When to be assertive: When do we try to... - PSP Association

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When to be assertive

Cocodunny
Cocodunny

When do we try to intervene in loved ones lives? When is a parent no longer capable of caring for themself? When they crawl to the bathroom in the middle of the night because they can’t walk? Then do we insist on round the clock care? And how do we get them to accept it? Legal competence vs. safety, health and well being. At wits end trying to allow independence, but know that life could be made better.

17 Replies
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At this point a long talk with the parent is needed. If you're in the USA there are various agencies that deal with these issues. You didn't state if the parent is suffering from PSP or CBD, maybe another of the related diseases.

Ron

Hi Ron and thank you for the reply. It is PSP.

Dear Coco,

I'm in Canada, not the US, but I think there must be some kind of community health board or agency in your part of Florida, to which you would have access to ask for an assessment of your mom. You've asked many questions and the best thing is to start with the "easy" part which is getting an independent professional assessment of her competence. Community health professionals have scales and standards and quizzes (for you) and all sorts of "tools" to help them assess whether an adult is capable of safe living on their own, or with moderate supports. Of course, if they aren't, there's a whole to of other things that come into play, as your questions predict.

It is always always a very hard thing to do with parents. No one - no matter how compromised, how ill, wants to give up his/her independence! It will be a hard struggle no matter how you approach it! Prepare yourself now, however, to set some "limits" respecting your involvement: Example: My Dad wouldn't accept certain home supports, residential care etc, but kept falling into crisis and when he did, he automatically phoned my sister to come rescue him. Eventually my sister told him "I'm in a new job (...fabricated..) and I can't answer the phone during work time which is 12 hour shifts - so what are you going to do when there's a crisis?"

It is brutally hard to go the roller coaster until the parent accepts some kind of help - but ultimately you have to decide what YOU will - and won't - do during the journey. Do you "enable" them, repeating constant patterns of crisis-rescue-repeat ? or ...??? What feels right to you?

With deep compassion, I wish you the very best of luck with this challenging time

XXX Anne G,

Thank You Anne. In this case we have a partner that enables her. Then calls us when in crisis. But he is terrified of her wrath and hides this contact with us from her. Very frustrating.

We found there was a period of time during downward "slippage" when you just couldnt predict what was coming next, and were constantly tense and fearing the phone! What would the partner do if you were on a long trip somewhere? Do they know who to contact for health agency help?

Eventually something will happen that will land her in the hospital, wake the partner up to the danger she's in and they'll seek information about her options.

But nerve-wracking isn't it? 😟

Xxx. Anne G

My wife is nothing like what you have described, but I took her to an Elder Attorney who explained to her that he was going to take her rights, and assign them to me. I have the papers, but I still can't get my wife to remember to keep herself safe.

At times I get angry and tell her that it may be time to put her into a facility. That thought of being put into a facility seems to get her attention. For a week or 2 everything runs OK.

I guess what I'm saying is the battle to keep a loved one safe never ends.

I'm sure this is not what you wanted to hear, but now you know you are not alone

Andy

Cocodunny
Cocodunny
in reply to grafixapn

Thank you Andy. Do you have full time care givers?

grafixapn
grafixapn
in reply to Cocodunny

Yes, I live in the USA, and we have Medicare for those who can't afford much. My going to an Elder Attorney, he to0k everything that was in both our names and transfered everything to me. It resulted in my wife being eligibil for a caregiver, plus all her medical bills are covered.

My wife required major surgery last year, with the bills coming over 1 million dollars. Who, today has an extra millions dollars? If you live in the US, you may want to visit a website I run for our local PSP support group. supportpsp.com The site has just information and is free. Even if you don't live in the US, I think you will find something there that can help you.

Andy

Thank you Andy. Will look now.

It's PSP

I was with my husband all the time but was not able to keep him safe. He couldn't control his impulsive behaviour. He would promise he wouldn't move and get up immediately.

There's a number of threads about managing it.

It only stopped when he was bedbound.

It's a nightmare

Love Jean xx

One of the hallmarks of how this condition has manifested itself in my mother is extreme denial that this all happening to her - and every change, and decreasing ability has been met with her strong denial and nasty anger directed towards those trying to intervene on her behalf for reasonable accommodations and adaptations. The stories are endless, spanning 5+ years. Mom would frequently lie about events or cover up issues. She screamed at me for suggesting Depends when she had been incontinent for over a year and her house started to smell. She berated me for a several months when I bought her a motorized lift chair and was so indignant that I’d buy her a piece of ugly furniture for “old people”. (She later came to love the chair so much that it was the only piece of furniture she wanted to take with her when she finally moved into a care facility.) I once had a doctor approach me and tell me we needed to take better care of mom’s hygiene - at a time when mom was refusing to talk to us about anything (and she was still living alone). She did not tell me when she had her first major fall for two weeks (I only found out when I was questioning her major bruising). She has asked me to drive her to Doctor’s appointments and then told the Doctor’s I couldn’t come into the exam room because I wasn’t to be trusted (she basically fired every doctor who told her she had CBD - and she didn’t want me providing my observations and facts that would have corroborated the diagnosis). So, I guess I’m saying it might be the disease itself that you are trying to reason with.

Ettavb
Ettavb
in reply to Ettavb

And many people told me to have a serious conversation with her (which I did many times), but they really had no idea as to what lengths she would go to re-write history — and even when I would finally get her to agree to something, she would often change her mind and we were back at square one. One of the worst aspects for me was when she would pit my sister (when she was still alive) and I against each other in regards to her care - she was extremely manipulative on this front, telling one or another not to tell the other about something, or telling one or another that the other one was wrong, not trust worthy, etc. She’d spin out these elaborate stories of a psychological nature that would cause you to start second guessing one another, or even yourself. She excelled at character assasinatuons as a way of wielding control over things; my sister was easily manipulated but I not so much (I of course had my husband for checks and balances). Now that mom is in a care facility - the behavior continues, it’s just not directed at me as much anymore. But I often get calls about how all the aids are against her, and they won’t let her walk (she has been bedridden for over a year now). I also get calls from the facility about mom often refusing care, or refusing to follow rules, or just general calls about how difficult she can be, and for me to intervene and to try and talk some reason into her.

doglington
doglington
in reply to Ettavb

It sounds awful. Was she always difficult ?

Ettavb
Ettavb
in reply to doglington

She was always self-sufficient, determined, intelligent and knew what she wanted but she was also reasonable and approachable. The latter two have changed significantly.

doglington
doglington
in reply to Ettavb

How sad for you both. It's tragic.

Love Jean xx

Thank You Etta. I think we kind of know that. I must say that you have had it a lot worse than us. Our mother doesn’t really manifest her anger so vehemently. She withdraws. So I’m not sure which is worse.

Ettavb
Ettavb
in reply to Cocodunny

It’s the unapproachableness that is the issue wether it be from withdrawing or from building walls via manipulations/anger. My mother’s behavior fits in with the possibility of personality changes as a disease symptom.

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