Cynthia Dyer-Bennet (cdb) Mon 29 Oct 07 09:15
I'm honored to announce our next guest, author and journalist Lauren Kessler. Lauren's latest book -- "Dancing with Rose: Finding Life in the Land of Alzheimer's" -- is her first-hand account of working as a caregiver in an Alzheimer's facility. Lauren is also the author of four other works of narrative nonfiction: the Washington Post bestseller "Clever Girl," The Los Angeles Times bestseller "The Happy Bottom Riding Club," "Full Court Press" and "Stubborn Twig." "Stubborn Twig" was just chosen as the book for all Oregon to read in honor of the states 2009 sesquicentennial. Her journalism has appeared in The New York Times Magazine, Los Angeles Times Magazine, O magazine, newsweek.com, salon.com and The Nation. She is founder and editor of Etude, the online magazine of narrative nonfiction, and directs the graduate program in literary nonfiction at the University of Oregon. Joining Lauren to lead the conversation is Katherine Spinner. Katherine is a niece and aunt who lives in Seattle with two cats, too many books and a stash of knitting yarn. In June she moved her aunt, who has Alzheimer's, from assisted living into an adult family home. She has just moved her into a different home which has a locked yard. Katherine has worked in childcare and with adults who have cognitive and multiple other disabilities, fields that share the low status and low wages of eldercare.
Lauren Kessler (laurenkessler) Mon 29 Oct 07 10:17
Delighted to be here (a word that has little meaning in virtual conversation)...and ready to talk.
Katherine Spinner (spinner) Mon 29 Oct 07 12:24
Lauren,hello. "Dancing With Rose" comes at Alzheimers from 3 perspectives:your experience with your mother,your day to day experience with the residents of Maplewood (including your shift from the correcting mode to the validation model of responding to their confusion) and the working conditions for the caregivers at Maplewood.I'll begin this interview with a question about each of these areas. How are you feeling about your karma with respect to your mother these days?Are you currently involved directly with anyone who has Alzheimers?I wonder about whether the experience of caregiving after estrangement is different with Alzheimer's than with ailments that leave a parent's mind intact.Do you have any sense of this? You write about the medical aspects of Alzheimers,including the brain changes and the various drugs that are (very expensively) available to (possibly) address them.Does pressing for more research into diagnosis before autopsy,and more drugs,detract from working towards changes in care for people living with Alzheimers? My first question about your experience as a worker is not the deepest:I'm eager to know whether any of your former co-workers have read your book.Are you still in touch with anyone who is left from your time working at Maplewood?Have you heard from any former RAs?
Katherine Spinner (spinner) Tue 30 Oct 07 09:39
The second-to-last sentence above should read: Are you still in touch with anyone still working at Maplewood who is left from when you worked there? I imagine many of us would like to know about Eloise,too.
Lauren Kessler (laurenkessler) Tue 30 Oct 07 12:48
Many questions...all good. Let me take a stab at them, one by one. How are you feeling about your karma with respect to your mother these days? I feel now that I may not be coming back as a fruit fly or some sort of fungus. I am hoping perhaps for something mammalian. Seriously, my soul feels lighter after having had the opportunity -- I want to say privilege -- of being a daughter to other people's mothers...a better daughter than I was to my own. Are you currently involved directly with anyone who has Alzheimers? I am not sure about "directly," but I visit "Jane" at Maplewood. She is the last of the people I was close to still at the facility. I wonder about whether the experience of caregiving after estrangement is different with Alzheimer's than with ailments that leave a parent's mind intact.Do you have any sense of this? I am betting it is VERY different. My mother was not carrying any of the baggage of our past relationship with her into her last years. I was just someone who visited -- not her snotty, ill-behaved, errant daughter. On the one hand, that's a wonderful burden not to have to bear. On the other, it means no Hallmark Movie of the Week ending for us, no tearful rapproachment. It left the estrangement part firmly on my shoulders alone. Does pressing for more research into diagnosis before autopsy,and more drugs,detract from working towards changes in care for people living with Alzheimers? I would never ever want to say we should pull back from medical research. But I would say that we have 5 million people in the US with this disease, living with this disease, and we MUST pay attention to the kind of life they are living. We can and MUST learn from it...and deal with it -- even as we are trying to obliterate the disease. There can be no meaningful change in eldercare without reforming -- revolutionizing -- our health care system. Are you still in touch with anyone still working at Maplewood who is left from when you worked there? None of the RAs I worked with are still there. Neither are the administrator, the activity director, the care coordinator or the nurse. The hairdresser still is, though! (You'll just have to read what I say about her in the book.) As I already mentioned, "Jane" is the only person I was close to who is still at "Maplewood." "Eloise" died this spring. I had spent some time with her a few weeks before. She was very quiet by then.
