The article attached above is from a blog diary kept by Dotty’s son, Bob DeMarco, from the inception of Dotty’s diagnosis of Alzheimer’s to the end, which is very near almost nine years later.
Dementia care is a very high station in life. That’s what Bob DeMarco believes, and so do I. Dementia caregiving is one of the most difficult challenges anyone can face and not everyone excels at that task. Bob has indeed excelled and there are many of you for which the same can be said. I sincerely believe if you can get through that journey, you can handle just about anything life can throw at you. My caregiving journey with my father ended in 2007, so I am speaking from experience, not just with an educated opinion.
Is Alzheimer’s an automatic death sentence? Many in the medical community, including the Alzheimer’s Association, will declare that indeed it is a death sentence. I think one of the reasons why so many believe that to be the case is that at this point, there is no cure. There are no thoroughly effective medications or treatments that cure it or stop it in its tracks. A person gets an infection? A regimen of antibiotics is prescribed and poof – the infection goes away. Someone is diagnosed with a particular cancer – a treatment regimen is prescribed and as a result many cancer patients become former cancer patients. Not so with Alzheimer’s or other dementia.
There’s no such thing as a “former Alzheimer’s patient.” At this point, the only former Alzheimer’s patients are those who have passed on. If I interpret correctly what Bob DeMarco said in the above attached article I think he may be saying that if you start your Alzheimer’s/dementia journey convinced that the disease is a death sentence,those involved, especially the caregiver, might not work nearly hard enough to make the patient’s remaining life one that can be called a dignified, quality life.
“Surviving” a disease takes on an entirely new meaning. It sounds as though Bob set out to make sure that his mother, Dotty, had a quality of life that she was able to live for an extended period of time. For that reason he can confidently say the following: “We did survive. We are survivors.”
Well done Bob and Dotty. You are beautiful examples of how to be a survivor when the odds are stacked up against you.
It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge. A dementia diagnosis is SO difficult for everyone – including the one with the disease. I think this article is very well done and provides a perspective of which many need to be aware. Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away. Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.
A very moving story in the New York Times, When Illness makes a Spouse a Stranger, provides a moving testament, contained in an article and a video, of the commitment required when a spouse becomes a stranger.
When Michael French was diagnosed with frontotemporal dementia, his wife Ruth was told that the best way to describe this type of dementia is that the brain atrophies. This dementia is not like Alzheimer’s, the most common form of dementia. Frontotemporal dementia strikes younger people and progresses much faster than other dementia.
How does one continue to have a relationship with someone who has become a complete stranger, especially one’s spouse? Ruth says that what is left in their relationship is love – that’s all – and that’s enough for her right now.
This story, and the accompanying video, are very moving and somewhat intense, but very much worth viewing.
This will be a weekly feature that will provide just what all of us need on one of the most dreaded days of the week: MONDAY!
Marooned on a South Seas island, a man with a beard down to his knees is walking on the beach. Suddenly a beautiful woman emerges from the surf.
“Been here long?” she asks. “Since 1981,” he replies.
“How long has it been since you’ve had a cigarette?” “Eleven years.”
She unzips a pocket in the sleeve of her wet suit, pulls out a pack of Camels, lights one, and hands it to him. He inhales greedily.
“How long since you’ve had a drink of whiskey?” “Eleven years.”
She unzips the other sleeve and offers him a flask. He takes a long pull and looks at her adoringly.
“How long,” she asks coyly, “since you played around?” “Eleven years, ” he says wistfully.
She starts to unzip the front of her wet suit. “Gosh,” he says, “you got a set of golf clubs in there?”
It’s not often that we have the privilege of hearing from someone who has dementia, providing us who don’t have dementia, with some caregiving tips. Please take the time to listen to this person’s voice.
Alzheimer\’s Reading Room: Learning How to Use Alzheimer\’s World to Your Advantage. Please check out this link, as well as those that I offer in my commentary below.
The above link provides a great article about a woman caregiver who found success using the confusion of Alzheimer’s to her advantage. (For background information on the people referred to in that link please look at an article about a talking parrot who in essence was the Assistant Caregiver for Dotty, a delightful woman with Alzheimer’s.)
The Alzheimer’s Reading Room article posted at the top of this page mirrors my own thoughts as provided in my article: Honesty is NOT always the best policy. If you’ve never been faced with the communication struggles associated with caring for someone with Alzheimer’s or other dementia then you may be unnerved by the approaches offered in my article and the article linked at the top of this page. If you have been faced with those struggles, however, you’ll probably support any communication methods that make your caregiving job easier. The caregiver benefits, and the one being cared for receives the outcome of those benefits.
BOTTOM LINE: It’s all about entering the world of the person with Alzheimer’s, rather than trying to force them into yours.
This article is a delight to read. It describes one family member’s perception of having been “chosen” to be the caregiver for his grandmother. As a result of that choice, he developed a product that can be, and is, used widely in assisted living and dementia care units. What a terrific outcome for everyone!