In it, the writer Christine Wicker highlights the work and thinking of Michelle Bourgeois, a professor at Ohio State U, "who is an expert at communicating with people who have dementia."
She has some interesting and potentially worthwhile thoughts about how using written cues--written large if need be--are often more helpful and comforting than repeated spoken information.
Additionally, and very interestingly, she is working to "dispel the belief that Alzheimer's makes people miserable." Her work thus far suggests that patients who are comfortable, well cared for, feel safe, etc, tend--when asked about their quality of life using pictures with captions--to answer that their lives are good.
It's a worthwhile and quick read. Makes me want to look into her research a bit further.
"Memory Books and Other Graphic Cuing Systems" is a book by Michelle Bourgeois that you can find on Amazon by searching the author's name. Looks possibly interesting. On second thought...must be a very small press and print run. Or academic. VERY expensive books.
Or, we could hire her to do a seminar for $1800! What say ye? No...yeah...I guess...that is kind of a lot. Ok, next idea...
The article was interesting. I had assumed that my DH was having difficulty reading as he had alsmost stopped but didn't he prove me wrong by reading the paper thoroughly this morning!
DH can read, he does crossword puzzles and gets them all right mostly. He will read all the billboard signs when we are driving. BUT...he cannot read a book - can't keep track of the characters; cannot watch new TV shows - can and does watch the old re-runs of NCIS, Law & Order, etc., because he knows the characters!
Emily--The article really piqued my interest and I tore it out to share with my support group. The part about using written cues I had heard before, and had actually done it while my husband was in the early stage. Now, I'm not too sure about his reading abilities, so I had stopped, but I think I'll give it a try again.
The part about dementia patients, under certain cirumstances, feeling that their lives are good is the best news I've heard in a long time! If true, at least it does mean that we caregivers potentially have some control over SOMETHING.
You know, I cannot wholly disagree with this article. I wrote notes for my DH, maybe not specific enough, but they were sometimes just tossed back at me in contempt. But this quote is what bothers me about 'experts.'
"We find that if caregivers aren't stressed and in a hurry, if the patient is well cared for, and if they feel safe and in a good environment, they think their lives are good," she says.
My DH was well cared for, I kept him safe and in a good environment, our lives were not that bad--except for the constant emotional sadness--often enough he was happy--my caregiving days are over now, but because of my writing, I'm still in the AD community, and so I ask........
How many of you are not stressed! It comes with the territory, how do you put it aside, when are you not in a hurry, not sleep-deprived? I probably have a bit more patience than most, but I confess I've lost it, I didn't have the time, enough patience and the inclination to do so many of the things 'experts' suggest.
I'm a very positive person, I hate to be negative, but geeeze--not in a hurry, not stressed!
Betty, it's true. I can't argue that it's easy to avoid stress in this gig. But I also know that my mood (even if I try to keep it to myself) radiates like a kerosene heater, and if I'm tense or touchy, he picks it right up and reflects it back.
So yes...it's a tough thing to ask: Be a non-stressed caregiver. As we know, it's just not always possible.
BUT...I agree with Marilyn's observation: In a way, this gives us a little control over at least something! And, it also heightens and highlights the importance of--whenever possible--our doing whatever it may be that we need to do to keep ourselves happy. Whether that be more respite time, more hired help, more self-indulgence. Clearly we do need to be putting our own oxygen masks on first here, because (how's that go?) If Momma ain't happy, ain't NO ONE happy. Or so it turns out.
This should resolve any residual guilt we might have lingering around about taking it slow for the day if we need to, taking the extra time or spending the extra nickel to do things in the least stressful way we can arrange.
From the book review, I think the term "caregiver" is also referring to caregivers in residential settings. They too face challenges to not be in a hurry and not stressed. My impression after reading the book review is that the book was written as a text for nurses and care aids (hence the higher price). But I imagine it has some practical suggestions for those who are caregivers in their own homes.
I'd be interested in reading the book. My hubby still reads----a lot----and seems to comprehend most of his reading okay. I find though he has a harder time interpreting and applying info he's read (if it's non fiction). Tends to read something as "true" without looking at other perspectives. He is not as verbally communicative as he used to be . . . and seems to be more challenged to follow (and participate in) a group discussion. Ditto for listening to a speaker. So I found the article interesting because maybe his comprehension of something spoken is weakening faster than his ability to read.
For awhile he checked my schedule calendar quite regularly to "know" what was going on each day. If I told him, he'd forget but the written cues seemed to help. He's never been overly fond of "to-do" lists but now if I write something down (only 1 or 2 "to do" things) he is more likely to follow through than if I ask him verbally to do something. He usually forgets the latter completely. Ditto with instructions----he can manage written ones much better than verbal explanations.
I think you're correct, Rachelle, about the emphasis in this work being on patients in facility care. But I am interested in finding out more about her ideas for written cues, because I think it might be quite useful around our house at times.
When my grandmother was in the early stages and would stay with my parents for a couple weeks or so, my mom would leave a hand-made placard on her dresser saying something like: "Today is November 22, 1990. You are at Gale and Joe's house."