Katherine Spinner (spinner) Tue 30 Oct 07 14:53
I would say we that if we have 5 million people in the US who have Alzheimers we probably have at least twice as many who are living with it as caregivers.Some are caring directly for a relative at home,others are one step removed from that but still under the stress of managing care and of the chronic grief that can go along with watching a loved one lose more and more pieces of mind and spirit. When you started working shifts at Maplewood,how did your relationships with the RAs change?Did the people you trained with know about your privelege of being able to pick your days and shifts? You described a staff meeting which was all about supervisors talking at RAs.How much of a difference might it make at a Maplewood if the direct care staff actually had some time to talk with each other?(Did people start getting their breaks when the float position became full-time?)Could anything short of a living wage improve morale to a point of reducing turnover? You did some reading on the validation model of talking with people who have Alzheimers,that is,not correcting their perceptions all the time but responding to them in ways that respect their experience:for instance,figuring out whether Marianne is at work or at a spa on any given day,rather than telling her where she is. Did any administrators at Maplewood ever mention this approach?It seems like some of the RAs came to it by trial and error,or by grace-I'm thinking of Cindy and the baby dolls.Are you aware of any institutions that practice the validation approach from the top down? I wonder how much we can hope to change the culture of eldercare without changing the working conditions of those who provide it.Do we need to fight as hard for a living minimum wage as we do when we advocate individually for our relatives?
Lauren Kessler (laurenkessler) Tue 30 Oct 07 20:24
When you started working shifts at Maplewood,how did your relationships with the RAs change?Did the people you trained with know about your privilege of being able to pick your days and shifts? Everyone knew I was a writer. Sometimes RAs from other units would come to me and say "I've gotta tell you what happened today. It would be great for your book." The fact that I was writing a book about the work they did made them feel valued, I think. But mostly, to tell the truth, it was a non-issue. What mattered was: Did I have their back? Could I be counted on in a tough situation? Was I strong enough to help lift a heavy person? After an initial fascination with the project, they just took me for granted. Jasmine, the RA I became closest to, certainly knew I could pick my days and shifts. I don't know why she wasn't resentful -- I probably would have been in her place -- but she wasn't. How much of a difference might it make at a Maplewood if the direct care staff actually had some time to talk with each other?(Did people start getting their breaks when the float position became full-time?)Could anything short of a living wage improve morale to a point of reducing turnover? I don't know the answer to these very good questions. The lives of the people who worked as RAs were so stressful... there was no much going on with housing and children and cars that broke down and no-good boyfriends... that it's hard to imagine the mental space (even with more time) to devote to brainstorming ways to make the facility better. A living wage -- and health insurance and paid sick days -- are, as you suggest, ESSENTIAL...although I have to say, in the absence of all that, the morale was actually amazingly high. Are you aware of any institutions that practice the validation approach from the top down? I didn't do that sort of research, so I don't know. I do know that many of the RAs I worked with and observed understood and practiced validation not because they'd read about it or gone to lectures (or heard about it at staff meetings) but because of their own innate, intuitive, nurturing way of interacting with the people in their care. I wonder how much we can hope to change the culture of eldercare without changing the working conditions of those who provide it. I don't wonder at all! I am CONVINCED we cannot change the culture of eldercare without changing: 1) our dismissive, impatient and basically disrespectful attitude toward elders (not OUR elders, of course...our own grandmas or aunts...but all those other codgers out there gumming up the works -- or so our culture seems to think) 2) our absurd, inhumane health care system and private insurance model that makes decent health care unaffordable to many, including the elderly. 3) and, finally, to your point: the way we SAY we value caregivers but don't...so yes, living wage, sick days, insurance, even, gasp, paid vacation.
