61.
Parents are 91 and 92.

elaine1962 Sep 2020
OMG, your father is only 61 years old??? Most of us on here as caregivers are at least 61. Your parents could easily live another 40 years. Get out from the madness and get a job and take care of your wife. Both parents need to be in a facility if they can’t take care of themselves!! I’m confused. Your profile says your father is 61 and then your post says your parents are in their 90’s. Irregardless, my advice is still the same. Take care of your wife, NOT your mother.
Rainmom Sep 2020
Not sure where the error is - bio says dad is 61 but the post says early 90’s...
elaine1962 Sep 2020
Get out from the madness and put them BOTH in a facility. You need to get a job and take care of your own family. Your wife comes first, NOT your mother.

NYDaughterInLaw Sep 2020
Clearly, asking your mother to do a HCD isn't resulting in her doing one. You need to learn to stop asking and start telling. Learn to say something like "Mom, I've made an appointment with a family/elder law attorney to get your important paperwork done. I can't continue to help you if I don't have the legal authority to do so. The appointment is at 10 am. I'll be by at 8 am to pick you up."

And she needs to pay for the consult with the attorney, not you.

Your first priority is to your wife, not your mother. You have to find gainful employment. You are risking the future of your marriage and your own financial wellbeing on your parents, who have lived their lives.

Caregiving needs to work for everyone involved. Your situation is not working. Only you can change it.

BarbieAnkles55 Sep 2020
I am full time care giver in much the same situation! I'm crazy with the emotional ups and downs. Both my parents have dementia and heart problems. Mom experienced a stroke this week and now we are dealing with Sundowners. If I had a choice I would run and hide, but I am the responsible child and everything has been left to me to handle. My husband quit his job to help me and I am not able to work anymore due to the time needed to care for the folks. I have their POA and manage all the finances. I pay myself for their care giving. My advice to you is to stop and think rationally and not emotionally about your situation. Make notes as you do this to help clarify your problem and solutions. Put yourself and your wife's needs first, find someone who could help you with their care, keep your money separate, and walk away from the explanations and arguments with them. My parents don't remember what and why things have been done, so I keep the all the management decisions to myself and then just manage their living so they can be worry free and happy every day. They are in their own home and I am doing all I can to let them age in place. I've had to put my life on hold and I'm not happy about it, but this is the decision I made and I am going to make the best of each day. (Of course that doesn't mean I don't scream into a pillow some nights.)
Gnarley Sep 2020
Wow, seems very similar! I wish you well!
Mepowers Sep 2020
I agree with what AlvaDeer has said. I am in a similar situation. It’s crazy making for sure. I stepped up to help (my mother was abusive and we were estranged) after my mother was found in a bad situation. The accusations, abusive language and phone calls, threats, and so on are endless. If I had it to do over, I would have let the state take over guardianship. You need to set firm boundaries and take care of yourself first. Call APS and let them handle the situation. Hire a company to finish the aid and attendance benefit. And don’t accept anymore assets from her - it can only come back to bite you. And redirecting and distracting doesn’t work with all dementia patients.
MichaelEzekiel Sep 2020
Any way that you can do what you're advising? Sounds as if you're miserable, too.... I'm so sorry; hard when you're trying to do the right thing. My own mom and I have a delicate balancing act; thank the Lord, she has a lot of helpers....
AlvaDeer Sep 2020
Personally I would not be able to do this. If I felt my Mom was at risk I would report her to APS as an at risk senior. Let them take care of the situation. They will likely be on the phone BEGGING you to take emergency guardianship, which they will walk you through. For myself, the State could take guardianship. I wouldn't sacrifice my life to this constant drama. As you said, it is toxic and is poisoning your life. WHATEVER YOU DO do not put in your own money on ANYTHING whatsoever. That is YOUR money for when you and your wife need it. I know my limitations. This would already be way over my lines. You do not say if your mother does or does not have dementia. It does sound as though both your Mom and your Dad need placement for their own safety; you have a family and cannot take this on. IMHO. It is difficult enough when you are acting in behalf of a wonderful and quite with-it senior; I know, having just done it for a year. In these circumstances it is utterly impossible it seems to me.
Gnarley Sep 2020
Thanks, I couldn't imagine how I could have worked and cared for them at the same time! It seemed the right thing to do was care for them since I had enough emergency funds to keep me going for a while, then a while became longer! I have not used my own money and every cent I used is trackable on their credit card. When they gave me the car I felt a breath of relief, knowing I had more time to get my feet back under me. Now that my dad's in a care home I need to refocus and get back to work and with COVID and where I live with late summer fires this seems to add another level of complexity to my problems. Moving seems the best thing to do for me. Dad is safe, mom is on the edge! Everyone says I don't know how you are dealing with it and at times it seems I'm ok and then after bouts of arguments with my mom the only thing I want to do is make sure she's safe and leave!

I have 2 sisters who don't help much. the oldest has a diagnosed mental illness, she's bi-polar. The other lives about 45 minutes away and has anger problems and was reported to APS about 9 months ago. My mom forgets most of the last 20+ months have fallen on my shoulders and what I have done. I've told my sisters now that dad's in a good place it's your turn to step up, I'm DONE with it! I have to step away for my own good and my marriage, but that will take about 6-7 months to be ready to list my home in the spring.

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