- Feb 22, 2022
Thanks so much for your share. I have Terminal Brain Disease. I can’t find any support here. The only posts I see are how horrible we are. Then the next post is how much worse their We is compared to your We. Where’s my support? I came here because it said it’s a support group.The following piece was posted a while ago on TP and made a big impression on me. It is something I have referred to time after time and tried hard to follow.
We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if it had a Thread of it`s own.
It`s a tall order but an excellent guideline.
Compassionate Communication with the Memory Impaired
by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.
You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.
They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.
Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.
Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.
Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”
Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”
They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.
Patient What doctor’s appointment? There’s nothing wrong with me.”
Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
DO (short explanation) “It’s just a regular check-up.”
(accept blame) “I’m sorry if I forgot to tell you.”
Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
DO (respond to feelings) “That’s a scary thought.”
(reassure) “I’ll make sure they don’t do that.”
(distract) “Would you help me fold the towels?”
Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.
Don’t remind them they forget
Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
DO (reassure) “You really like talking to Joe, don’t you?”
(distract) “Let’s call him when we get back from our walk.”
Don’t question recent memory
Patient “Hello, Mary. I see you’ve brought a friend with you.”
Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”
Don’t take it personally!
Patient “Who are you? Where’s my husband?”
Don’t (take it personally) “What do you mean – who’s your husband? I am!”
DO (go with the flow, reassure) “He’ll be here for dinner.”
(distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?
Do repeat exactly
Patient "I'm going to the store for a newspaper."
Don’t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."
Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."
Used with permission from Ellen Warner at Ageless Design
As per requests from members: another source of this information is here