How to explain

bozowing

My sister and me have both filed for my dad's guardianship.  I am my dad's primary caregiver and go to his house almost daily while sister may show up at best once a week and for an hour.

My issues are my dad repeatedly complains he's not mobile and needs a car.  Without going into the Big story, his doctor signed paperwork to pull his license and he is unsafe to be on the road.  That is first problem, explaining why he no longer can drive.  I tried, but it always becomes loud argument and him accusing me of holding him down.  I take my dad to go out get at least one hot meal a day, groceries, doctors, errands, etc., but he hates not being able to do it himself.

I tried to talk with my dad about upcoming deposition and court hearing that if doesn't want my sister to be his guardian he has to tell the judge.  He then says he doesn't want to puck sides between my sister and me, but can not stand sister's husband at all.  He then goes on to say there is nothing wrong, he is fine, he don't need a guardian.

He was diagnosed with dementia, has incontinence, forgets easily, and I feel should no longer be in home by himself.  I Social Worker and State Adult Protective Service employee both rate my dad incompetent along with his doctor who wrote a letter stating so.  I just don't have the heart to tell him he has dementia, nor think he will accept it.  He's super stubborn old European from Hungary.

Any advice to help?

DawnOfANewDay

He won't understand.  He has dementia.  

You just need to do whatever you have to to keep him safe and healthy.

Emily 123

You are correct to not waste time trying to tell your dad he has dementia--he won't have the capacity to see it or remember, and telling him that over and over serves no purpose. He thinks he's fine. Let it go and work around it.   A good call on your part that he needs more help.

https://www.agingcare.com/topics/295/anosognosia

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

 Try a fiblet first:  The car is in the shop.  If it's still physically at his place, can you move it somewhere out of sight?  Sometimes people take away all the keys, but this is a huge trigger that reminds of the loss every time they look for their keys (for men who are used to carrying their keys in their pockets it's a constant reminder), and it makes them angry (of course).  He can have a car key on his key ring, but it shouldn't be one that works in his car.  

If just a fiblet doesn't work:   Examine your interactions that lead to the car argument and change that dynamic.  Right now he's being reminded every day that he isn't driving, and having an emotional argument with you.  He may not remember the daily argument, but he'll remember the negative upsetting emotion.

If the trigger to realizing that he can't drive is going out with you in a car,  back off on the excursions--maybe pick something up for lunch and bring it in, (same with groceries, etc) then go for a walk to get him out of the house.  There are threads on here about how the loved one's needs change with dementia, and while we want them to participate and get a lot of outside stimulation, this isn't necessarily what they need. For instance, I notice with my mom that she doesn't want to go to stores or shop--having lunch with me is about all she can handle of the world outside her AL.  Other than coming over to my place for an afternoon or going out to lunch she wants to be in her familiar place. She'll tell me reasons why she doesn't want to do things if asked--she doesn't 'see' her reluctance to engage in all the daily things that used to be so easy for her.  It is a complete about-face from what we think of as 'healthy'.  Surely more mental stimulation and more choices about how to fill our days is better, right?  But not for a person whose brain is struggling to process even one thing at a time...

Cynbar

Don't try to explain, he's not going to get it. His brain is broken, that's what dementia does, he has lost the ability to process a reasonable explanation. Avoid telling him he has dementia, it will only upset and frustrate him and he's never going to understand it. Instead, try to deflect and redirect. When he complains about not driving, tell him he can discuss it with the doctor at his next visit, or his car isn't running --- something like that. And I'd stop discussing the court case with him, he won't remember it and it will anger him in the moment. You'll just have to hope for the best regarding what he says to the judge, prepping him likely won't work. The rules have changed, it's a big adjustment that all of us caregivers go through.

DeniseMc

I am just wondering how long does it take to adjust. My father was diagnosed with moderate-to-severe Alzheimer's in May. I asked the Neurologist "what happened to dementia, I thought that happens first"? His reply was my father faked it to make it. My dad moved in with myself and my husband very quickly after that. We sold his car and converted one of my spare room into a daddy suite. I work from work as a Fleet manager 60 plus hours per week and weekends. I have applied for the benefits that he qualifies for and am still waiting 4 weeks now. My husband and I hired a caregiver for 3 days per week and that does help some but not the  medical needs. Medical help is what I need to most. My cousin is a Nurse and I have had several Video calls with her to learn how to give him his shots, meds etc. I lost my only brother in May 2018 from TTP and my mom passed Jan 2019 of heart failure. I am the POA and make all the decisions for him. I am still adjusting to days that he can't talk and the days that he is quite hateful. I know that's not my dad that's this disease. The are some days I just take a shower in the middle of the afternoon so I can cry without him seeing me. 

