I Want to Go Home, Part One

Almost ever care partner has heard this request. Most start out by telling the PlwD,*  "But you are home" only to find out that instead of making things better it made them worse. The same is true for the care partner who tries to explain to a PlwD in a care facility that this is now their home.
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."

Try it: Think about how you feel about "home." Is this the place where you feel most comfortable, most safe? Is it where you want to go when you don't feel well?

• 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.

Try it: What are your first impressions, your first feelings? Imagine that someone tells you something that you know isn't true. Say, that the blue car you are looking right at is really red? React at face value. Don't add or subtract anything--that takes abstract thinking. So now, go back and look for your first feelings. Incredulity ? Affront? Disbelief?

• 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.

Try it: Imagine that someone that you depend on seriously tells you that this isn't your home. Would you feel lied to? Hurt? Belittled? Angry? Scared?

• 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.

Try it. What is your first impulse upon feeling lied to? What is the very first action you consider? Do you want to strike out, resist, argue, withdraw, hide, cry? You can choose not to do these things but the PlwD can't. If they feel it they will act it out.

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."

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* Acronyms:
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.