This week we share with you a post by Stephen Hansen:
I am an occasional contributor to this blog, and Linda asked me to comment on a new book I have just published entitled “The times we aren’t as frequent – my Mother’s Alzheimer’s Journey.” I’d been working on this book ever since 1996 but had put it on the shelf for 28 years until this summer when I decided it was time I finished it!
My mom passed away of Alzheimer’s disease in August of 2000 at the age of 84. As my friend, Professor David Teplow from the Department of Neurology at UCLA pointed out in reviewing my book, nobody actually dies from Alzheimer’s disease, they die from ancillary causes that are a consequence of Alzheimer’s disease. But I take issue with that!
Imagine you are on a long hike in the wilderness. You become lost. All your supplies are gone. You haven’t eaten or had any water to drink for ten days straight! You are dying of thirst! Then a stranger passes by. He has a cup of ice chips in his hand! and a spoon! He offers you the ice chips. Because you are so weak from hunger and dehydration, the stranger sits down with you and tries to spoon feed you the ice chips. But you don’t swallow them or bite into them. The ice chips just dribble out of your mouth and off your lips. Then you silently pass away and die.
By August 2000 my mom had forgotten how to swallow. Or that there was any need to do so in the first place. Forgetting how to do a familiar task is called apraxia. It’s one of the so-called four horsemen of Alzheimer’s disease. My book describes my mom’s approximately 12 year journey through Alzheimer’s disease, this from the vantage point of a different Alzheimer’s horseman called aphasia, which means loss of language.
As was typical of people from the so called Greatest Generation, my mom was an avid correspondent and wrote letters to her children and siblings quite often. I’m the kind of person who never throws anything away and I had saved all my mom’s correspondence over the many years since I graduated from Arizona State University in Tempe and moved away from my parent’s Arizona home to Iowa and later to California. Her correspondence provides a window into her Alzheimer’s disease, through the progressive aphasia that becomes gradually apparent in her writing. My book, or I should say my mom’s book, chronicles her life with my dad in Phoenix and nearby Glendale, Arizona and the status of her written language function from 1966 through 1994, a period of approximately 28 years. Her letters span a time well before she first showed any symptoms of Alzheimer’s disease, through a period when her letters begin showing the aphasic changes of Alzheimer’s until her dementia became so advanced that her letters no longer made any sense. Even then, she was somehow able to address the envelopes, put on the correct postage and send them off in the mail!
In order for you to get to know my mom and the kind of person she was before she showed any symptoms of illness, I’m including one of my mom’s letters from the year 1986. This is near the end of the normal period before the symptoms of Alzheimer’s would begin to manifest themselves and change forever not only her life but my dad’s, my wife Karen’s and mine and all of her loved ones.
Letter #1 -Nov. 5th [1986]
Dear Steve & Karen,
Sure hope you passed your exam! You’ve always been able to come through a problem on a test at the last minute. Thanks for giving us Molly’s address and letting us know how well she is doing. I’m so glad that she has adapted so quickly, but not surprised. I’ll try to get letter off to her soon but seems like I’ve got too many projects going. We’re still working on our back yard and I’ve taken on the job of lawn “boy” which isn’t too difficult but takes a lot of time and I do get tired.
Charles is building an 8’ x 8’ tool shed, bunk-house, storage shed or whatever in the N.E. corner of our back yard. It will give him a lot more room for his power saws in the garage and room to work without stumbling over excess stuff. But both of us are well, just getting a little more tired than we like to be sometimes. And we went on an Itasca outing last weekend out on the desert near the San Tan mts. just north of Coolidge and south of Chandler, and probably going to another one next month at Wickenburg on Dec 5,6 & 7 as it is our annual Christmas party. They have a big community hall with a big kitchen and the ladies get together and cook up a storm, turkey and all the rest. We’d made reservations a year ago. Wickenburg is an interesting little town and we always enjoy it up there…
(remainder of letter is similar, noting events experienced or planned)
Keep in touch, Love, Mom & Dad
I need to point out that my mom, like most sufferers of Alzheimer’s disease, was never aware that she had any kind of dementia. But as I learned in the Alzheimer’s support groups I attended back in the 1990’s, denial often plays a part, at least in the early stages of Alzheimer’s. It was during a Christmas visit to their home in 1991 that my very proud and independent father finally asked for help regarding my mom, advising Karen and me that her memory was getting worse and that she had failed the written portion of her driver’s license exam three different times in 1991 before barely passing it with substantial tutoring from him.
He asked me if I would try to convince Mom to see a doctor about her condition. So I had a long talk with her over the kitchen table describing what her family was observing and that my dad, her husband of 51 years, who was sitting within earshot, was asking her to see a neurologist. My mom flatly refused, saying that she was simply getting old and that her memory was quite normal for someone who is age 76, and that her older brother “Bud” my Uncle Lester who was by then also showing mild symptoms of dementia was, as she put it, “much worse than I am.” I was about to suggest that her other brother, her oldest sibling, my Uncle Chester, had already died of Alzheimer’s disease in 1988, only three years prior, but reasoning with my mom seemed impossible, and my dad did not want to pursue the matter and possibly upset her. So we let it go.
