Monthly Archives: April 2014

Chicken Soup for the Soul living with Alzheimer’s

From the story reprinted here, this book, which benefits the Alzheimer’s’ Society will also benefit those who read it, with its heart-warming stories of the survival of love and compassion.

And it might benefit the larger society, by showing the person beneath the disease, and how that person can be still present and lived with and loved.

With the enormous number of people (millions and millions) now struggling to live with Alzheimer’s, as patients or caregivers, I am beginning to think our biggest challenge is to make living with Alzheimer’s as normal as living with cancer. Forty or fifty years ago, cancer was only whispered about. Now people are open about their struggles, and so they get much social support, right down to classes of children shaving their heads to support friends undergoing chemo.

I wonder if that kind of acceptance (and understanding in society of how to behave with the patient) might help ease some of the heartache and fear we caregivers go through, so often alone?

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by | April 23, 2014 · 10:34 am

Blow Out!

So a few days ago….well, I blew – there is no other way to say it.

All the careful, intelligent, humorous caregiving just thrown out the window – kapow! We had had a couple of rather rocky days — including Don being edgy and not settling down, and an enticing invitation to return to some of my professional life as a toxics activist, and other personal stresses. Then my poor love asked the same question for about the 15oth time and….that was it.

I ran into the kitchen and threw a glass in the sink. I am still savouring how wonderful it felt — the sharp crack of the glass breaking. Marvellous. I don’t think I will take up throwing crockery, but I can see how very satisfying it is!

But with that crack came something inside me breaking too and I just stared to cry for hours and hours…. Frightening my love to no end – the next day when I was over it except for some swollen eyes, he came into the room and started to cry, saying he thought our relationship was over and I was going to throw him out. Not good at all. Poor guy. I think he is starting to get over it now, but that is real lesson to me. He has no way at all of interpreting my reactions, just like a little child.

Also I have had to do some serious work forgiving myself….made easier, perversely, by the fact that my love has not forgiven me at all, and goes around calling me Crazy Woman. Oh well, if it fits, wear it, hey!


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Love and Forgetting

Love and Forgetting: A husband and Wife’s Journey Through Dementia by Julie Macfie Sobol and Ken Sobol. (Toronto, Second Story Press, 2013.) Also available as an e-book.

The Sobols were not just a long-standing marriage, but a writing partnership as well, so when the disaster of dementia struck Ken, they bravely set out to write about it. Ken’s voice falls silent quite early in the story, and Julie has finished the book on her own. 

Ken was eventually diagnosed with Lewy Body Disease, the form of dementia second most common after Alzheimer’s. Many of the symptoms the Sobols describe, however, will ring true to observers of other dementias, although the Lewy Body symptoms are stronger. The horror of it is the paranoia and fear that Ken winds up living in. I think though that it is very easy for someone with Alz or vascular dementia to also be in terror much of the time, because they just cannot understand the world around them. 

There are so many poignant scenes in this account, and the Sobols have captured better than most the chaos and bewilderment of this on-going train wreck. Julie writes: “Chronic disease is an uninvited guest that moves into your house and then proceeds to act as if it’s the hose and you’re the guest. “I’ll set the rules,” the intruder tells you, standing in front of the door with arms folded tightly. “And please to remember there is no room for reasonable now, There is only ‘this is the way it is.”’ At another point she refers to it as “this shape-shifting tsunami of a disease.”

In the end, as Julie struggles with the home and community care system in Ontario (not that much different anywhere — over burdened and under-resourced, and not even really understanding what is going on out here in the homes of Canada), Julie writes about the core problem:

“If there was blame to be placed fro situations like this…it’s on our society as a whole. Science has artificially extended the human life span but society hasn’t yet faced head-on the consequences of that change. We don’t place enough value on caregiving in all its forms, professional and informal, and we refuse to question our Western obsession with extending life at any cost.”


She also touches on the mysterious benefits of this caregiving experience — “…the simple act of forcing yourself to slow down, working to find the emotional rhythm of the other person, can be beneficial….inviting us to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of the instinct.”

 In the Afterward, Julie adds some words of advice for health care professionals and I think they are sound, including getting family doctors to be more active in the inevitable education process that must happen, and giving more dementia seminars in medical and nursing schools and social work programs.

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