How do I deal with optimistic well-wishers?
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.
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.
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.
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.