It is in 1988 that we begin to see unmistakable signs of aphasia in Mom’s writing that portend the Alzheimer’s dementia that will ultimately take her life. During this period, the reader will note her letters start becoming shorter and less detailed. Her writing became less related to the world at large, and more centered on specific events and people she was close to. There was often repetition in her letters.
From 1988 onwards, my parent’s lives were starting to unravel due to the Alzheimer’s disease which was slowly ravaging her brain. During a family Christmas visit in 1989 my children as well as my brother’s family observed that grandma wasn’t fully ‘with it.’ Among other things, she hadn’t prepared nearly enough food for all the guests present. Her pantry, though not completely empty, was in no way adequate for a festive holiday get-together with family, reflecting a complete absence of holiday food planning and grocery shopping.
After my parents went to bed, the rest of us went out for pizza and dessert – not for holiday fun, but simply to avoid starving. By Christmas of 1989 it was clear to all of us, save possibly for my father, that my mom probably had Alzheimer’s Disease.
One of the reasons I thought this book would be important to people is to illustrate how Alzheimer’s disease can destroy not only the person who suffers from it but their spouses and loved ones as well. My dad died in 1992 at age 76. Although his cause of death was officially listed as Parkinson’s and diabetes, my book makes the case that it was also malnutrition and depression caused at least indirectly by mom’s Alzheimer’s disease.
By late 1991 records show that my mom had effectively stopped her normal grocery shopping and meal preparation, the trend that had begun about two years earlier. Although my dad occasionally liked to bake bread, when he felt up to it, he did little else in the kitchen. That was my mom’s ‘exclusive territory.’ Even worse. and throughout his life, my dad had always been a very fussy eater and depended on my mom for food preparation and grocery shopping. They seldom ate out at restaurants. Fast food was a concept that was simply unknown to them!
Besides having both severe Parkinson’s disease and diabetes, my dad was obviously suffering from depression, no doubt from seeing his spouse decline in such a devastating manner, which he never acknowledged or sought treatment for. A healthy man in my dad’s situation would have simply taken over food preparation in the kitchen or had meals delivered, but my father never took that step.
In March 1992 my dad collapsed on his back patio apparently from malnutrition and was transported to the hospital by ambulance. He never really recovered from that and died a few weeks later. Shortly afterward In 1992 we moved my mom to California to live with us following my dad’s death. Getting my mom to agree to do that is a story in itself!
The next letter is from late 1992, an unsent draft that helps explain the title of my book.
Letter #2 – undated – sometime in late 1992
Dear Dorothy & John,
The times we aren’t as frequent as I’d like to be {think} of you often, but I can’t because I am living here in California with Steve and Karen and they do take care of me. Sometimes I have to adjust when Karen is a school teacher and she comes home late sometimes and Steve has most of his work, too. But I try very hard {and sometimes, or} often {they tell me} not to see too much outside, so many cars!
My mom lived with Karen and me for almost two years. Karen and I had always been a two income family. We were still putting our youngest through college, still paying off our mortgage and I was unable to continue working as a self employed consulting engineer which often involved travel away from home. Meanwhile my mom could not be left safely at home alone. In late 1993 we decided to move Mom to the Four Seasons Board and Care facility in Thousand Oaks. The Sancho family and the owner of Four Seasons, Marinette Sancho, provided her with a safe and loving home environment where she would spend the rest of her life.
The last letter in my book and the last letter my mom would ever be able to write and post in the U.S. mail is included below.
Letter # 3 – postmarked 29 Jul, 1994
Dear Jon,
The westerd is in hot summer, but it’s getting cool. This is beuton when you see this Jon when I saw to the best place a couldn’t any more! It’s is just wonderful, with this – it’s lovely!
Love, Marguerite
From 1993 onward we visited Mom quite often, taking her out for visits to the local parks, especially Conejo Creek North with its beautiful walking paths, playgrounds for kids and the large duck pond. My mom even continued attending the Fitzgerald Senior (day care) Center for several months after she moved to Four Seasons. But all life’s journeys must come to an end. In early August 2000, Marinette from Four Seasons informed us that my mom had stopped eating and taking nourishment and could no longer be cared for at Four Seasons. So we moved Mom back with us to Hospice care in our Agoura Hills home until she died peacefully about ten days later, with me sitting next to her, holding the cup of ice chips.
Note on my publishing process: I ended up being able to do everything myself using the Kindle Direct Publishing platform on Amazon or KDP. The good thing about KDP is that there are no upfront costs whatsoever. No expensive software to buy, no inventory needed , no anything. Authors can use a free word processing tool like Google Docs to compose their work which is then exported as a PDF format manuscript file which KDP needs for publishing on paper. If you have an e-book you’d like to publish, KDP needs the manuscript file to be in the EPUB format. Google Docs supports the EPUB format as well, but in my case I used MS Word to generate the EPUB manuscript file for the e-book edition of my book. Once you have created your manuscript and cover art, simply create an account on KDP and follow the yellow brick road! The KDP platform is very interactive and guides the author through each step. It is designed to help independent authors like me publish their books! Easy peasy!
For those who may be interested in buying my book, it is available on Amazon in both hardcover and softcover editions as well as an e-book version on Kindle. This synopsis is extracted from the book talk that I presented at the Thousand Oaks Goebel Adult Center on Tuesday, Nov 19, 2024.