I kept thinking, what a difference it would have made to my own caregiving experience. How much less alone we would have felt.
Alzheimer's Reading Room
If you are, or have been, a caregiver for a loved one with dementia, you have probably heard of the well-known book, The 36 Hour Day.
In fact, you may have read the book yourself, assuming you were able to find time during your 36 hour day.
After my husband received this terrible diagnosis, our lives followed a trajectory that you will likely recognize.
He was only 63, and I was 56. For the first few years I fought this interloper with grim determination, reading everything I could about the disease. I could not and would not accept that my handsome, articulate, charming husband could die from Alzheimer’s disease.
If only I did everything right, I was sure I could keep him going so that he would not succumb to dementia but would ultimately die from something else.
Despite the excellent physicians, medications, activities, exercise, and healthy diet, my husband's dementia consumed him with a vengeance.
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Six years following his diagnosis I held him in my arms as he took his last breath at a skilled nursing home with hospice support.
I watched the kind and respectful willed body staff from Southwestern Medical School gently wrap his emaciated body in a beautiful velvet shroud. I followed them from his room to the parking lot and never saw him again. After all the years of striving, loving and grieving, I was no longer a caregiver.
The 36 hour day was done.
We had been married for 27 years, five months and four days. Everyone, including the doctors, told me in the most well-meaning way that it was time to start my new life. Having spent the previous six years in doctors offices and dementia care facilities, where my husband was invariably the youngest resident, this suggestion resonated with me about as well as you would expect.
When your loved one dies from dementia, your heart has already been broken multiple times before their actual, physical death. You have watched them die incrementally every day for months, then years. And just because the music stops doesn't mean you can find a chair.
I sought solace in my work, at church and at grief support meetings. But emotionally I still felt very much like my essence has been stolen from me, and what remained was a sad and silent emptiness.
I also found that one can appear to function very well in that state.
People told me I looked wonderful. Unfortunately, I felt anything but.
Blessed to be in a parish with a strong pastoral care focus, I attended training at the local Alzheimer's Association chapter to facilitate a monthly support group for caregivers of people with dementia. While the group never increased by more than a handful of people, the attendees bonded well, and we all learned from one another.
A year later I retired and relocated to my home town of St. Louis to be closer to family and childhood friends. After facilitating the church support group in Dallas, I realized I both wanted and needed more in-depth training in order to help others whose situations might well be different than mine, despite the commonalities. I contacted the local St. Louis Chapter and asked about volunteering on the telephone Helpline.
This was the first time in my adult life that I had not been employed full time. The prospect of this much unstructured time presented a challenge. Like most people, I looked forward to more discretionary time to pursue interests and enjoy my friends. But I was genuinely fearful of confronting that empty feeling, that still haunted me.
I wasn't the same person I’d been before my husband's illness, but who was I?
When friends asked me what I wanted to do, I wasn't sure myself.
The only certainty was that whatever I did would need to be focused on people and meaningful experiences. But if I worked with caregivers at the Alzheimer's Association, wouldn't it be too much of a reminder of what my husband and I had been through? Instead, I thought, maybe I should go on a cruise, join Match.com, and re-invent myself, as many of my peers were doing.
You don't know until you try, right?
So I started my first year of retirement working at the Association, doing computer research, data compilation and entry and familiarizing myself with the agency staff, programs, policies, etc. Then I received intensive training for the telephone Helpline, along with two terrific graduate social work students completing their academic practicum requirement.
One thing led to another, as it tends to do. I was permitted to sit in on an eight week program of educational and support meetings for people with early stage dementia and their caregivers, known as Project Esteem.
Throughout this course I kept thinking: If only something like this had been available to us during my husband's illness, what a difference it would have made to his feelings of worth and dignity and to my own caregiving experience. How much less alone we would have felt.
Since that time I have become a Project Esteem support group facilitator myself and serve on the Public Policy Committee for the Association, working on legislative advocacy at the state and federal level. Of course, I work weekly on the Helpline, attend ongoing training, and go on quarterly site visits with other volunteers to tour various long term care facilities and daycare centers in the area.
So how does it feel, all this contact with a disease that stole my husband and so much of my life?
Sounds kind of grim, doesn't it? In case you're wondering, here is what it is like:
When you walk into the office, you have arrived at the place where everyone gets it.
People not only know what you have been through but they also understand it.
Most of them, volunteers and staff alike, have had a similar experience. You don't have to explain. You don't have to pretend to be over it or that you are fine.
These people are my extended family now. In addition, I enjoy the intellectual challenge of constantly learning new skills and information, not to mention the socialization with others, all of whom UNDERSTAND.
Do I still have sad times and painful reminders? Yes, I do, and yes, you will.
Nothing and no one can take this experience away from you. It is part of who you are now. It is part of the essence I thought I had lost but was always within me.
I just needed to share it with others.
**Reprinted with author's permission from June 2014 Newsletter, Alzheimer's Association of St. Louis. Author requested her name be withheld.
Original content the Alzheimer's Reading Room