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.

Dealing with Resistance, Part 2

Notice: We are well into our summer season of traveling and from this day until the middle of October, when we return home, I will be posting blogs every two weeks.

This week's blog is the second in a two-week series of blogs in answer to Joan's post:

The main time my husband I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Last week's blog was about Joan doing her homework, setting the scene and practicing being positive. Now, she needs to take a deep breath, put on her smile and go to work. If you haven't read last week's blog go do it now before you read more.

Joan, if your husband is resisting, he likely sees you as his tormentor. As long as this is so, just being positive isn't enough. Instead of trying to reason with him (hopeless!) or ordering him to be compliant (anger-making!), agree with him and become his ally.

• Help him to feel heard: Listen. Nod your head. Agree with his complaints.
• Help him to feel understood. Coo soothing words of sympathy. 
• Change the focus of his anger from you to what you want to change, in this case, his soiled pants. "Those awful pants are making you uncomfortable, aren't they? Let's get rid of them."

(Warning: Gentle touch is a great help, but not until the anger is defused. Otherwise, you are in danger of being hit as your husband strikes out in defense.)

Now that you are both on the same side, you can address any remaining fears. Work to figure out what the triggers are.

• One of them may be you! He may be reacting to his fear of giving up control--of being treated like a child instead of an adult. Work to treat this like a cooperative event as much as possible. Let him do what he can himself and include him in the task every way you can, even if it is simply to tell him what "we" are doing.
• Use your knowledge of your husband to think of any other fears that might be driving his resistance and think of ways to neutralize them.

With his fears decreased, his anger will dissipate and he will be able to start mirroring your positive attitude. With more positive emotions in control, he will be more agreeable and less resistant. Make sure you stay positive and give him lots of kudos. You can't overdo the compliments! Gentle, un-custodial touching (that given voluntarily and not needed for the job at hand) works wonders here. If you've planned for music, use it now. Music and its rhythm can help you promote togetherness, and the idea of working together. You can sing, but if you need your husband to help you, don't expect him sing too. He can do only one thing at a time.

If he starts getting resistive again, it means the fears are returning. This is especially likely to happen if you are too task oriented. Now is the time to take advantage of his short attention span and use distraction to change his focus from what he's beginning to worry about again to something pleasant. If you wait too long, the negative emotions will take over and you'll be back to square one. A bribe often works well--"Let's get this done so we can go have some ice cream."

Once the job is done, pile on the compliments, hugs and lots of gentle touching. And go get that promised ice cream. You need it too!

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.

Dealing with Resistance, Part 1

This next two-week series of blogs is in answer to a question from a frustrated care partner:

The main time my husband and I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Sadly, your concern is far from unusual, Joan. It used to be that you could reason with your husband, changing his belief and changing his behavior. Reasoning is now useless. It requires thinking skills a Person living with dementia no longer has. Think of the process this way now:

• The surrounding environmental triggers an emotion. These can also be residual, that is, something perfectly benign may trigger an old fear.
• This emotion drives your husband's beliefs. Most driving emotions are negative. Designed to motivate, they are strong, pushy and long lasting.
• Your husband's beliefs drive his behaviors. Once he has made up his mind, he CAN'T change it. Can't, not won't. But he can change his focus--with your help!

Your first step is to educate yourself. Most care partners simply want to know HOW to deal with these difficult issues. However, until you know WHY they are happening, you probably aren't going to be very successful. It will also be more difficult for you to take what you've learned and apply it to a different issue.

• Learn why your husband's dementia-damaged brain won't allow him to change his mind.
• Learn why he can change his focus and what the difference is between changing his mind and changing his focus.
• Learn why you are the one who must change your expectations, your attitude and your actions.
• Learn why negative emotions motivate and drive behavior while positive emotions encourage calmness and relaxation.
• Learn why negative behavior is often triggered by the fear of something to be avoided.
• Learn why it is so important that you start positive and stay positive, no matter what.

This information is on our website, in our past blog entries, in our books (see below) and in Teepa Snow's free YouTubes.

Next you must prepare. "Set the stage" so that there are fewer triggers--fewer things to avoid.

• A common trigger when skin is about to be exposed is the fear of feeling cold. Make sure the bathroom is cozy warm before you even start and have all the supplies handy so the job won't take any longer than necessary.
• If mirrors trigger the fear that a stranger is watching, remove or cover them.
• If you can think of other ideas to help your husband feel more comfortable, implement them. It is worth the effort!

To start positive and stay positive in the face of his resistance takes practice and determination.

• Being positive does two things. It prevents you from escalating your husband's behavior the way being frustrated would and gives him something to mirror. He can't change his emotions himself, but he can mirror yours.
• Make the practice of being positive a part of your preparation, and think about how you can stay positive even in the face of his resistance. You want to be believed and so you must smile from your heart. It won't work otherwise!
• Take some time just before you start to make a conscious choice to be positive no matter what. Think of the love you feel for him and be determined let it show, even in the face of his resistance.

Plan your distractions, the methods you will use to change his focus. Each person living with dementia is different and so the distractions that work best will be different for each one too.

• Bribes are always a good bet and ice cream is a favorite. Make sure you are prepared and able to provide whatever you use as a bribe quickly.
• Music and rhythm can help you focus on working together. Unless you plan to do the singing yourself, set up your music delivery system ahead of time so that all you have to do is push a button.

Next week: The real event!

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 Disordes

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.