Have any of you read this book? I must be a failure as a caregiver, because there is no way I can see DH as an "interesting companion" or one who'd be interested in composing poetry that we could invite the family over to share. I feel that my job is pretty much 24/7 now without feeling as if I don't quite measure up in the "enriching his life" dept.
http://books.google.com/books?id=yKGldCEpzr8C&printsec=frontcover&dq=I'm+still+here&source=bl&ots=IuEUhynmdE&sig=1C8XSHa-YWViiZLdgtFaEJda6cQ&hl=en&ei=b1BhTLrrN4K78gbPyIiiCg&sa=X&oi=book_result&ct=result&resnum=14&ved=0CFYQ6AEwDQ#v=onepage&q&f=false Here is the link for the book. If the link doesn't work just Google it. The link is near the bottom of the page.
I haven't read the book. I sometimes wonder about people with dementia who write books or post on web sites. There is a form of MCI where the patient never gets any worse. Generally this is a stroke based vascular dementia. My husband didn't say my name for two years before he was placed, and I'm surprised when he tells them his name which he does from time to time.
Enriching their lives is worth doing in the early stages of the disease. I wish I had done more of it because in the early stages it helps hold off the symptoms. But sooner or later if it really is dementia (of an kind) the symptoms happen anyway, and the enrichment doesn't work anymore. My husband who was still taking 2 hour walks a year ago now is a fall risk in the nursing home. It is what it is.
I have not read the book, but I did read the synopsis given by Amazon, which still sounds to me like a lot of "care giving" work. It would not be fair of me to comment further without having read the book. For those who are interested, here is the synopsis:
Product Description A glass-half-full look at Alzheimer’s that reveals how to connect with someone through the fog of the disease.
As many as five million Americans are living with Alzheimer’s. The popular perception of the disease is that people who receive an Alzheimer’s diagnosis are lost to themselves and to those who love them—and that they have no future. But as John Zeisel, an innovator in nonpharmacological approaches to treating Alzheimer’s, makes clear in this book, this view is wrong. The disease often lasts ten to fifteen years—a time span that definitely constitutes a future. In I’m Still Here, Zeisel shows that during the course of Alzheimer’s, caregivers can have a vibrant and meaningful relationship with people who have the disease.
I’m Still Here focuses on connecting with individuals with Alzheimer’s through their abilities that don’t diminish with time, such as understanding music, art, facial expressions, and touch. Zeisel demonstrates that people who have the disease are highly creative and emotionally intelligent. By harnessing these capacities, and by using other approaches to treatment—such as building memory cues into their living environment, which encourages independent movement and helps eliminate sources of frustration—it’s possible to offer them a quality life with connection to others and to the world. About the Author John Zeisel is the president and cofounder of Hearthstone Alzheimer Care. He developed the Artists for Alzheimer’s™ program, which involves guided museum tours for people with the disease. He holds a Ph.D. in sociology from Columbia University, and has taught at Harvard, Yale, and McGill universities. His work has been covered in The New York Times; O, The Oprah Magazine; The Boston Globe; and on ABC, CNN, and the BBC.
If you are interested in purchasing the book, here is the link - http://astore.amazon.com/wwwthealzheim-20/detail/1583333355
PrisR, I think you are right on! I'm sure that there are valid ideas in this book, but your average caregiver doesn't have time to delve into "enriching our spouse". Like you said - our job is pretty much 24/7 & that leaves us precious little time to do other things.
I know my uncle got this kind of stimulation when he went daily to Opcia in LA. He came home with wonderful things he made..it released his creative juices and left my aunt with some real treasures. But if this author is suggesting that the already overloaded caregiver begin to include "home schooling" to use that term, to create and stimulate their environment I am afraid he does not know what he is talking about..he lives in the world of academics and needs to get out of his ivory tower, come down to earth and spend time with those of us who have real skin in the game.
Thanks...nice to know I'm not the only one who feels the way I do. I can't imagine what miracle activities could possible turn DH into the kind of person the author seems to think is always possible.
I wrote this in 2006, ideas about expert advice. Don't even get me started on what this man has to say, I'd rather take a nap. Note that his bio mentions lots of interesting things--being a 24/7 at home CG for years is not one of them. Of course, they could have forgotten to mention it, maybe they should use one of his 'memory cue' thingies.
‘EXPERT ADVICE'
You’ll have to excuse me while I roll on the floor laughing hysterically at some of the ‘expert’ advice given to people like me. ‘Experts’ go to school, study, learn from books, take tests, examine patients, get a job in a mental ward, fill in charts, spend years working with demented people and then write a book of advice—usually meant for others in the same field. The problem with professionals is that they go home after ten hours or so of work.
Patient meals are prepared and delivered by someone else. The shopping and kitchen clean up are done by others. Attendants take turns giving baths. Someone else changes linen and does the laundry. Others are busy supervising patient activities. Everyone gets a couple days off each week. Everyday responsibilities do not interfere with taking care of patients.
After work, on weekends, the ‘experts’ don’t have to worry about patient care. They can sleep, clean, cook, and shop; pay bills, do laundry and garden; be with family, talk on the phone, go to the movies, have a romantic interlude—because their demented patients are safely tucked away being cared for by other professionals. I didn’t live in that world.
