Look at it from the PlwD's view:
Something isn't right. I don't really know what's wrong but I do know that when I'm home I feel comfortable and safe. Since I don't feel comfortable and safe right now, I must not be home.
"But you are home. We've lived here for 20 years!" your care partner says.
That can't be. What is she trying to tell me something that clearly isn't so. This isn't my safe, comfortable home.
"Look around," she tells you. "See this is your very own chair, and that's the carpet we bought a few years ago and..."
I have to say she's gone to a lot of trouble to fool me. The chair and the dresser do look like mine, but I KNOW this isn't home. I wouldn't feel the way I do in my own home. She can't fool me. I'm so mad.
Does this sound like some of your interactions, but from a different point of view? Here are some basics to remember and some suggestions for putting yourself in your loved one's frame of mind. To get the most out of this, rely on what your senses and emotions first tell you. Don't think about it. PlwD don't--they can't.
- Emotions trump reality. What the PlwD feels is more important that where they really are. "Home" means comfort, thus discomfort means "not home."
- First impressions are all there is. The PlwD doesn't do the abstract thinking that change requires. The PlwD bases their impressions on the first feelings they experience after they perceive something and that's what they are stuck with. Their brain can't change.
- The PlwD bases further feelings on their initial response. That is, once the PlwD decided that this isn't home, they will respond just like you did about the car---and with negative feelings about being lied to.
- The PlwD responds to negative feelings with negative behaviors. They will do the first thing they feel like doing without considering the effect or consequences.
All is not hopeless. With this inside view of the PlwD's cognitions, a care partner can choose words and actions that will help a PlwD feel more at home. Next blog will be about "going home."
We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD, LBD, DLB, MCI, PD, PDD, etc: person/people living with dementia
(Substitute your loved ones name here!)
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
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.