04.12.08
My Comments on Dancing with Rose
This week I finished a book called, Dancing with Rose, finding life in the land of Alzheimer’s by Lauren Kessler. The author, Lauren Kessler, writes of her experience with Alzheimer’s through her mother, and then from her experiences working temporarily as an RA (resident assistant) in an Alzheimer’s boarding care facility she called Maplewood. I have to admit that I have mixed feelings on this book. I very much enjoyed her stories and her insights as well as her new-found understanding of the “people” with Alzheimer’s. I stress “people” because one point Kessler makes, which I feel is a very valid observation, is that our society, in general, sweeps the elderly in the background especially when they become sickly and burdensome. There is a tendency to think of Alzheimer patients as if they are no longer fully living. With 5.2 million Americans suffering from Alzheimers, that’s a lot of people who need caretakers. But with the way our society is set up where both husband and wife must work jobs to support the family, the elderly suffering from severe mental and physical disabilities are relegated to boarding facilities away from home.
So what do I like about Dancing with Rose? From Kessler’s descriptions of what she had to do to take care of these people with Alzheimer’s and how different they all were was edifying to me. I think seeing what they go through helps me to have less fear and more patience for those who have lost full mental capacity. Since my illness with AA in 1999, I have had a much different outlook on people, yet since AA didn’t affect my mental capacity, I never really spent much time studying the mind or how it works. Trying to figure out and understand people with supposedly “normal” mental capacity, at times, is challenging in itself, but when someone loses that, it can be very frustrating as well as intimidating. Fortunately, no one in my family as of yet has had Alzheimer’s, although I do know other people who’s families have been affected. Strangely, according to Kessler’s book, more women are affected than men, but the few people I know of are all men. And after reading this book, I actually feel less afraid to see these guys again. Previously, I would feel so uncomfortable, that I would just stay away, but now I realize that I should not be afraid, and also not assume that they are totally gone. Understanding a bit more of the disease process helps to make me more compassionate and patient.
Another point well-taken from Kessler is that so much research is done regarding the biological workings of Alzheimer’s, but virtually no funding and research for how to live with and manage Alzheimer’s patients. There was a time when it was believed that one should not go along with any delusions an Alzheimer’s patient was experiencing, and just continually correct the patient when he was not grounded in reality. More recently, they have found that continual correction aggravates the patient more than helps, so now it’s not looked down upon to go along with whatever delusion the Alzheimer patient is experiencing. Kessler explains it nicely that it is the “person” that is important, and not that that person is off in a delusional world. So keeping the patient relaxed and comfortable is more important that continual correction to the point of aggravation. That made a lot of sense to me.
Kessler’s comment of her observations regarding Alzheimer medications is that they don’t seem to make any significant improvements in the patients, and that sometimes they seem to go down hill faster. That information seems to validate what Russell Blaylock wrote in his book Excitotoxins, the Taste that Kills. Blaylock’s explanation, if I recall correctly, is that the Alzheimer medications speed up decline because what they do is speed up synapsis, which translates into using up reserves faster and thus depleting it faster. An easy way to look at it is like a bank account. If there is no more deposits being made into the account, the faster you make withdrawals, the faster you’ll get to a zero balance.
This brings me to one of the things I didn’t like about Dancing with Rose, and that is there is no mention of alternative means. Instead, the message I seemed to feel was basically, accept the disease for what it is and even welcome it as there was even suggestion that Alzheimer’s may actually be a state of Zen Enlightenment because the patient loses all their inhibitions and is free to be whatever they feel like. To me that analogy is a bit reaching. I can understand why she and the doctor she interviewed might think that, but if that’s what Zen Enlightenment is all about, leave me out. I prefer to be able to feed myself and wipe my own butt, thank you.
Dancing with Rose was published in 2007, and as I mentioned, there was no mention of alternative treatments, but rather only comments that Alzheimer’s is still surrounded by mystery and that there is no cure. However, I have read a book called, Beating Alzheimer’s, a Step Towards Unlocking the Mysteries of Brain Diseases by Tom Warren. Warren’s book was published in 1991, sixteen “years” before Dancing with Rose. Warren’s book is about how he cured himself of Alzheimer’s naturally. To know that the rate of Alzheimer’s continues to climb and that there are millions of people around the world suffering from this disease, it is a shame that there is no mention of Tom Warren’s experiences and knowledge.
