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Monday, 17 August 2009

Dear William

[EDITORIAL NOTE: For the past few Mondays, William Weatherstone of The Diesel Gypsy blog as been writing a series of stories for The Elder Storytelling Place about caring for his wife who was recently diagnosed with Alzheimer's Disease. You can find links to those stories here. Today's story is in response to William.

By Jeanne Waite Follett

I find it difficult to read the words you write, not through any fault of yours, but because the sands of time have not yet erased the deep, heavy footprints I made while on that same journey. I am writing to tell you of some of the mistakes I made, and some of the small victories I had in the hope that you will find something in my experiences that will help you.

Two years after my husband was diagnosed with Alzheimer's Disease, I enrolled in a free caregiver’s course at my nearest AD resource center, a two hundred mile round trip drive. Soon into the class, we were instructed on how to administer the “toast test” to the patient and by watching how well or poorly the patient performed the test, we were able to estimate how advanced the disease was.

It’s requirements were simple: place an unplugged toaster, a plate, a loaf of bread, a container of flatware (knives, spoons, forks), butter and jam on the kitchen counter. Then ask the patient to make two slices toast, butter and jam them, and place them the plate. My husband started out well - even recognizing that the toaster was unplugged, but disintegrated midway through the test.

I checked the chart and rated him in early stage AD with forays into midstage AD. This was a monumental mistake, one I would not realize for a year, and one that caused me no end of problems.

By not realizing that his glass was indeed half empty rather than half full, I was always behind and always caught by surprise when some new facet of AD appeared - one that I was not expecting or prepared for.

Those windows of AD, when the patient reverts briefly to some previous state of accomplishment or cognizance? They are just that - windows. Like real windows, they slam shut. That is not where the patient is in the course of AD; the patient’s real measure is at their worst.

Once I learned and accepted this fact, I became a better caregiver. Thus, when my husband didn’t know my name one evening, or realize that I was his wife, it did not break my heart, but merely told me that the AD had progressed to that point.

A couple of chapters ago, you mentioned how irritating it was to you that your wife seemed to spy on you, or wake you when you were grabbing some precious sleep. Perhaps it is more that she is afraid, afraid of being alone and knowing that she cannot survive in a world she no longer recognizes.

Yes, the constant following and questions can be annoying. More than once I raised my voice to a perplexed man who once could do everything and anything with great skill. I am ashamed of those moments and have yet to forgive myself for my impatience. My only hope is that he soon forgot those incidents.

When incontinence first became a problem, I resorted to Depends, the elastic-waisted pull-on type, rather than the diaper style. When he began to forget where the bathroom was, I purchased some washable, inexpensive beige throw rugs, and made a light-colored pathway on our dark green bedroom carpet, so he could find the bathroom.

When he forgot what a toilet was, I lost even more sleep. AD patients are particularly susceptible to transitions in colors. If you have noticed your wife “high-stepping” from, say, a kitchen vinyl to a contrasting carpet, that is why.

Regarding your current problem of losing sleep because she gets out of bed, you can purchase a sleeping pad that sounds an alarm when pressure is taken off of it. This way, even if you are asleep, you will be alerted when she gets up. Medical supply stores can order them. They also carry shower benches and bedside commodes.

I also encourage you to invest in some small hinged door locks if you are concerned about her wandering. I can’t remember what they are called, but they mount high on a door frame and prevent a door from being opened unless the small section on the door is lifted and turned out of the way. They cost less than $5 each.

I was too hesitant to accept the help of friends and neighbors who offered to stay with him, too hesitant until I was a poster child for caregivers who do not take care of themselves. The lack of sleep exacerbated all the problems, brought on hot flashes that made me lose more sleep.

Only when I had medical emergencies of my own did I call on friends. Sometimes things went well, but other times, I could see the strain on their faces after only a couple hours with AD.

Finally, in the last few months he was at home, the National Family Caregiver’s Association was able to find someone willing to drive to my remote location and stay with him for eight hours, once a week. It was a life raft for a drowning person, and I accepted it willingly.

Long after I should have, I finally accepted that he belonged in an assisted living home and taken care of by people who are trained to do so. His first evening there, I watched two of the staff prepare him for bed in less than five minutes, a task that took me upwards of a half hour.

