DIMENSIONS Summer 2000

A CAREGIVER AND RESEARCH VOLUNTEER SPEAKS OUT

by Don Duckett

For Family Caregivers, Self-Advocacy is Essential

Have you ever dreamed of the day you would retire and do all of the things you could never do during your career? We did. I was 64 years old and my wife was 60. The year was 1996. This was to be was to be the beginning of all those plans we had been making for so long: the places we would go, the things we would see--all of the luxuries of retirement that you always dream of.

But alas, this was not to be. Agnes was diagnosed with a disease similar to Alzheimer's, very rare and only affecting specific parts of the brain. This disease is known as Pick's disease--often referred to as frontotemporal lobe dementia (FTD). Generally attacking its victims in their fifties, it lasts from two to ten years with death occurring usually in about five years after onset.

To my surprise, I was not the only person who had never heard of this disease. I don't believe too many people; medical researchers - family members - friends really understood the significance of such a disease: the pain and suffering that the victim must go through or the feeling of frustration, anger and isolation of the caregiver.

The disease of Pick's is extraordinary. It destroys its victim's memory, steals the ability to communicate, and renders one completely dependent on others. And the caregiver, charged with the responsibility to live for a loved one, almost always loses the ability to live for him or herself. The caregiver can do nothing to stop the progression of Pick's or Alzheimer's disease today. However, there are no limits on what we can do to help other caregivers and ourselves survive and heal from this experience.

Caregivers Are Not Alone

Like myself, most of the 540,000 caregivers in Washington state are so busy doing what they have to do--managing, struggling, stretching schedules and finances--that they don't realize they are caregivers. It took me about two years of dealing with the household activities and the other things which are done behind closed bedroom and bathroom doors before I came to the realization that, "Yes, I am a caregiver."

I found out about the National Family Caregivers Association (NFCA) through my daughter, who gave me my membership when Agnes was diagnosed in 1996. In March of 1998, I traveled to Bethesda, Maryland and Washington D.C. to advocate getting research funds for rare diseases such as Pick's. While there, I met with representatives at the National Institutes of Health, Senators Norm Dicks and Patty Murray, and also with the President of the NFCA. After returning home, I was offered, and accepted the volunteer position of coordinator for Washington State chapter of the NFCA. In so doing, I found that before I could advocate for other caregivers, I must be able to advocate for myself.

Self-advocacy is essential to healthy caregiving. If you don't advocate for your own well being, you can't sustain a positive, long-term caregiving relationship.

I am a long-time member of the NFCA and I firmly believe in the four principles of self-advocacy to live by:
a) Choose to take charge of your life
b) Love, honor and value yourself
c) Seek, accept, and at times, demand help
d) Stand up and be counted

Advocacy must start with understanding your own needs and taking care of them so that you can take care of another.

My responsibility as the NFCA state coordinator is to act as the advocate for other caregivers, heighten the awareness of local organizations to the needs of other family caregivers, suggest ways they can more adequately address the needs of caregivers, modify their practices to accommodate them, and focus resources to support caregivers. Finally, I work on a state and federal level to address those who make policy decisions affecting all of us.

I encourage every caregiver to embrace and live by the NFCA's four principles of self-advocacy.

Mr. Duckett and his wife participate in a UW research project on dementia and caregiving. He was instrumental in starting an all-male caregivers support group in Tacoma with the direction of the Alzheimer's Association of Western and Central Washington. He serves on the organizing committee for the annual caregiver conference in Fife, and hosts a male caregiver chat room on the Internet each week at www.webofcare.com.

For more information on the NFCA, see their web page at www.nfcacares.org.
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