Overall, I did enjoy reading Dancing with Rose. I did learn quite a bit from it as well. So while I don’t fully agree with some of Kessler’s philosophy on the disease of Alzheimer’s, I do think the book is a good read, and even enlightening. She not only exposes what it’s like to care for various stages of Alzheimer’s, but she also exposes the experiences of the caretakers and the RAs who work with Alzheimer’s patients.
I’m finding it personally interesting that I have never been much interested in psychology, yet more recently I have found the topic of Alzheimer’s and the mental frame of mind of war veterans captivating. The next book I’ve started to read is called Death March, the Survivors of Bataan by Donald Knox. I remember hearing about shell shock and post war mental trauma, but after reading their circumstances, I can see why it happens. The curious thing is why does it happen to some, but not to others? Well, I’m started to deviate to another topic, so will hold off until I finish the next book.
Marlakins
Andrea said,
April 13, 2008 at 10:25 am
Very enjoyable review, Marla. I read it with interest. My mil had Alzheimer’s for 13 years until she died in 2004. I remember needing to decide about what to do about her delusions, and I did decide to go along with them. It seemd to make her happier and I was able to talk her into stuff–like putting back something she had taken, thinking it was hers, if I put it in terms of her delusion. (”yes, that did belong to your mother, they’re just keeping it safe for you, you can pick it up later for your mom.”)
I too have puzzled about why alternatives don’t seem to make it into so many accounts of illness, when they have been so successful. Even your success with AA seems to me to be downplayed somewhat on the forum–not ignored completely, but not given the attention it seems to me it should merit.
I really don’t understand it.
Happy Sunday! Andrea
Administrator said,
April 13, 2008 at 8:16 pm
Hi Andrea:
Wow, so you’ve experienced Alzheimer’s, too? You’ve had your share of challenges, haven’t you?
I think Alzheimer’s patients and families have it a bit harder than if they were dealing with some other diseases because there is a tendency for people to think negatively towards mental illnesses. I guess because we are so conditioned to follow certain types of behavior that when we deviate from what’s “norm,” it’s a bit shocking to others. And for those of us who don’t want to stick out in the crowds, it’s even more frightening to think that you or your loved one would be doing weird things in public. I guess it’s the lack of control part that is so unsettling on top of the overall physical decline in a person. So it’s really feat to be able to find a place or way of dealing with an Alzheimer’s patient so that you are both respectful to the patient, and also so that you’re not so hard on yourself. I say that because Kessler wrote about how Alzheimer’s patients need so much care and “watching over.” Kessler wrote about how often times families try to take care of their family member with Alzheimer’s themselves, but then after a while it’s so exhausting that they can’t provide them with the care they need 24/7, so that’s why it’s so common for them to go to assisted living communities. So it’s not “always” the case that the elderly just get tucked away where no one can see them, but rather because it’s so hard to care for them without some help. It’s not like you can tell an Alzheimer patient something and expect them to remember it. They forget so quickly that you’ll likely have to repeat things over and over again, day after day in addition to having to feed, cloth, and toilet them. More work than taking care of a baby!
It’s considering stuff like that that I feel reading Kessler’s book helped me to sort out my feelings a bit more on the subject. By now I’ve learned that our bodies can do weird things! So it’d good to consider these things so that they don’t just spring up on us while we’re so unprepared. You know what I mean? Not that I’m preparing for Alzheimer’s, but it’s just something that I really knew so little about. I have a new-found appreciation for what the people I know of who are dealing with family members with Alzheimer’s are going through.
Regarding alternatives, yeah that’s a tough one. I was just going over a book called Preventing and Reversing Osteoporosis by Alan R. Gaby. On page 240 in a section called Conventional Medicine Resists New Ideas, Gaby writes this:
“So, if all of this seems so logical and promising, why is it that so few doctors are providing their patients with the kind of information we are discussing? Why is it that the average doctor is either totally unaware of this work or simply rejects it out of hand as “unproven”? While I can only guess at the reason for the resistance of the medical profession to nutritional and natural therapies, this attitude is certainly not new or unusual. As far back as the eighteenth century, when Sir James Lind discovered the cure for scurvy, his findings were ignored for fifty years. Today, things are often no better.”
I’ve read different articles that claim similar things, and even when there is good research out there, it takes a long time for it to become universal knowledge. One example is blood typing. They were transfusion blood before they understood about blood typing. Some people would die from the wrong typing, but they didn’t realize what the problem was. Landsteiner discovered blood compatibility (A, B, O system) about 20 years “before” the blood transfusion docs/techs started to pay attention to it.
