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The words in this book were forged in the fire of caregiving. Some- times the fire was red hot, other times the red coals were banked to an even heat. Often, the coals, worn gray, offered only small warmth. Whatever the level of heat, I wrote about our journey as things were happening, trying to capture the moment, trying to get me and now you, the reader, to feel something of the pain and joy of caring for someone you love whose memory is slipping away, and with it the close companionship of six decades.

The journey described in this book is not an easy, level walk into the sunset. It is more of a circling, downward spiral, repetitive each time around, but with slight, worrisome differences confirm- ing dementia’s progressive nature. It never gets better. There were, however, in our spiraling journey together, many beautiful, sweet times that offset the bitterness of it, meaningful memories which served to numb the pain, at least for a little while.

To get a better grasp of what is going on, it helps to have a full picture of our journey, not just the last few years. For this reason, I consider what I have written in Dementia: Love’s Bittersweet Journey as a complement to my previous book, Love Is Like That, which describes all 61 years of our married life. While each book stands alone, the two books belong together. I have used the same picture (Van Gogh’s Two Lovers) on the cover of both books to underscore their connection.

Most of us have read the figures. As many as six million people in this country are currently suffering from Alzheimer’s disease or some other form of dementia. The number of people with memory loss issues is expected to reach 16 million by the middle of the century. The need to understand dementia in all its devastating configurations has never been greater. Dementia: Love’s Bittersweet Journey is one step in that direction.

There’s much to be learned from following my journey with Joan but it is not an instruction manual. For specific guidance, one of the most practical books available is The 36-Hour Day by Mace and Rabins. Another helpful book is Alzheimer’s 911 by Frena Gray-Davidson. To gain understanding of dementia through the novel, none offers more insight than Still Alice by Lisa Genova.

Being a caregiver is both perilous and a privilege. It’s a privilege because you have the opportunity to express your love and con- cern for your beloved in a multitude of practical ways right through to the end. It’s perilous because you may become a victim of that love, putting your own health in jeopardy. My first warning of such a possibility was from a visiting nurse who told me, after visiting Joan, that I was in for a long haul. It was going to be arduous and demanding. In too many cases, she pointed out, the caregiver, vow- ing to carry on, has succumbed before the one being care for.

Blind as I was to my own limits, I wouldn’t, I couldn’t, believe her. As a result, I put Joan’s life in danger, too tired late one night to care what happened to her. Love of the beloved, I realized finally, doesn’t mean you have to do it all; that, in fact, others are quite capable of caring for your loved one with great skill and tenderness. The last lines of the poem Compassion’s Threat come to mind...“What’s the point, we ask, if in pursuit we lose our own way?/ Can it be that within compassion there lurk the seeds of our own destruction?/ Unless in reaching out we reach in, a compassion toward self,/ Love thy neighbor, left to linger over compassion’s red coals, soon dries up, putting life in peril./ Only with its counterpart, Love thy neighbor as thyself, is compassion seen whole, love made holy.”

9 thoughts on “Dementia: Love’s Bittersweet Journey”

  1. We thought you might like to know that yesterday afternoon I finished reading all 468 pages of “Dementia” aloud to Nancy!…. It was (is) compelling. What interested me as well was how anxious Nancy was to hear every word. As you know, she was diagnosed with modest cognitive impairment six, almost seven, years ago now, thus every stage was of special significance to her. We had been led to expect that the two strong Alzheimer drugs which were prescribed early on would help slow down the progress for three to five years but then she would “fall off a cliff”. Not yet, the progress not particularly noticeable except perhaps to me and possibly one or two of the children who see a lot of her. What your book did was to build an awareness of what may well be coming and set a standard of extraordinary caring for which to strive. We were also able to discuss options and what if’s. A tragic but beautiful story, Bob. You have provided a service for those who will listen.

  2. This book is a must read for anyone who loves a person suffering from dementia. It outlines the daily agony and hardship of caretaking as the loved one fades away. Sadness. Laughter. Suspense. Wisdom. It’s all there. I couldn’t put it down.

  3. After intending to take “just a peek” inside your compelling book, and finding such a “quick look” to be impossible, I read every page. What a valuable work this is! It illuminates a rare strength, unflagging determination, and loving devotion against a backdrop that is plaintive — yet open to hope and small joys wherever and whenever they arise. I have tremendous admiration for the skillful, compassionate and instinctive way you manoeuvred through the most profound of challenges.

  4. Thank you for your latest book! As a professional caregiver I am truly inspired reading Dementia: Love’s Bittersweet Journey…Your writing and giving of words, so true (and) from your very soul, is a gift.

  5. Robert Skeele’s Dementia: Love’s Bittersweet Journey is a story written journal-style of a man’s loss of his friend-lover-spouse through dementia. The journey is both an inner and an outer journey of letting go; of daily challenges being the caregiver; and the sorrow of hope’s loss. The author brings the reader inside his home and life detailing the daily routine of care for a spouse with dementia. There is a glimmer of what their life together must have been like before the dementia-a fleeting moment of recognition through intimacy. I was completely engaged in the story, looking forward to picking up where I left off during my morning and evening commute to work. The story prompted my own introspection and self-examination as I age. Thank you Mr. Skeele for sharing your experience so others will feel less isolated in their own bittersweet journey.

  6. Travel through the looking glass into a parallel universe where nothing is familiar and the only constant is change. It is the harrowing labyrinth known as dementia and it frequently defies the endurance of even the most dedicated caregiver. This journal is a testament to the abiding tenacity of faith, honour and dedication. In his book, Mr. Skeele has given us a clear vision into the depths of a human heart and shows us the true meaning of love.

  7. As long time friend of Bob and Joan, it provided a heart rending view of her gradual descent into dementia and his struggle to provide loving, and frustrating, care for his wife of 60 years. His careful account of that trip provides the reader with incredible insights about how demanding it is to stay engaged to the very end.

  8. The reader takes a ringside seat, a witness to the author being increasingly consumed by his efforts to shepherd his wife of 60 years thru the throes of dementia, as she clings to the fading amber of her own free will and humanity. A compelling book (read it in two sittings) interlaced with a surprising array of heart-felt poetry:… “there grief is/ an unwelcome passenger/ obviously well-fed…”

  9. I read about half of it (Dementia: Love’s Bittersweet Journey) the first night but had to stop when I came to the passage “There had to be a better ending to a decently lived life”. My heart and eyes were full of tears. It is a beautiful book and absolutely amazing… The poems in the book are magical. I especially enjoyed “If We Were Artists”, “The Year’s First Snow” and “Separation’s Grief”. Your book should be required reading for anyone going into care of dementia patients. I learned so much I did not know…

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