The Whitworths of Arizona, bringing science to you in everyday language.

Friday, July 27, 2018

When They Don't Remember

Today’s blog is about what happens when a Person living with dementia (Person for short) can no longer recognize family. Care partners sometimes think they are no longer needed. Even in a facility where there is a good staff-resident ratio, the family care partner is a vital team member.

The memory care facility where I volunteer has a nice comfortable 5 residents per staff. (This is exceptionally low. The ration is often 8-1. HW) When staffer’s caseload is made up of mobile and continent residents, this works well. But the next day, the staffer’s caseload may be made up of four incontinent residents with one in a wheel-chair. Then, the staffer just can’t give the residents great care. Likewise, flu can make all five residents sick and incontinent. Families of residents need to show up often enough to be available and able to help in such situations and to advocate for changes if they are needed. -- Connie

Family can find it painful to visit a loved one who no longer remembers them, but it remains highly important. A resident who had regular family visits will almost always get better care.

That’s the physical reason families should continue to visit. There’s an equally strong emotional reason too.

My mother-in-law’s memory has failed. She still loves ice cream and so we usually bring her a cone and sit with her while she eats it. But then my husband, Randy, wants to leave. She usually recognizes him but she keeps asking the same questions over and over. He says, “If she can’t remember from one minute to the next, she surly can’t remember that I was here even a few minutes after I’ve left. What good does it do to go?” -- Sue

What Randy isn’t aware of, and what many truly caring, but frustrated, care partners don’t realize is that there is a difference between physical memory and emotional memory. True, Randy’s mom may not remember he’s been there, she will remember the emotions she experienced during his visit.  That’s why it is so important to help her experience as many positive emotions as possible.

Here are some suggestions for Randy:

Use patience. Yes, she will say the same thing over and over, but your ATTITUDE is what counts. Although the words don’t last, the feelings do. So focus on that instead of being impatient with having to say the same thing over and over. Think of your words as vehicles for transporting positive feelings from you to her.

Use touch. Just sit and hold her hand. Give her lots of hugs. Hugs when you arrive, hugs when you leave. If she is comfortable with you doing so, sit close enough to sling your arm around her shoulder. Touch travels to the brain via a different pathway than words do and it lasts longer too. Gentle, non-custodial (voluntary) touching also imparts caring and love.

Use music. Like touch, this is another pathway and it will last longer than words. You may find that it will actually help her to think more clearly and remember a little longer as well. Music can trigger residual emotions…emotions remembered from earlier events. This can be very enjoyable as long as you work to elicit only positive memories! Develop a playlist of her favorite songs. and sing along with her. That will add the positive feeling of togetherness.

Use food, or other favorite things. Randy is good at this. The food he brings leaves her with a memory of the pleasant feelings she had while she ate it. Ice cream is a dementia favorite. Sweet is often the last taste to fail, and the cold smooth texture is also pleasurable. And so is the still present emotional memory of other pleasant times when ice cream was consumed.

Do something with her. The fact that you are doing it with her is more important than what it is. This will bring about feelings of togetherness, self-esteem, and affections that will last long after you are gone and the event is forgotten. Look through a photo album, sing songs together, pray together, eat an ice cream cone too.

The bottom line is to do whatever you can while you visit to a) make sure her physical care is the best it can be and b) provide her with lots of positive emotions to remember later.

For more 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.

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