As far as the patients ignoring or dismissing alternatives, that’s another story, ha! I do agree with you that at times I sense that my AA recovery is downplayed, too. But I also know that it’s not something everyone can do because it does take a lot of discipline and patience, and at times things did get scary. I also think that some people just don’t understand it and think that I did “nothing” and my AA just went away. I think in those situations, it might be helpful for those people to take an earnest interest and effort in learning about the body and nutrition. I think that’s another reason I’m finding these POW books so interesting because they had first hand experience in observing what happens to the body with improper nutrition. I’m sure there are other reasons intermingled in there, too like “trust” in the medical community and all. But I’ve learned to accept that and frankly, I’m just glad that I’m on this side at the moment. Thank God!
Take care!
Marla
patti said,
April 16, 2008 at 9:26 pm
Good post, Marla. My FIL had Alzheimers. His memory slowly got worse over a period of ten years but it was only the last two that they classified him as “Alzheimers.” We learned so much during that time. At the time, Aricept was a new drug that had just come out for Alz. By that point, dad had totally lost his mind. Taking that drug gave us an entire year of clarity with dad before it stopped working. I understand what you’re saying about the drugs and excitotoxins but I know for mom, who was caring for him, that year meant the world to her. If he was going to lose his mind anyway, it gave them time to do some things that needed to be done. She did try some natural stuff but, like most people, figured it wasn’t curable. Now that I know more, I’d probably try to do lots of natural stuff. But you work with what you have when you have it and that’s where she was at. Most people give up taking care of Alz. patients when they can’t sleep any longer or they require diapering, etc. Mom took care of dad until the very end. She promised him she wouldn’t put him in a home and she was going to kill herself taking care of him. And she did, literally. Six days before dad died she ended up putting him in an assisted living facility because she truly could not do it anymore. He was awake 24hrs a day just about and into everything. He died six days after going into that home. As far as we were concerned, she had done something most people wouldn’t even consider. And those six days in the home, she was there everyday with him. But it did allow her to get some much needed rest by that point.
We have a friend right now whose husband has Alz. and we’ve been helping her along the way with information. Forget natural, she’s too medical, but one thing that really got us was she put him in a home because she couldn’t live her life and take care of him. It makes me so mad! I look at what mom gave up and what she did (and she was taking care of Marie!) and it was because she was committed to dad. This guy does not need to be in a home yet and he keeps trying to get out. They are sedating him to keep him there and told her she shouldn’t visit so much because it upsets him! It makes my blood boil thinking about it. So far, we have not responded to that one because we haven’t figured out a nice way to say she’s making a huge mistake.
If the Lord ever sees fit to put us in this position I told Ron I would hire someone to come into our home and help me if that’s what we needed. I will not put him away from his home, his surroundings, his wife, etc. You are so right about the two family working thing and people not having the “time” to take care of the elderly. It’s so wrong. It’s something we really tried to show our kids in taking care of mom and dad. You do it because it’s part of “honoring thy father and mother.” Not because it’s easy or convenient. Ohhh, I’m gettin’ a little hot here.
Dad did some things that were so hard on mom but as we look back we laugh at them. One time dad told mom that if he weren’t married already he’d marry her because she was so nice and lovely.
Sweet, huh? They had one of those kitchens where you could walk all the way around it in a circle through the living room and family room then back to the kitchen. One day dad walked in the kitchen and said, “wait here, there’s a lady that looks just like you over there!” Then he ran the other direction back into the kitchen and told her that again about the “other woman.” Anyways, some stuff is really funny. Other stuff was not. He told her he’d shoot her one time while he was pointing the broom handle at her. Okay, it’s funny now, but it wasn’t then.
Andrea, we did what you did. We just played along with dad’s fantasies. At one point he showed Ron that he had $1500 cash in his pocket!! He had been taking it and hiding it because he was sure mom was trying to steal from him. Ron told him, “oh, that’s okay, dad. I’ll hide it for you and she won’t find it.” So we played right into his fantasies and he did much better then the times mom tried to convince him of “normal” things.
While I know mom wouldn’t change a thing in taking care of dad until the end, it did cost her life. It was then that the infection in her root canal let loose and we do think that started the whole MDS thing. She was dx just over a year after dad died.
I read a lot of books (and mom did) when dad was dx and I found them helpful. But most of what I read were stories people wrote about taking care of their parents. I think they helped us to figure out to handle dad best. Another well thought out post, Marla. How on earth do you find time to read all this stuff? The reading stack on my bedside is now over 18inches high. Oh my gosh!! I won’t get through it all until our next MH trip (sometime in ‘09).
Gotta jet.
patti