After a bad run of days with DH, I can't help but wonder if this wasn't written in a vaccuum.... So I guess I (and all of you) just need to teach our spouses to wake up with a smile on their face every morning, which will fill our hearts with joy - and all of the sadness, frustration, and helplessness that we experience will evaporate into thin air...I'll get right on that.
I particularly love his advice for the Alzheimer's patient to "learn a new skill" - LOL! ... or to take a refresher course in a second language - LOL!
Mary...I just finished reading this article...and I say " Really?" also. Clearly he is speaking about the early stage of AD, when the person's memory and abilities haven't been affected as much as they will be in the next stages. So he says to enjoy this stage...many times the person or his spouse are not even aware that they have AD...and for one reason or another, they haven't even pursued that diagnosis! Also when he gives advice to the person who has been diagnosed with AD...I am not sure of the percentages here, but many times that person is not even aware of or cannot acknowledge that he (she) has this illness due to anosognosia. The article was way too limited in its scope. I agree with you that it was perhaps "written in a vacuum"...Does Mr. Zeisel have any firsthand knowledge of what it is like to have a loved one and care for a loved one with AD?
yeah...it's a little clueless where anything beyond early stages is concerned. The irony in the advice to take a refresher course is that it was exactly Jeff's attempts to take classes at the community college that revealed so many deficits. (Lost car in parking lot, repeatedly. Couldn't keep course materials straight. Couldn't learn a basic accounting formula, etc.)
But neither is he entirely off-base. I just think you have to read the article as directed at caregivers, not patients. It's really just another way of saying that we should try to take pleasure in the small things, because focusing on the big things is going to be crappy.
I still think Angie Dickinson's "oh sh*t" was more apropos. Still, if we can try not to wallow in the negative after that oh sh*t moment, we're doing ourselves a favor.
I just finished reading this article, and sorry to say, "really?" was not my first response. It was a little closer to Angie Dickinson's comment!
I would like the author of this article to spend the next ten years isolated with a loved one to care for (while he lost his life savings, his own health declined, and his heart broke in a thousand pieces), and then read his update on how he views Alzheimer's. Or maybe he should try to comfort a loved one whose heart was breaking after their diagnosis, and see how that made him feel. When you watch someone you love so much struggle with even the simplest daily activities, and see the pain and fear in their eyes, and then read claptrap like this about how we should be enjoying our lives, it just defies an adequate response.
Did you read the comments folks have left on his article? I think we should all write comments so he will know how we feel about what he's written! How are we supposed to take our LOs on cruises, to the movies and museums when we can't afford a sitter to run to the grocery store? he must think we are all independently wealthy with nothing to do but make the first ten years of AD a wonderful experience. And those with children still at home? Oh, yes, lets all go on a trip! Angie Dickinson still has my vote for most honest comment.
Enjoy the early stages of AD because the later stages are going to be so crappy...well this author has something to learn about the early stage. I think it is one of the most difficult times because we DON'T YET KNOW what the problems are and some of us mistake the problems as ours not our LO who is demonstrating the early phases.
Yes as the disease progresses it gets harder and more unhappy with each development but the early stage is no picnic. Learn a new skill when they can't recall the old ones? Get the loved one to take a refresher course when they can't figure out, once they get to the stop sign, which way to turn so they can get to class? Oh Please! Or to put yet one more tasker on the caregiver who is now shouldering the chores or duties once shared in addition to those already assigned? ( in the Marine Corps, we had an expression for the junior officer who was loaded with additional duties as well as his or her primary duty...it was called the SLJO..( Shitty Little Jobs Officer)...and as time goes on that term takes on a whole new meaning!)
I am of the opinion that unless someone has walked this walk, I don't care what their profession is and how much they THINK they know, they should shut up...Book learning is fine and dandy but until you live with this disease and all the complications, do not patronize those of us who are carrying the load by telling us what to do and how we should appreciate those little things that are still the same, as if we don't. We learn most of our new solutions from those who are in Alzheimrersville, who have walked the walk and found solutions to share that really mean something and can make a difference in the quality of our lives and that of our LO.
The second language thing can portend problems later too. My mom spoke German before she spoke English and in the later stages guess what she spoke..( dad would not let her teach us kids German..a post WWII thing and he didn't want her talking to us in a language he didn't understand). My dh spoke Spanish before he spoke English and I better brush up on some basic Spanish just in case.... yet one more task to take on....( shoulders slumping now)...