Katherine Spinner (spinner) Tue 30 Oct 07 21:49
As it says in my bio,I just,one week ago today,moved my barmy old auntie out of an adult family home that she had walked away from twice into one with nice yard that is securely fenced.The weekday caregiver was very sad to see us leave,and sat in the living room quietly teary as Courtenay and I waited for our ride to the new house.One part of me thought,This is *not* helping and is *so* unprofessional! Then I thought,who in this field earns professional wages?then,is "professional",as in detached,do I want caregivers to be? At the new house,the owner is hoping to find a health plan she can afford for the caregivers at her 3 homes.I might not have liked her so well in her direct-care days,when her family lived in her first adult family home-she is not a particularly warm fuzzy person-but I'm delighted with her as the person in charge.My aunt is in the house she had purpose-built for an adult family home and the caregivers have an entirely separate upstairs to live in when they're not working.
Cynthia Dyer-Bennet (cdb) Wed 31 Oct 07 10:59
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Scott MacFarlane (s-macfarlane) Wed 31 Oct 07 11:59
Lauren, welcome, and thank you for immersing yourself in this important project (ala Norman Mailer as a war protester in "The Armies of the Night.") Do you make a distinction between "Dementia" and "Alzheimers"? Considering that there is no cure, both terms seem to be overlapping catchall medical categories for the precipitous decline of mental functioning, usually not occuring until those afflicted are in their late 60s at the earliest. If there is a difference between Alzheimers and Dementia, have you seen any difference in the way these patients are treated medically? I have noticed that the afflicted are segregated from other elderly, and, in the best cases, placed in a care situation where bodily needs are met, some basic mental and physical stimulation is given, but, as a practical matter, the patients spend their days witherinng exponentially towards death. Are there practical options for enhancing the quality of life of Alheimer's patients? Or, on the other hand, does heavy stimulation of those unable to process such stimulation, or even remember the experience, really make a difference to the patient's quality of life?
Lauren Kessler (laurenkessler) Wed 31 Oct 07 13:20
Thanks for your questions, Scott. I'll try to answer...but want to say that I am NOT a doctor. (Well, I have a Ph.D. in history, and anyone with a history sickness can come to me for diagnosis and treatment. Otherwise, forget it.) I am very comfortable answering questions about writing and craft, about how I did what I did, and why. But my knowledge about the disease, etc. comes only from the kind of research and reading a non-expert can do and, of course, my observations. That said... Do you make a distinction between "Dementia" and "Alzheimers"? The medical literature makes a distinction and often facilities make a distinction. I do too. It has nothing to do with cure or treatment -- since neither are options for whatever sort of dementia a person suffers from. Instead, it has to do with expected behaviors and how to "manage" people, what they need, etc. I should say that occasionally dementia-like symptoms can be caused by drug interactions -- with symptoms disappearing once the medications are discontinued or adjusted. Otherwise, take Alzheimer's versus what's called "vascular dementia" or something known (informally) as "alcohol-induced dementia." It's possible -- I've seen -- these sorts of dementias cause pretty severe memory problems...but often not the wandering issues or the personality changes of Alzheimer's. So thre is a real difference. Alzheimer's is definitely a disease unto itself, with its own etiology, its own identifiable brain changes, its own behaviors. Are there practical options for enhancing the quality of life of Alheimer's patients? ABSOLUTELY. I hope (and here's a plug...probably not the last) you and others will read my book, Dancing with Rose: Finding Life in the Land of Alzheimer's. You'll see some of those options at work. And you'll see how much life is left when you think there's no life at all.