So far I've only used notes such as "Close this door. No cat." Or "No Wet Washcloths on this Shelf." What I seem to be getting to the point of needing are nametags to quickly stick on family members as they come in the door, as he has failed to recognize his brother and sister a couple times. Not sure I'd really do that, but something.
Yes, Emily, if I had to pick one thing that is the worst about this whole mess is the lack of control over what is happening/going to happen in our lives. From the moment of dx (unless one is a believer in a miracle cure being discovered within the patient's lifetime) you know your LO is going to die and there's not a darn thing you can do about it. Sure, there's the theory that good care can slow the disease process down (if that's a comfort to you); but as soon as you enter the phase where it's not safe to leave the person with dementia alone, things aren't under your control. Even if you have the resources to hire help or use adult daycare, your life is dependent on others to relieve you of the job for any period of time. Incidents at daycare, aides getting sick or having car trouble, all can play havoc even with any respite you may get. So knowing that in some way, I may have the ability to provide my husband with a good life in spite of the odds, is reassuring. I will take any shred of control over our lives that I can get!
Betty--I agree that expecting caregivers not to EVER be stressed or in a hurry is, once again, putting an additional burden on them and not very realistic. However, my experience has been that developing some acting skills has really paid off. It's just not worth it to express any sadness, stress or frustration around my husband unless I can convince him he is not the source of it. He asks "Is it my fault?" and I'd better answer no; then he is sweet and tries to console me. In the beginning I used to let him know when he had upset me--the results weren't pretty.
Marilyn, you are so right. I used to tell him when he upset me - no more! I don't even tell him when I'm not feeling good, because he really gets upset. Probably thinks he is going to lose me - he worries about that a lot. I just try to keep the stress level down as much as possible - for both of us. Works better that way.
So far, hb ignores, gets angry or just tosses any notes I write in the trash. I bought a digital clock that has month, day, year and digital time so he'd know the day, but he doesn't always look at it. If I show any sign of stress, frustration, unhappiness or, heaven forbid, anger, he gets very angry with me. This is nothing new, really, he's never been a comforter or caring hb. Son-in-law and grandson-in-law stayed w/hb yesterday afternoon so I could attend a baby shower for granddaughter. It wasn't relaxing or respite--too many people, and most I didn't know. Everyone was pleasant and friendly to me, but I'd as soon have been alone--ungrateful wretch that I am. It was good to share the happy occasion w/granddaughter, tho'.
I take hb to a care group for 2 1/2 hrs a wk where he does art and other activities. There are 5-6 men in the group. None of them ask their wives what they do during this time.
It's funny, when I tell my husband I'm not feeling well, he goes into his old "caregiver" role and tries to comfort me. So I have even used this when he is grouchy, telling him I have a headache, etc., and it gets his attention off what is bothering him and onto me (in a good way). I guess we all have to figure out how to present things in a way that will get the response we want.
The communication "books" are the major part of the study we are part of at our Med school...this one is working with aphasia, and we have two communication boards that are made up of pictures I have selected from various parts of our life past and present. The person working with us comes once a week, and we use the boards various ways to find the most effective method. My husband keeps them by his chair all the time and uses them for cues daily. A really wonderful study and it is working for us and others i have spoken with.
I forwarded the link to three women who lead hb's Brainbuilders group and his Circle of Art group as well as the support group I'm in when he's in Brainbuilders. Purdue speech and hearing grad students work w/hbs and their memory books at Brainbuilders. These leaders met Michelle Bourgeois when they attended a speech and hearing association meeting in Philiadelphia last Thurs-Sat. She's now at Ohio State University.
A book that might be helpful to some of you is Through the Seasons, an Activity Book for Memory Challenged Adults and Caregivers by Cynthia R. Green, Ph.D. and Joan Beloff, ACC, ALA. Published by the Johns Hopkins University Press (www.press.jhu.edu) Forest Pharmaceuticals, Inc. gave several copies to hb's neurologist, and she gave me a copy. Has large colorful seasonal pictures on one page and opposite page has comments and discussion guides--some questions. Hb doesn't care for too many questions. :)
Having started this, I feel a need to clarify. Over the 10 yrs I was DH's caregiver, I certainly tried everything. Notes worked in the beginning, later they were just an irritant to him. While we all go thru the same thing, it is different for everyone, depending on the LO, the CG, and the relationship before. I understand that many of these books are written for professionals and we can adapt the ideas to our own lives, but what set me off were words, something like, 'caregivers that are stressfree & not in a hurry.' I think I had it easier because it was only DH & me, children grown--they were helpful & supportive, and later I was able to have a helper 4 hrs/day a few days a week to help with bathing, & let me out for shopping, etc. Still, I was rarely stressfree, there is so much in our lives besides AD that must be attended to, and when I read about those with young children and so many other responsibilites, I just feel that too many 'experts' don't truly understand, unless they've lived it themselves. Bottom line, I am certainly grateful for all the research that is being done, I wouldn't want anyone to think otherwise.