Follow
Share

My father has a Parkinsonian disorder, can barely walk and has trouble swallowing, and my mother suffers from a mix of mental illness, early dementia and caregiver burnout. She refuses to accept any help with his day-to-day care because she says things are not that bad. I think they know things are really bad -- he's incontinent for heaven's sake, but they refuse to admit it. They both tell me he is getting better all the time. Besides, my mother is certain that a cure, a magic bullet, will be invented any day now. A man they met at church told her so!


What they have done is to latch onto every person in their life who supports this view and to avoid people who do not. This turns out to be not seeing or taking advice from the reputable doctors and instead taking advice from people like their gardener, personal trainer, former business contacts, bank tellers etc. I can't really blame them for telling my folks what they want to hear, but it is so frustrating to talk with my parents about downsizing and then to have my mother say, "Well, the trainer and the man at the bank say your father looks the best they've ever seen him, I don't think we need any help or to move. He's getting better."


If I had POA and my parents had a plan for their care this would not be an issue but we do not. Instead of talking about those essential, practical issues they just want to tell me about the latest exciting suggestion from their wonderful "friends" ie you should only eat meat (bad idea for Parkinsons) or you should fly to China for treatment.


Thank you, wonderful people, for letting me vent.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
I should add: don't focus on the "big picture", but rather on the aspects that comprise it, and find ways to turn them into positive ones. Little by little, their confidence and outlook may improve. Even if they may never face the brutal truth, at least you might be able to minimize some of their anxiety.
Helpful Answer (2)
Report

If they were ready or capable of accepting the frank and sometimes brutal truth, they wouldn't be seeking "advice" from well but not quite informed wishers. I've seen this too; I think it reflects a combination of fear, anxiety, and just not being able to accept decline.

And I concur that not addressing the dire truth is better; think of ways to work within the current situation and maximize the good aspects if you can. Focus on activities and conversation that redirect from health. Play music to provide relaxation.

These caregiving journeys are challenging ones that force us to rethink how we've thought about life, perhaps for years.
Helpful Answer (2)
Report

I like Countymouse's approach, instead of confronting them with reality try to work with where they are now. See if you can figure out what kind of help they might accept "temporarily", "just so mom doesn't get too run down" or "to free up their time" to chase their Pollyanna pursuits. If not help with personal care then maybe a cleaning service? Help with shopping and errands? Meals? Or any little thing that may take some of the pressure off and get them both used to working with outside help.
Helpful Answer (2)
Report

I agree with both comments, plus all the sympathy in the world for you.

You could fantasise about punching the Polyannas in their stupid fat mouths.

Do keep strictly to fantasies, though, won't you.

Their refusal to listen to reputable, responsible practitioners is a real worry. You could keep looking for that one special PCP who can approach things from their perspective so as to guide them gently back to the real world; but I'm afraid most will either go along with them - the patient is always right, no point in arguing - or will be too straight with them and they'll just leave and you're back to square one.

Downsizing is certainly desirable but other things are more essential. Are they fed and watered? Is your mother managing to keep your father clean, God knows how? And, what do you think she's afraid might happen if she were to accept help? - if you can get to the bottom of her fears, you might get somewhere.
Helpful Answer (1)
Report

If listening to positive affirmations from the butcher, the baker, and the candlestick maker allow your mom to have a good attitude about the stage she and your dad are at I say let her enjoy it. Eventually something will happen--a fall, an illness--and big changes will need to be made but until then I say let your mom have her denial.
Helpful Answer (6)
Report

I know you love your parents and don't want to see them suffer. I know what other people are telling them is far from practical and in some cases can be harmful. I don't blame them for falling into this trap because we all want a magic pill. Real life is hard enough and we all want to hang on to hope no matter how fruitless sometimes.

My father was very stubborn. And in hindsight, I did need to be more aggressive about his care. I let him get away with too much and I feel this caused his death. Since your mom is in denial, maybe consider organizing a family meeting with a case worker, social worker, counsellor or therapist. Try to access community resources or church supports to help her stay in the house.

I know its not easy and you are doing your best. But you might have to let them be for a bit. Thinking of you.
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.