Cynthia Dyer-Bennet (cdb) Thu 1 Nov 07 15:34
Thanks for your thorough responses to these questions, Lauren. I'd like to poke at one of them a bit, if you don't mind. My interest in the issues surrounding Alzheimer's/dementia and eldercare are personal. My mother has Alzheimer's, the first signs of it showed up fifteen years ago, and she's gone from being slightly impaired to near total dependence. Since late 2002, after her escalating needs made even 24/7 live-in care inadequate, she's been housed in care facilities designed to tend to her particular needs. I'm not your average family member who pops in for 20 minutes once a week. I have spend hundreds upon hundreds of hours hangin' out in these places. I've served meals, wiped dirty bottoms, comforted weeping residents, sat with the dying, and generally been deeply involved in the daily lives of all the residents where my mother lives. I say all this so you'll understand that I'm not all "let them eat cake" about this. I'm truly concerned about the caregivers' plight, yet I'm about as stretched as I can be, too. You say that caregivers need: > A living wage -- and health insurance and paid sick days I agree with you that they're badly paid and deserve better. The question I have is: where does that money come from? The cost of housing a dementia patient is steep. You quoted monthly rates at $4500 to $8000 in your book, and that matches my experience here in the greater SF Bay Area. In "Dancing With Rose" you mention that the administrators at Maplewood are earning what amounts to about $12 an hour. The floor staff is making minimum wage. Do you cut the administrators' wages to supplement that of the caregivers? Do you scrimp even more on the food budget? Get rid of the gardener and let the landscaping go to pot? Do you raise the monthly rate?
Katherine Spinner (spinner) Thu 1 Nov 07 15:48
How can we have economy of scale without building massive institutions?That is,how can administration be effective with larger groups of caregivers?The adult family home model around here seems to have one owner/administrator for 2 or 3 houses,and seem to have less turnover than Maplewoods,or than many child care centers.Of course,they also take only private-pay residents (some will convert to Medicare later on) which makes them inaccessible to most folks who are scraping by on minimum wage and will have proportional social security.
Scott MacFarlane (s-macfarlane) Thu 1 Nov 07 16:09
I'll order your book, Lauren, and hope I can read it before this on-line interview ends. I'm also a writer, so I guess I bring a similar approach to investigating Alzheimer's/Dementia. My brother is an M.D., so when both our father, who died two years ago, and our mother, who after he died, started her rapid decline, went for diagnosis/treatment, I was surprised how little help there was for either of them, especially pharmacologically. The medical criteria for diagnosis distinguishing Alzheimer's and the different types of dementia is also surprisingly muddy. All four of our grandparents lived to be approximately 90, so when both of our parents, who have very different personalities and hadn't been together as a couple since 1968, began deteriorating in their early to mid-70s, we were shocked. I have many questions, but one that intrigues me is the "use it or lose it" hypothesis, meaning, of course, that if we let our brain get lazy, Alzheimers or dementia will be more likely to occur. I'm 52, and for most of my life--by looking at the lifespan of my grandparents--I expected to live to be about 90. It's been a rude awakening to now look at both of my parents dying in their mid-70s (Mom is in a bad state of decline). Not that we can ever know, but I now wonder if I can reasonably expect to live for twenty more years or forty. As a writer, the idea that time may be short keeps me working, in part because I hope that the mental stimulation will serve as a preventive measure toward a similar affliction. With your mother having had Alzheimers, have you had similar thoughts for yourself as a writer? Also, what is your take on the "use it or lose it" concept?
Katherine Spinner (spinner) Thu 1 Nov 07 20:32
I am pretty much convinced that,except for early-onset,Alzheimers strikes at random:my aunt did all the things that may be protective,including playing Scrabble well into the progression of the disease. I wish there were as much work going on in improvement in quality of life for people with Alzheimers,and the multitude of relatives who care for them at home,as in studying brains. In her book,Lauren writes about one thing that makes life easier for people with Alzheimers:Caregivers can give up correcting them,trying to bring them into our reality.I suspect this is easier for non-family caregivers,who aren't grieving the person who used to be.But more information for families could be helpful.We could use a lot more groups for caregivers that meet in a place where their relative could be under someone else's care for a few hours. More readily available respite care could lengthen the time before we need to place people,or be placed ourselves,into the Maplewoods of eldercare.
Lauren Kessler (laurenkessler) Thu 1 Nov 07 21:52
To your comments and question first, Cynthia, which I'll rephrase simply as: Where does the money come from to pay caregivers a living wage? You ask... Do you cut the administrators' wages to supplement that of the caregivers? Do you scrimp even more on the food budget? Get rid of the gardener and let the landscaping go to pot? Do you raise the monthly rate? I say: None of the above. Eldercare is a $3 billion a year, booming, booming industry that rakes in enormous profits for the corporate chains that own and operate thousands of facilities. Businesses are entitled to make a profit. Yay, capitalism! They are not entitled to gouge the elderly and their families and to keep fulltime, hardworking (mostly) women living below the poverty line so that companies can earn obscene profits. End of rant.
