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My precious bride of 32 years, Jan, was suddenly stricken with Alzheimer's Disease in 2020.  What caused her brain to short circuit? Was in genetics, environmental, an illness?  Who knows?  While many were trying to figure out how to work through the Covid pandemic, we were working our way through our own crisis of how Alzheimer's Disease was changing our lives. Life has been very different for us these last two years.  Jan's entire life changed. Many days she wonders why we live in a different house from where she used to live.  But what house does she remember?  The one we lived in for 18 years, the one we lived in when we were first married, or maybe a childhood home.  We just do not know.  But what we do know is that her life is lived in confusion and restlessness.  So much that she needs round the clock care.  She can never be left alone again. 

Caring for a loved one with any form of dementia can be exhausting.  I, a spouse of someone living with the horrible mind crippling disease of Alzheimer's, spend most of my days very tired.  I'm either providing the care solo or trying to manage a schedule of professional caregivers. A schedule that can change at any given moment.  I'm fortunate to have a great team but things change.  Life continues for them as well when these precious folks deal with illnesses themselves and their families. They may need to call off work for the day, have an unexpected family emergency that comes up, or just need a break from the arduous tasks of cooking, cleaning up after, and trying to calm someone who is unable to complete most of a day's activities.

Dementia sufferers want to tell you how they feel, what they want to eat that day, or join in conversation with you, but cannot.  The words don’t come easily from the broken neuron pathways in the patient’s brain. So, a caregiver must use their own mental agility to understand the needs of their charge. 

Besides being a 24/7 on-hands manager of care, I have my own health and sanity to consider.  All caregiving loved ones know that caring for yourself often gets pushed aside.  I used to be a very fit guy, even in my now mid 60s.  Two years ago I was training to complete a fifth Ironman competition when my wife's illness came on suddenly.  Obviously, my training and competition life changed.  I don't begrudge that by any means.  Caring for my bride, the love of my life, is more important. But I, like many a caregiving spouse, lose track of my own physical and mental needs.  We don't want to. It just happens.

Today, an estimated 50 million people worldwide are living with Alzheimer's or other dementias, including more than 6 million Americans. In the United States alone, more than 11 million friends, family members and professional caregivers are providing their care.  A nearly 2:1 ratio.  The cost for care of one with dementia does not come cheap.  I alone spend $13,000.00 a month caring for Jan, aside from daily living expenses.  She and I retired with a comfortable nest egg, but that is getting eaten up very quickly with professional caregiving expenses.

The 24/7 care, the mental and economic strains, and my own physical health are just a few of the many reasons why I am an advocate for care and finding a cure of these wretched diseases of the mind.  One day this terminal illness will take my bride's life.  On that day the whole world will hear me cry.  But my caring won't end with Jan's life.  I want to continue the fight by raising money to help find relief for the 6 million sufferers and 11 million caregivers.

None of the money I raise in my efforts to help find a cure or pharmaceutical development to help slow Alzheimer’s onset will go for my bride's care.  A hundred percent goes to the Alzheimer's Association.  I hope that you will join me in my efforts to fight this and the many dementias that plague so many people in America.

Terry Canipe

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