I was on duty 24/7 and emotionally attached to my ‘patient’ like no professional ever could be. While I was trying to write checks, my husband would be shuffling the papers around; while I was folding laundry, he was unfolding it; while I was on the phone, I’d know he was up to something. When I was putting groceries away, he was putting lettuce in the microwave and my purse in the refrigerator; while I was in the shower, he’d be outside mucking around somewhere. And I couldn’t do everything while he was asleep because I needed to sleep, too.
I also read this advice in the paper—meant, no doubt, to make my life easier. In the kitchen, it directed, keep knives and cooking utensils locked up, put a lock on the refrigerator, freezer and pantry, keep all cleaning supplies locked away, take the knobs off the range and handles off the faucet; keep dishes and glasses locked up, keep all electrical appliances out of reach, well, you get the idea. It’s all good advice—NOW COOK DINNER! And remember, while you’re cooking, there’s a demented adult in the kitchen with you who’s helping by picking up knives, hot pans, and moving everything faster than you can possibly keep up with him.
Bathroom, same thing. Lock away all medications, grooming products, cosmetics, bath oils—then take a relaxing bath—while you suspect that somewhere your loved one is starting to repair something that doesn’t need to be repaired. And don’t forget all those dangerous things in the garage and garden shed. Did you lock them? Are you keeping track of all those keys? And where are those knobs?
‘Experts’ will always tell you that they understand how hard it is taking care of someone with dementia, but unless they’ve done it themselves 24/7 for years, they don’t know jack.
Yea, well, thanks for the advice, I’ll be sure to pass it along.
I've read the book and also am reading The Best Friends Approach to AD Care. I just spent the last 2 hrs. putting together a lawn sweeper he just had to have with hb looking over my shoulder and making negative comments and cussing like a sailor. I feel like duct taping his mouth and packing my bag. And they can put their books you know where!!!
I haven't read the book, but I didn't see anything in the description that Joan posted that the CAREGIVER needed to be the only person introducing these types of activities to their LO--did I miss something? I see this subject in relation to another issue--we are desperately in need of new kinds of programs, social clubs, etc. especially for the early stage patient. My husband stopped work at 59, a year before his dx, and there was literally nothing available in this area for anyone with early memory loss. He was too young for a traditional senior center; his friends all still were working. I spent 2 years entertaining him 24/7--if there had been anything available, such as an art program or museum tours for people with early memory loss, I would have been hugely grateful and it would have been a wonderful thing for him. I saw no other alternative but to put in him adult daycare at 61, when an early stage social program--if one had existed--would have been a much better fit. Perhaps this type of social program could implement the approach described in the book.
I don't know how many of you are familiar with Richard Taylor, who supposedly has AD and has been writing and going around the country speaking for many years now. I don't agree with everything he says, but one point he makes that rings true to me: not enough attention is being given to quality of life for those living with the disease. We caregivers need structured programs for the patients (preferably free or low cost) that are different from the current model. It will be interesting to see if when we baby boomers start being dx in droves with dementia, whether the system will change.
I tried every way in the world to entertain, stimulate, encourage (and many other nouns and verbs) my DW for the last 2 yrs before I placed her. All to no avail. In fact, it would turn out to be disappointing to me because, when I tried something, I anticipated results. She just got more and more agitated and beligerent. I realize it wasn't her fault. Just the progression of the disease.
Don't get me wrong. DH went to day care and it was great for him and for me, too, got some respite. Before it got to the later stages, I could take him places, be involved. I took advantage of whatever I could and always encourage others to do the same. Here, in Los Angeles, there are lots of appropriate things, no excuses, (I agree, not enough for younger people). But so much is to no avail, as Dean said. Such things make us feel better, we're doing something, keeping them involved in the real world, but any benefit the LO gets is fleeting at best. There comes a time when it just is what it is, the CG only has strength and time to be a caretaker performing the necessary daily tasks. I wish to God it was otherwise.
This topic made me think of the discussion I had with a lady in the laundromat here in the park yesterday. Her mom is mid 90s and according to her has had AD since her late 60s. She has done a lot of research and is convinced if you are highly intelligent, read, college educated, etc. - you will not get the disease. I tried telling her of all the occupations men in the facility with my FIL had done. She just didn't want to hear that because it would blow her theory. She is determined to keep her mind going so it doesn't happen to her. Don't get me wrong, she is nice, but she is convinced intelligence has something to do in determining who gets AD. Oh well!!!
I agree, the book appears to be from research/scholarly point of view, not hands on experience.
I did not read the blog on the benefits of Art therapy, but I do know my SIL attends day care at the Easter Seals and does art work. She enjoys it. My hb is not interested in it. If it were manly projects like woodworking or stuff, he might. Although he has gone around my sister's yard and stuff looking for stuff to clean up, repair and paint.
My wife has always enjoyed music, so this afternoon I took her to a concert here in our retirement inn by a string quartet from the local music school (Kneisel Hall). She seemed to sleep through most of it, but commented after that she enjoyed it.