Lauren Kessler (laurenkessler) Thu 1 Nov 07 21:57
I hear you, Katherine, about the economies of scale issue. My response is that we should not try to tinker with a bad system. We should not be thinking in terms of reform, of making what we have more efficient. We should be thinking revolution. I have some thoughts on that in a piece I wrote for the Sunday Oregonian (Oct. 28). There's a link to it on my website, www.laurenkessler.com.
Lauren Kessler (laurenkessler) Thu 1 Nov 07 22:06
Our experiences are similar, Scott. Three of my four grandparents lived into their 90s. I had a nonegenarian great grandmother, and a great-great, known as "Old Oldie" who lived to 102. I assumed my whole life that I'd follow in their footsteps. Then my mother died of Alzheimer's at 77. I just wrote about this -- the disconcerting feeling that you are next in line -- and I'd love you to read it and tell me what you think. It's in the autumn issue of Etude, an online journal of narrative nonfiction that I founded and edit. The essay is called "The Good News about Bad News." You can find it at: http://etude.uoregon.edu/autumn2007/craft/ And for the record, I DO believe in "use it or lose it" -- for the body, brain and soul.
Lauren Kessler (laurenkessler) Thu 1 Nov 07 22:11
Respite care! Absolutely, Katherine. Maplewood did a little of that...taking in a person or two for part of a day while the at-home caregiver had a breather, and I think you're right: It can make a HUGE difference for a 24/7 caregiver. About "validation" rather than "correction": It is SO very much harder to validate when it's your own family member. Yet, if you can just force yourself to, you will see what an enormous difference it can make in mood (both the other person and yours!) and the quality of the time together.
Scott MacFarlane (s-macfarlane) Thu 1 Nov 07 23:06
<< as I discovered in Dancing with Rose, there is real life, vibrant, quirky, intensely experienced life, lived by those who have Alzheimer's. We are very much more than the sum of our remembered pasts. It is not so bad to look this stuff right in the eye. Really.>> Nice piece, Lauren. I went to Seattle to see my Mom a week-and-a-half ago. Mom, who because of her hip replacement can't walk, was sitting in her usual place on the couch. Next to her seat is a large mirror. She saw me in the mirror and started to wave enthusiastically. I said, "Hey, Mom, it's me, over here." She kept waving in the mirror, before finally looking directly at me. "How was your trip?" she asked. I was amazed that she remembered that I had been gone for the first part of October. Then she introduced me to the other ladies in the home as her brother. "Well, I'm actually your son, Mom." "Oh, well, I'd be happy even if you were my brother," she added when I bent down to hug her. "And I'm happy to be your son." After a minute she looked back at the mirror and then at me and said, "it was so strange to see you out of the car window all of the sudden like that. It was like you appeared out of nowhere." Then she looked at the mirror again and back at me, a touch confused. "Oh, whenever that was when I was on that car ride." It's only been a year-and-a-half since we moved her from her condo to an independent-living care center, a year since we took the car keys. The precipitous decline came about six months ago just before we moved her to this adult home with five other women. Aside from a loss of motor skills in the ability of her mind to tell her legs to walk, my biggest question in her decline is this scrambling of memory. She remembered I was just on vacation, then thinks I'm her brother. To me, it seems as though the separation between her dream state and her waking state is deteriorated. The connections she makes are not unlike the odd associations we make when we're in our dream state. Do any of you know of any research that has gone on with Alzheimer's/Dementia from this angle of a blurring of our dream state and wakeful state?
Lauren Kessler (laurenkessler) Fri 2 Nov 07 10:49
That's such an interesting question, Scott, and such an astute observation. I am betting that very little (or no) research has been done in this area because researchers are not focused on understanding the experience of Alzheimer's. They are focused on finding its cause and cure. As I think I wrote earlier: Hooray! We ALL want a cure. But meanwhile, isn't there something to be, uh, LEARNED from this disease?? Your observation is a case in point. I like your notion of a blurring between waking and dream consciouness, especially if we think of this as a transition stage from life to death. I also think, maybe, it has to do with the way a cognitively impaired brain is still very smart. So your mother's brain is having problems making these chronological, logical connections. What is taking over from pure cognition is intuition and emotion. She is NOT confused about what you mean to her. She feels -- FEELS -- a closeness, a familiar (as in family) tie. That's the emotional, non-impaired part of her brain helping her connect with you. What do you think of this? btw...I love the story you told.
