My father-in-law was diagnosed in March with both neurological diseases and I feel like his kids don't quite understand the ramifications of these diagnoses. I've been living with him for 10 days now and my compassion has gone WAY up as I think I have a better understanding of his diseases.
BTW-After 10 days, I'm exhausted with the level of attention he needs. It's been eye-opening to say the least.
What is the best book I could read and recommend his kids read to better understand what's happening to him?
His children lose patients with him because he doesn't exercise. They seem to blame him for his current physical state. I'm realizing - he can't. He can't walk very far, very fast, very steady. He doesn't seem to have any muscle tone. He eats very little. His stomach is upset often. He worries constantly. He's hard to hear - soft voice and can't project any more. He gets confused occasionally about details - past or present.
(On top of this he is a retired physician so I think it's a little tougher for him as he is familiar with the realities. He was almost 80 when he retired - he is now 82.)
All of which is to say I'm living with a man with both Parkinsonisms and dementia. Caregiving someone with both kinds of symptoms is exhausting (although caregiving in general is exhausting) and heart-breaking. LBD is characterized by fluctuations in cognition -- there are periods of lucidity alternating with periods of confusion. While lucid, the person often recognizes the realities of his situation and that is perhaps more cruel than being "out of it" all of the time.
The books by Michael J Fox are highly readable glimpses of Parkinson's Disease (although without the added dimension of dementia). "Life in the Balance" is by a physician with Parkinson's and dementia. I've read several good books on LBD. Your family might be more interested in Alzheimer's and I'm sure other members will suggest their favorite books. Pat Snyder's "Treasures in the Darkness" is by a caregiver.
I highly recommend "Loving Someone Who Has Dementia" by Pauline Boss. "Creating Moments of Joy" by Jolene Brackey contains practical tips for dealing with Alzheimer's patients, particularly in a care center.
It is not surprising that his kids don't understand the situation. It is very hard to grasp unless you've seen it up close and personal for at least several days -- phone calls and visits of a few hours really do not reveal the nature of the disease.
Best wishes to the entire family as you embark on this very challenging journey.
Many people with Parkinson's get dementia somewhere along the line, so this isn't terribly unusual.
Your are probably right that his being a physician makes it all even harder for him as he knows what he's facing. Please look at getting help with his care. You can't do it all alone.
Take care of yourself, as well,
Carol