Because of the costs of homes in Alaska, I placed my husband in a home near Phoenix, close to where his grown children live. Did I feel as if I were abandoning him? Absolutely. But, his youngest girl gave me a gift when she said, “When he no longer knows you, it’s my turn to take care of him.” She was a frequent visitor at the home.

I hope the cousin is able to provide you with some respite. If you have anything you would like to ask, or just want to talk, please let me know. I will be out of town until late September and only occasionally in touch by e-mail.

I encourage you to continue writing about what is happening, and not only because there is great catharsis in writing. It’s as if spilling your problems onto paper cuts them down to a size you can manage and you feel you are not so overwhelmed. I tried, but was too tired and lost to continue.

And William? I want you to know there is life after Alzheimer’s - for you.

Jeanne Waite Follett

[EDITORIAL NOTE: All elders, 50 and older, are welcome to submit stories for this blog. They can be fiction, non-fiction, poetry, memoir, etc. Instructions for submitting are here.]

Posted by Ronni Bennett at 02:30 AM | Permalink | Email this post


A wonderful post. I plan to share it with several people I know who are dealing with this. If you haven't seen Pat Tomlinson's poem, "I Yelled at You Today," please do go to the archives and read it. Thanks for your lovely piece.

FWIW - My mom's dementia (ultimately diagnosed as Alzheimer's) was significantly slowed twice: the first time was with an antidepressant called Remeron. The second time, she responded to Namenda.

Thank you for writing this letter. I hope William finds comfort in it. So many of us were ill-prepared to take care of our Alzheimer and Dementia stricken loved ones. All of this sharing of experience goes a long way in healing broken hearts and strengthening the weary will.

I copied and sent this to a friend who is caring for her husband who has been diagnosed with Alzheimer's

Thank you for writing to William and your help will be beneficial to others as well.

She lives in Tucson and may want to know the name of the home in Phoenix where you placed your husband.

Thank you all for your comments. Ther is so much more I could tell William.

There are many, many affordable (a relative adjective, I know)homes in the Phoenix area. Ours was chosen because my step-daughter's in-laws recommended it, and we needed a home quickly. Ironically, the in-law's relative died and created an opening. I think there is an internet site that lists all the ALHs in the state. I will ask Ronni if it is appropriate to post the name of the one I chose.


Soon after beginning Namenda, my husband was once again able to answer our cordless telephone. The benefits of Namenda lasted only six months, which the neurologists at UCSF said they had found also. However, my husband had been hit with a double whammy. He had AD and another variant called AD dementia with Lewy bodies. This significantly increased the effects of the disease, as well as shortened his life span.

Again, along with Aricept and Exelson, Namenda delays but does not stop AD. There is hope on the horizon with some recent medical research break-throughs. The neurologists recommended Vitzmin E and folic acid, but pooh-poohed ginko as a waste of money.

Thank you so much for this.

Your post is going to help so many people and has no doubt helped many already since it
has now been up for more than 24 hours. In addition to those carrying the pain of now, the fear of someday is wrapped around so many of our hearts. Thank you so much for writing it.

"The fear of someday..." What a poignant phrase from Brenda's post above. Taking one day at a time, moving on, moving ahead, but always a little on tenterhooks, wondering where the next step will take you, whether you'll be ready. I also think often about Pat Tomlinson's wonderfully well-written piece, "I Yelled at You Today." These pieces have universal appeal.

We can relate to these comments!! My wife & I went to Bracebridge, Ontario in 1990 to visit my parents, not knowing my Frather was as sick as he was. We walked into the family home only to see my Father standing at the kitchen sink, looking out the window and talking to a dishcloth!! It really broke our hearts!! We knew he was ill, just not to what extent! My Mother, being a retired nurse, took very good care of him. Even though after 51 years of marriage, he had no idea just who Mom was. Just to make matters worse, he also had Parkinsons. Talk about a double whammy!!
We lost Dad in 1992, and we just hope and pray they find a cure for this awful disease. Our hearts and prayers go out to anyone afflicted with this terrible disease.
Brian & Lorraine McKay,
Midland, Ontario

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