It is definitely not a topic for lively dinner conversation. No one at a cocktail party with a glass of champagne in their hand will bring up the topic. Verboten…forbidden.
There was a time when the word “cancer” was off-limits. At best it was whispered, as was any phrase which described a child with mental impairment. We have come a long way since then. We are learning to face our demons.
Dementia is the “ugly duckling” of conditions. Why discuss a condition which cannot be cured? Why discuss it at all?
You and I have potentially very long-life spans. Our parents may live to be 90 or 100. This is a new phenomenon, with credit due to the amazing successes of medical research. This is a mixed blessing.
In Judaism we have another blessing: “May you live to one hundred and twenty ! ” “Ad mea v’esrim”.
Each time my hubby receives this benediction, I wince. When I respond inappropriately that I would be a one-hundred year old woman taking care of my one-hundred and twenty year old husband, people always have the same response: ”Oh, of course, we mean- with health and mental clarity.” There are a few people fortunate enough to live long healthy lives and remain mentally sharp. Just a few…
Dementia has many causes. It is not always limited to the elderly. There are the diseases of Parkinson’s, Alzheimer’s , frontal lobal dementia, and Lewy Bodies, which have many of the same issues. As I began writing about the topic, the letters began to flow into my mailbox:
“My mother had this condition.”
“My sister is suffering from this now.”
“My brilliant father cannot remember his grand-children…”
“Our walls are lined with the books my husband loved. He cannot remember any of them now.”
The film “The Father” staring Anthony Hopkins was recently released. It is probably his most challenging and exquisite acting role of his career. He is stellar in his portrayal of a man for whom aging has become a world of confusion and loneliness. It is a movie of great value as it attempts, probably for the first time ever, to cinematically portray what it must be like to have conflicting thoughts, memories and conclusions. The audience must come to realize that the difference scenes presented are inside the father’s mind. It is difficult for us to decide which is truth and which is fiction. Imagine how it must be for the sufferer of the condition.
The good news is that we are all living longer than generations before us. The bad news Is that with the aging process comes the increased chance that each of us may suffer from severe memory loss.
The World Health Organization estimates that around 55 million people worldwide have Dementia. It is expected to rise to 78 million in eight years-time. Most of us will have a family member plagued with this condition. Many of us will have parents or grandparents who will need our understanding and our care. If we extrapolate the impact of this disease on family and friends, we are looking at hundreds of millions of people who are touched by it. Most have no skills to help those they love with this condition.
We are all “the sum total of our experiences.”- Hubby used to say. There is the portion of our lives when we are in control and responsible for our choices and the quality of our life, and then regrettably, our ability for independence may be diminished through no fault of our own. It is all a part of our “life’s passage.”
“The Dementia Diary” is a series of short chapters which I have written – in order to reflect on the complicated life of the family member who cares for a loved one with Dementia. It may be one of your parents, caring for another… or a grandparent, aunt, uncle, or friend. They will not share with you the emotions, challenges, complicated decisions and extreme stress which they experience hourly. The Dementia Diary is a record of my journey caring for “Hubby.”
If someone you care about is exhibiting signs of increased memory loss, you are welcome to visit my new website: thedementiadiary.com .
With pathos and humor, I share the ongoing experience of caring for a loved one with Dementia. The incredible lessons that I have learned are revealed there. The resources I have found to be outstanding are available to anyone who wishes to visit the site.
If you know someone caring for a spouse with memory loss, this is an opportunity to peek into the world which they will never reveal. They don’t want to bother you.