Hey (real name deleted),
I hope all is well.
I am having the time of my life getting to know and assist your mother.
Here are some notes I’ve thrown together the last week, I haven’t even contemplated them all myself yet, but I basically consider my own methods progressive, others have said “radical”, so let’s both please edit as we go, staying mindful of your caregiver’s professional motto:
ALZHEIMER’S IS A SOCIAL DISEASE.
Ok, here we go:
QUESTIONS, REMINDERS, GOALS, ETC
· Preserving family
· Ruth is smarter and more cerebral than average, therefore the loss of her intellect is more devastating to her than what is often seen in dementia victims. Re-directing her entails greater subtlety than usual, because she is so perceptive, and knows when she’s being “handled”.
· One thing we can do to promote orientation is to say her name (or honorific) warmly and often. This is a small but significant aid, it’s what I mean by subtle.
· She won’t cooperate at present with leadership, no matter how logical the directive. She feels like the world is judging and bossing her, she is publicly on display right now and she knows it, we have to challenge the stigma associated with her disease, or the next step is paranoia.
· I encourage her sense of personal autonomy every time I refrain from bossing her, which is both unnatural and counterproductive, and instead say, Ruth, let me know when you’re ready to go down to dinner. She is likely to comply, as this is the natural way people talk to each other, and she is a solicitous woman; it makes her feel good to stay connected to that side of her personality. If she is bossed it brings out the abrasive side of her, much as it does with everyone.
· We are about to discover, in ourselves, just how comfortable we are with paradox. How does paradox inform our comprehension of her?
· Her skills come back real fast when you act like she knows what to do. I tell her she’s fabulous, taking care of business, on target, etc., this makes her smile.
· The affective states caregivers find so disagreeable in A.D. patients are often produced by their own stubborn ignorance and unwillingness to yield.
· Moreover, the anxiety, abusiveness and rage the patient presents impedes her completion of the task at hand. As does the caregiver’s resentment of these expressions, which she, the caregiver, unwittingly provoked.
· Let’s try to understand the particular autonomies Ruth is trying to protect. Which are the most important?
· What freedoms are taxing her to the point she would be relieved to give them up?
· How attached we are to arbitrary views of consensual reality, and what does this imply when Ruth increasingly violates our view of how the world is supposed to work?
· Can you tell the difference between sympathy and empathy? It’s huge. Get to know caregivers who eschew the former and can do the latter. It will make a big difference in how your mom handles her disorientation.
· The more we respect her frame of reference the faster she can return to ours. (She stopped spitting in public 2 days ago, I never criticize her for spitting or anything else, ergo she does not feel embattled or attacked, this frees her will to observe and mimic the way other people behave socially.)
· Ruth can no longer negotiate unfamiliar surroundings. We all need to learn how to cope with her inability to cope. Consider this: Ruth is passed learning, she is now the university and we are her students.
· Normalize her memory lapses, normalize all that is going on with her, it is normal for upwards of 3 million Americans. Many famous people have had Alzheimer’s, it can be reassuring to hear their stories. I tell her she is entering one of the most challenging stages of life, and she is not alone, in every sense of the word.
· Casually mirroring her limitations can be reassuring—if Ruth is having trouble with buttoning her dress, let her see you having trouble with your zipper, when we casually complain about minor things it reduces her self-scrutiny.
· Whenever I leave Ruth to be with her friends I gently remind her to “let people help you.” She seems relieved to hear this.
· People from her generation are good and do want to help each other, but they first need to know what’s going on. If they don’t understand what’s in front of them the helping instinct can get twisted up into hostility, apathy, avoidance and invisibility.
· To maintain her skills requires us to wait for her to complete a simple task, it may take 50 times longer than it used to. If this bugs us, imagine how it makes her feel. Waiting is the hardest thing we do in western culture, it does not bring out the best in people; that goes 10 times double for frustrated caregivers. Can we take a break or seek support when it overwhelms us?
· Her future caregivers should have a capsulized life history available. Ruth will eventually be unable to generate memories, but if prompted they could come back. If she is asked “Do you have any children?” she may draw a blank, but if asked a specific question, using her child’s name, the conversation might be more productive.
· Lifetime achievements of which I am aware:
· Quit smoking cold turkey, 30 years ago.
· Writer, creative non-fiction narratives, self-published and readable.
· Raised 4 kids, all turned out good.
· Homemaker, no divorce, family-oriented, lots of travel, literate, cosmopolitan, heightened aesthetic sensibility.
I agree with the A.D. theory regarding “levels of knowledge”—on a deep level the sufferer knows what is going on with her and doesn’t want to face it, ever, but can’t avoid the horrible truth, which is one reason their speech turns to poetics in the later stages. This inchoate understanding is universal with Alzheimer’s patients, and it is private, we need to be gatekeepers of her rumination, while respecting wherever she is on a given day regarding her feelings about what’s going on.
I try not to use the word Alzheimer’s until the patient opens the door, even then I tend to misrepresent the totalizing experience of the disease and talk about age-related short-term memory loss, emphasizing that it is caused by physical changes in brain tissue, and is thus a medical condition, not a mental one. It gives them hope to hear that the right meds will ameliorate the symptoms, that for now the doctors are just trying to figure out what’s going on, and there will be drug trials in the future, to find the combination that works best for her. Doesn’t matter how “true” this is, it sounds proactive.
So much for theory, as for problems, mornings can be tough.
Talk straight, using nouns and verbs, prompt her, follow her routine-
All of this may be accompanied by venting, including 4 letter words, it lasts about 20 minutes, whatever, the more she unleashes her pent-up emotions the more empowered and capable she becomes, leads to mild appreciation of her circumstances, her nice apartment and possessions, etc.
Don’t over-talk or touch her in the mornings, she’s working hard to orient herself, no extraneous stimuli, she can’t always tell when she is being harassed or helped, it frightens and frustrates, please give her plenty of room.
Now that she is losing her faculties, for the first time in her life she believes she has to do everything perfectly (self-consciousness run riot)
Empathize, eg: “The right medications can slow down the confusion, but you’ll never be perfect again; the good news is you don’t have to be.”
Problem: Our comprehension of Ruth’s time and place:
Soln: Look at old photos and note the ones in which she recognizes herself: if she doesn’t recognize herself at age thirty but does at 18, you can surmise that today she is 18 years old.
Ruth ignores speaker when spoken to. Speaker reacts with anger and frustration.
The speaker realizes that Ruth is not being rude but simply does not understand the request and is ignoring it in order to save face. Break down the directive in simpler steps until Ruth can process the information.
She is adrift in a kind of loneliness most people can’t begin to imagine, it is the ruling affective state at this stage and we can help.
She likes to have heart talks while the 2 of us are lying on her bed, when she requests that we lay down a while, it means she wants to talk. Today she said that she doesn’t speak to anyone the way she talks to me, this is a good and easy pastime, a trusting ear to listen to her end-of-life-issues, her history, relationships, marriage and motherhood, and eventually salvation, death, and the afterlife. This is all going to come up. A.D. patients become engaged and lucid when talking intimately and honestly about themselves.
Yesterday after talking she spontaneously broke into the Beatles refrain “…let it be, let it be, oh let it be, let it be, I will find the answer, let it be.”
It’s God’s work we’re doing here.
This week with your mother (real name deleted), has been one of the highpoints of my entire year, I appreciate your faith in me.
Copyright Robin Plan and troublewaits.com. All rights reserved.