Any words of wisdom would be greatly welcomed. 

Thank you 

Rescue mom

Denise—welcome, but sorry you have to be here. You will get more and better help with your question(s) if you start your own thread, with your own question. Now you are kind of “hidden” down in a thread about other things, so people may not see yours.

It’s easy, at the top of the topics, you will see a green box that says “add topic.” Click on that, then you can make your own thread with your issues.

I cannot help much, except I know it’s hard, and a lot of us cry in the shower. My DH is mid-, or late mid-stage Alzheimer’s. At least he’s usually compliant. At some point—and I know some would say it better—you just accept it, or get used to it, or grow a thick skin. I truly don’t know how you can work and continue to provide the kind of care he will need, probably soon.

But just from reading here (we have not needed it) I thought you could hire medical aides who will come and do those things you mentioned, beyond the daily “regular” caregiving…Does your daily caregiver not do meds? I thought most did, or at least those hired for dementia patients. Shots are usually different, though.

Also, have you thought about hospice? Many/most hospices will take dementia patients even though death is not expected. That old “six months to live” rule doesn’t apply with dementia beyond a certain level. The hospice would provide people who do the medical things you mention. They will also come visit and assess/decide if he qualifies, no doctors permission needed for those assessments. 

Others will have more and better advice if they see your question. Also, sometimes it can take a couple days to get responses. Good luck.

Stuck in the middle

Denise, you never stop adjusting as long as you are a caretaker for a person with AD.  Your father will keep changing as his disease progresses, and you will have to keep adjusting.  It is a little like rolling down a staircase; you get used to one step, and wake up one morning to find yourself a step lower with fresh bruises.  

AD is a progressive, fatal disease.  At some point in the fairly near future, your father will require more care than you can provide while working full time.  It is not too soon to start looking for a memory care placement.

Welcome to the group.  You will reach more of us if you start your own conversation by clicking on the green "add topic" button near the top of the screen.

Iris L.

bozowing wrote:

  He then goes on to say there is nothing wrong, he is fine, he don't need a guardian.

This is anosognosia, a characteristic of dementia.  PWDs (people with dementia) truly believe they are fine and resist all attempts to tell them otherwise.  Please read about anosognosia, it will help you to understand why he says what he says.

  I just don't have the heart to tell him he has dementia, nor think he will accept it.  He's super stubborn old European from Hungary.

Any advice to help?

Anosognosia has nothing to do with being from Hungary, it is due to brain damage.  Don't say any more to him about dementia.  Learn the work-arounds that the other members use.  They know the most and will help you!  Best wishes!

Iris L.

DeniseMc

Thank you

mommyandme (m&m)

Bozowing,

When my mother asked why she was having these weird memory, cognitive problems, I asked her if she knew what dementia/alzheimers was. She’s an RN after all and actually got herself diagnosed. Her answer was “no”… end of discussion.  I just reassured her that she’ll be ok and I’m there.  We’ve never discussed her diagnosis again.

As far as help in home being needed and her inability to operate her vehicle any longer, I just said many times over that it’s her turn to be pampered, waited on and driven around.  She now gets to just relax and enjoy the scenery.  She seemed to finally lean into it and surrender. Or… she just forgot.  

So sorry for the troubles and pain. 

JoyP

Having a problem with my Mom not wanting/understanding why she needs a caregiver. She thinks she is capable of being by herself. How do I respond to her when she argues with me that she doesn’t need anyone and she is fine on her own?

SusanB-dil

Bozowing - also sorry you need to be here, but yet, here we are - in this insidious thing together!  I also learned about the anosognosia first from 'Iris'.  and to both you and JoyP - just don't argue (yes, sometimes easy to get 'pulled' into that).  It will only get everyone more aggravated.   In our case, we pulled MIL off the road several years ago, but she still wishes to drive.  The biggest issue with her now is that she still doesn't see why she can't be left alone. She "knows" she is "just FINE thank you very much!!"
We do not argue. At first, we kind of used to, even though it was more a reminder that "your doctor said you cannot".
What works for us now - is that we do 'remind' her that she is a fall risk and we don't want her to fall and be hurt.  Sometimes she will want to argue, and we tell her she is welcome to call her doctor. "you are welcome to talk to your doctor about that, would you like me to look up the number for you"  - it deflects it off of us and back to the doctor.    It gives her pause, usually just long enough to forget that she wanted to bring up the issue about being left alone. again.   Sometimes she will say "well, those doctors don't really know me!!"  so we ask again, if she would like to speak to her doctor.