I think that it's just a poorly written article. He may be repackaging ideas from his book--essentially trying to promote his book. Some of his statements are very common in the current thinking on dementia care--i.e., the concept of captializing on the patient's remaining abilities and strengths. I think that's basically what his point is--don't think it's all doom and gloom from day 1, it's a long, many times slow, disease process. So the patient will be able to continue to enjoy things like going to museums, etc., for a while.
I think the glaring flaw in the article is that he doesn't really discuss that a dementia dx devastates the lives of the patient and family, emotionally. So in a practical sense, it's pretty difficult to say "oh well" and just relax and go off on a cruise, for example. We did take several cruises and other trips while my hb was in the early stage. He may have enjoyed them, but let me tell you--it was nothing like our pre-dx travel for me! This guy's approach is just too simplistic.
I think this article is definitely a little too "Pollyanna" for my taste. My husband is in the early stages and there are many things he still enjoys, especially music, and thankfully he can still play the saxophone and continues to do so in a community band. However, as far as learning a new skill -- Zeisel has got to be kidding! Our toaster broke last week and after trying to show DH how to use the toaster oven three different times, I just gave up and found an identical toaster.
I know my husband is capable of enjoying what he knows and remembers from the past -- but if it's something new -- fuhgeddaboutit!! Usually one of the big clues in diagnosing AD is the inability of the individual to assimilate new information and skills. If there's anyone who's learning new skills, it's the spouses who are assuming all the responsibilities of the AD spouse, in addition to their own responsibilities. With that being said -- I guess I should get outside and finish cutting the grass -- UGH!!
personally reading something written by a person who has NOT lived with this disease as a caregiver is a loss of my time. i always wind up shaking my head at the simplistic anecdotes to complex issues and observations. the only real info that is of any consequence in my humble opinion is from real AD folks in the trenches and up to their elbows in AD. everything else just seems too sugarcoated and those of us who have been in 'alzheimersville' know its mostly hogwash. divvi
I saw this article too and I almost sent it but I just thought it was so obsured that it was a waste of our time. maryD, I agree with you that he should come here and take care of our spouses for 24 hours but I don't think it would do any good because he would just think he was right and we were wrong.
You can look up John Zeisel's bio--just Google. Having read it, it is my impression that he does have "experience" with Alzheimer's and families with Alzheimer's. However, his experience seems to be mostly in the professional realm, which means he goes home from it at night.
I am sure that if you're in the care facility industry, as he seems to be, it IS important to emphasize what people CAN do, and look at enjoyable activities for people with the illness and their family members. So, we have to keep in mind that that's the pov from which he writes.
We would probably have more patience with his outlook if we were day-workers at a memory unit, or part-time caregivers. But we're not, obviously, so we get all the good, the bad, and the ugly without respite, which gives one a much more jaundiced outlook than someone would have who deals with it as a career, but not as a full-time caregiver.
Interesting I posted a comment way earlier today and it does not appear - it seems to be stuck in the "Pending Comments" category. Maybe becuase I used the word "ignorant". Here was my comment:
"This is the most naive, utterly ridiculous article I have ever read on the subject of Alzheimer's. Anyone who has ever lived with an Alzheimer's patient will be ROTFL at this. Advising an AD patient to "learn a new skill" LOL! The author is totally ignorant - take it from me - my husband was diagnosed with MCI last year, which has now progressed to Alzheimer's I am sure. To suggest that one anecdotal story of a woman who woke every day with a smile on her face which filled her husband with joy, equates to the ability for all of us to live some fantasy of a fulfilling, rich, happy life - is utter nonsense. Sorry to disappoint, but I am afraid Alzheimer's is truly one disease which cannot be altered by a positive attitude. "
Mary..ignorant is the right word, whether they post it or not. But supposedly this joker has experience in the field. Where...down Alice's Rabbit Hole?
That is the problem with most Professionals who live in the Ivory Tower world of study and book learning but have no real practical experience dealing with the subjects in which they profess to be experts. Our neuro may not be taking care of anyone with this disease but he is smart enough to say " I have told my family if I ever come down with this disease, just put a pillow over my face. I will be a miserable patient. I know this about myself". At least he has insight because he deals daily with those of us who actually suffer along with our LO.
I say let's send authors like this back down a deep rabbit hole or gopher hole which ever is deeper.