Cynthia Dyer-Bennet (cdb) Fri 2 Nov 07 11:19
Yes, that's a fascinating story about the mirror, Scott. My mom is much further along in terms of her condition. She can no longer communicate much verbally anymore, even in the disjointed, lost-in-time way you describe your mom's efforts. In fact, trying to have a conversation with her -- I mean a conversation like any of us would define it -- isn't possible anymore. However, there still are ways she and I can connect. As you note, Laura, with Alzheimer's the person no longer has a clear recollection about who's who, but the feeling of connection remains. One thing I find is hugely helpful is music. My mom continues to respond to music in a positive, happy way. Here's a video I shot of her about a year ago: http://www.youtube.com/watch?v=PFO74ok-23I The sound didn't sync up well when I uploaded it to youtube, and the lighting is poor so it's grainy, but you can still get a feel for how we can reach our demented loved ones using other means than back-and-forth conversation. What's been your experience with music, Lauren, as far as how your dementia residents at Maplewood responded to it?
Katherine Spinner (spinner) Fri 2 Nov 07 11:22
Lauren,I'm so glad you posted the link to your Oregonian piece,thank you.I would feel more optimistic about a revolution in eldercare if we had seen childcare improve,for non-middle class children and for their caregivers,during the years that boomers had children in day care. Scott,my aunt often says,when I appear,"I was dreaming that you were here!"She has also said several times,just lately(since she moved for the 2nd time in 4 months),"This all feels like a dream,not like it's real at all." She has said this when we were walking outside the locked fence of the adult family home.
Paula Span (pspan) Fri 2 Nov 07 12:25
Lauren, on the issue of entering the patient's reality, rather than trying to force people with Alzheimer's to be "oriented" -- I was struck by your description, in "Dancing with Rose" (lovely book, mazel tov), of elderly ladies with baby dolls, the way the dolls engaged them and even helped connect them to other residents. It's exactly the sort of solution that makes some of us Boomers uneasy because we somehow think it's paternalistic, not treating our seniors as Adults. Then, just today, I heard of some assisted living researchers and reformers introducing more Montessori-type activities for people with dementia -- residents playing with poker chips and using tongs to lift little balls in and out of ice cube trays. Do you think our well-intented but possibly misguided attempts to avoid treating people with Alzheimer's as if they were children may be backfiring? They'e NOT children -- but they may enjoy some of the activities and approaches that children enjoy. Maybe we should make our peace with that, and spread the word?
Paulina Borsook (loris) Fri 2 Nov 07 12:34
of course i have many abherrent opinions here --- but one of the things i took issue with, with the care my evil mother received for her dementia (she had a mixed diagnosis: alz/parkinsons/ vascular --- which we only found out was mostly wrong after an autopsy. turns out to be vascular all the way...but never mind) is that she never, as an functional adult, liked those montessori/crafty/singalong things. and she didnt like them any better as a demented person. it used to drive me nuts, to enter the nite-of-the-living-dead preschool that was the daytime dementia activity cent the fantasy here is to create activities for the demented that suit their individuality. with of course the zillions of dollars that are the peace divident (snort)
Lauren Kessler (laurenkessler) Fri 2 Nov 07 15:25
One other thing about a mirror image...a guy I interviewed for an LATimes story I wrote about Alzheimer's (before I wrote the book) told me this story: He was still caring for his wife at home. They got dressed up to go out to a concert -- more about MUSIC in a moment -- and, walking down the street at night, she caught a glimpse of herself in a storefront window. "THat woman looks really good," she told her husband. Now about MUSIC. I found that music was the core of communication and connection. It is why Rose and I danced. It was an everyday part of my relationship with the man I call Hayes in the book and was central to the connection I made with another resident. At the end of my book, I recount a scene with my mother, which was also about music. So, yes! yes!
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