I just read Florrie Munat's book, Be Brave, A Wife's Journey Through Caregiving, in which she tells the story of her six year care partnering journey with her husband, Chuck. I was impressed with her honesty as she shared how she'd been caught up in so much denial and "magical thinking." Intellectually, Florrie knew that Chuck's dementia was an incurable, progressive disease but emotionally, she could not accept that prognosis. She talked about how she felt that she must stand in the path of the progress of the disease, that she felt that if she did everything "right" she could stop it, change it, get their life back. Of course, this was a lost cause and so then she added guilt and failure to her other emotions.
Sadly, Florrie's story is not unusual. It is similar to that of many care partners, complete with denial, or as she calls it "magical thinking," gargantuan efforts, guilt and failure. No wonder care partners are so often burnt out and often die before their charges do!
When Jim and I talked about Florrie's story we began to look at it another way. Chuck wasn't the only one with dementia symptoms. Anyone who experiences extreme stress will also have dementia-like symptoms, not dementia itself, but the same symptoms that people with dementia have. Their thinking becomes inflexible, single-minded and obsessional.
When a person living with dementia (PlwD) has a delusion, they are stuck with it. Their limited thinking abilities do not allow them a second opinion. They must believe the delusion their brain has presented to them as fact. A care partner can explain, argue or defend but nothing will change the PlwD's belief, their reality.
In her stressful condition, Florrie's "magical thinking," caused her to believe beyond all doubt that she had to be with Chuck continually for him to be cared for properly. Even though many people whom she respected and whose advice she normally would have accepted told her to let go, to take some time for herself, she couldn't do it. It wasn't that she wouldn't. She literally couldn't.
Florrie's magical thinking was her reality and she was stuck with it just like a person with dementia is stuck with their delusions. Care partners learn that they cannot explain, argue or deny a delusion because this is their loved one's reality and it can't be changed; not by the care partner and not by their loved one. Likewise, you can't expect an overburdened, stress-out caregiver to understand the need to change their behavior. Suggesting this will simply increase their determination, adding feelings of loneliness and isolation due to your obvious lack of support for their "very necessary" efforts.
What usually happens is that something interferes. For Florrie, it was getting a definite diagnosis of LBD*, at which time she began to accept the invincibility of Chuck's deterioration and the fact that he'd never be able to live at home again. Often it is something more drastic, a fall, an illness, an injury of some sort, maybe to the care partner, maybe to their loved one. But something finally gets the care partner's attention and they have to accept that they can't do it all.
A month after Chuck's LBD diagnosis, Florrie was taking more time for herself and she was able to write in her journal that it was a privilege and blessing to take care of Chuck. When she let go of the full responsibility for something she couldn't control, it greatly reduced her level of stress. Then, unlike true dementia symptoms, her stress-related dementia-like symptoms decreased and she was able to enjoy life, and Chuck, again, but in a more accepting way.
Most people don't even want to consider the possibility of dementia before they have to. Denial is not only possible, it's the norm! But treat the need for self-care like insurance. When you buy a car, you don't plan to have a wreck, but you buy the insurance anyway. And you don't wait until you need it, because then, it's too late. You buy it as soon as you get the car, so that no matter what happens or when, you are protected.
It's the same with dementia. No one plans for their loved one to have dementia. But "buy the insurance." At the first hint that dementia might be in your future, start thinking about self-care. That's as important as finding out what kind of treatment is best for your loved one. Find out what you need to make routine to avoid caregiver burnout and put it into practice now even if you don't feel the need of it. These are the things like taking an hour for yourself that get lost, forgotten and dropped as the caregiving gets more demanding. By making your own care a priority right from the first and setting up routines to protect it, you will give your loved one a much happier, relaxed and just plain better care partner.
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
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AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia