Saturday, October 04, 2008

My Past is Now My Future: A Practical Guide to Dementia Possible Care

Due to some concerns we are having about our father, my brother put me onto a book called My Past is Now My Future: A Practical Guide to Dementia Possible Care by Lanny D. Butler, MS, OTR and Kari K. Brizendine, PT.

The book is quite short: 88 pages. And if you cut out the conceptually empty pages--14 of them--that are either completely blank or feature a pencil drawing of a tree that is losing its leaves, the book is shorter yet. But it includes some truly priceless content.

Butler and Brizendine, as occupational and physical therapists, speak from years of experience dealing with elderly clients who are going through the seven stages of dementia summarized in Reisberg et al.'s "Global Deterioration Scale."

They provide practical examples of what dementia looks like at each of these stages, and, even more importantly, they suggest practical solutions to a lot of the problems faced both by the demented and their caregivers--family members as well as elder-care professionals.

Sadly, the book is extremely hard to acquire. I couldn't find it anywhere online. I eventually got in touch with Mr. Butler directly, and I intend for my company to carry it. I imagine it will take a couple or three weeks before I can get my hands on a few copies.

Early in the book, Brizendine shares a little historical perspective on the general content of the book. She tells us how she spent many frustrating days trying to get her demented clients to follow her directions.
"Nora, place the water in front of you and take two steps," or, "Jim, sit down and rest five minutes." It just wasn't working. Nora would be rearranging the furniture or Jim would be pacing up and down the hall.

No amount of repeated direction or gesture worked. I even tried to sound firm in my command. "Sadie, stand up from the chair." Sadie would unlock her brakes and roll down the hall. . . .

Then one day the heavens opened and all that was not possible became possible.

I learned from my mentor, Lanny Butler, that I had it all wrong. Rather than expecting people to enter my reality, suppose I would decide to enter theirs!

[I asked Lanny,] What do you mean by entering their reality? The things they are doing just don't make sense to me. Why would Elsie be layering up her clothes? One sweater is enough. Why would Walter walk down the hall polishing the woodwork? It's already shiny and clean. Furthermore, why would Oscar have a bowel movement in the trashcan when the toilet is right behind that door? Enter their reality? Are you nuts?
Butler answered her question with a number of plausible hypotheses as to why the people that were driving her nuts were actually acting quite sanely within the limits of their mental capacities.
  • Elsie's hypothalamus, he suggested, has been destroyed. (The hypothalamus controls body temperature.) As a result, Elsie puts on all the sweaters she does because she feels cold. It is her reality.
  • Walter: He polishes the woodwork because he used to be a janitor at an elementary school and he had to keep everything clean despite the fact that the kids were constantly messing up everything he did. --So he was "just being himself" as he walked down the corridors in his long-term care facility: "just keeping it clean" as best he could.
  • And Oscar? He could have relieved himself on the floor, if he had been truly and completely socially inept. But he wanted to avoid that worst-case situation. He dearly, dearly needed to go, but he had no idea where the toilet was, because there was no sign on the door. So what's the next best thing?
Brizendine then went through a list of other people whose actions made no sense to her:
  • Annie, who would just stand facing the door. . . . Just standing there. Because she had forgotten how to turn around.
  • Frank, who kept taking off his shoes. --Brizendine had figured he was acting that way to get attention. But, no, Butler urged, he was taking them off for a much more mundane reason: his feet hurt, and he was just trying to get comfortable.
  • Myrtle, who kept taking all the other residents' clothes. Why? Because, as a clerk in a clothing store, it was her job to collect the clothes left in the dressing rooms and to put them in their rightful places. --She was "simply" "doing her job." . . .
Butler and Brizendine don't return to this theme of "entering the reality" of the demented again until five chapters into the book, but when they do, I think their insights are transformative.

I think, when someone appears to be operating outside the bounds of reality, we normally feel a kind of responsibility to "wake them up": "Hey! You're out of touch with reality!"

We feel it is inappropriate for us to leave them in the midst of their delusions.

Do the same rules apply when we are dealing with the cognitively impaired elderly?

One of the words I use in the subtitle of this blog is "ethics." So I would like to raise an ethical question. Talk to me: What are the ethics of the following situation?

Suppose you decided to go on a walk with Elsie, who is in the fifth stage of Reisberg's scale of "primary degenerative dementia." (At this stage, a person not only no longer remembers things, but is unaware that s/he no longer remembers things. He or she is happy to live in the midst of the ever-present "now" . . . because s/he is unaware of any other time-frame . . . because s/he has no memory of any other time-frame.)

So you went on a walk with Elsie. . . .
Now suppose while you are on your walk, Elsie started crying and said, "My dog just died this morning."

You know that Elsie hasn't had a pet for at least 10 years.
As I said, this is an ethical question. So how would you respond to Elsie?

Think about that for a minute. Then see what Butler has to say, working out of his "enter the reality of the patient" model:
Instead of correcting Elsie or changing the subject, it would be most appropriate to say, "I'm sorry to hear that. Please tell me about your dog." . . .

[Such a response] will give Elsie comfort in feeling that you empathize with her sadness. And this is where she is in her reality and no amount of convincing will put her where you think she should be at any given moment. . . .
What do you think?

(My opinion: Revolutionary! But it makes sense. You're not quite affirming her delusion, but you're not arguing with her, either. You're entering her grief . . . which, at this moment, is all she is able to handle.

Butler continues:
We treated a client on one occasion that served in the Army. When we asked her to stand up, she would stare at us blankly. If we said, "Attention!" in a firm command, she would stand up immediately. Not only did she stand up, but she demonstrated the beautiful upright posture that she had while she was in the Army. She was still in the Army in her mind and we were able to accomplish transfers and gait as well as work on postural correction in this manner.
What do you think? Unfair? Abuse? Manipulative? Or . . . ????

Another example:

Butler and Brizendine were having difficulties with a woman named Mabel who kept taking socks from other people's rooms. Their solution? They asked themselves: Let me pretend I am Mabel.
Do I fear I am going to run out of socks? Maybe. But further exploration reveals that Mabel worked for 50 years as a hosiery inspector at a mill. Perhaps she is inspecting the hosiery! . . . [It turned out] the solution [to keep her from taking other people's socks] was to give Mabel a basket of stocks and hosiery to keep in her room for inspection whenever she got the whim.
Butler and Brizendine multiply examples like this.
Besides practical illustrations of how demented people seem to think--and how, therefore, we might "enter into their worlds" and "validate their realities," Butler and Brizendine offer very "humane" suggestions of how to use this understanding to help to mitigate the truly uncomfortable, unhealthy, or dangerous aspects of their otherwise bizarre behavior:
  • What about the person who tends to go to the bathroom where it is inappropriate? Or the person who handles his or her feces?
  • How do you help the person who wants to "run away"?
  • How do you handle holidays?
  • How can you ensure that your loved one's home--either his or her own, or yours--is truly safe for them? (Butler and Brizendine provide a handy--at first shocking, but then, as one thinks about it, very reasonable--checklists of things to beware of in the kitchen, bathroom, bedroom, stairways, living room, and yard.)
  • How do you decide whether a long-term care facility is appropriate for your loved one? Again, Butler and Brizendine offer a wonderful list of suggestions that should give you a very good idea.
  • When you're confronted with a new "strange"/inexplicable behavior, how can you "get inside your loved one's head" so, as Butler would say, you can effectively "validate their reality"? --Butler and Brizendine provide a detailed, five-step process.
  • Oh! This one blew me away: a "My Way" questionnaire that, if filled out before a person slips into the final stages of cognitive impairment, can help caregivers work more effectively with this person.

    As Butler notes,
    Most of "My Way" of doing things is known only to me. Even though I have been married over 28 years, my wife knows little of my morning routine. Why? Because most of these activities are done in isolation. Do you know how many squares of toilet paper your spouse or loved one uses? Do they fold it before they use it; do they stand up before wiping? Although this may seem irrelevant, each individual routine becomes subconscious and tends to occur exactly the same way every day and every time.
    The problem?
    As an occupational therapist, it is my responsibility to enable my patients to be as independent as possible in completing their self-care. This usually occurs with use of the adaptive methods or equipment. Generally, I request my clients to start at the head and progress towards their feet [when washing themselves]. If my client has a dementing disease, and this is not the unique order or way this individual has always completed his bath or the sequence of how he dresses, it is new learning... something that he is unable to complete or has extreme difficulty with.

    The individual will follow my verbal cues and wash the body parts on command, it will tend not to sequence through the task, resulting in a very long process....

    [However, w]e now realize that by knowing the individual's "way" of completing these tasks, the basic setup and where they start the process, is enough to allow them to independently sequence through the task.... Therefore, it is possible for people with dementia to continue to wash and dress and remain continent well into the last stages of dementia.
  • Oh! And there is a lot more in the book.
Short. To the point. All the stuff you want. None of the stuff you'd really be happy to be without. A wonderfully useful book for anyone who has a loved one slipping into dementia and/or for any professional care staff who could use some fresh insight.

I'll add information about how to order a copy as soon as I find out how to get more copies for myself!
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