Coping With A Long Goodbye

 by Bill Sherrod, Managing Editor 

Dementia�s slow erosion of self devastates families.

Researching available resources early on is an important step towards preparing for the inevitable.

Nancy Reagan said it best. It really is a long, long goodbye. 

That�s how Mrs. Reagan described the 10 years she lived with husband Ronald Reagan�s Alzheimer�s disease.

And that�s how Cindy Adams sums up the loss of her mother, Sharon Rose Thomas Brock, to Pick�s disease, a regressive, fatal form of dementia similar to Alzheimer�s.

Cindy�s mother passed away June 8, 2005, more than eight years after the family first noticed her lapses in memory and behavioral oddities.

It was a devastating loss for the family, a family that had been the focal point of Sharon Brock�s life: husband Charlie, four daughters, a son, 11 grandchildren and two great-grandchildren. Especially later in her life, before she got sick, family was central to her being, according to her daughter Cindy. �Family was everything to mother. She was always there for us.�

More than Stress

�My father had a contracting business, and mother ran the office for him,� says Cindy, who is the advertising manager for Cooperative Living magazine. �We first noticed a lapse in her communication skills. She would leave out words in phone conversations with us. Then, we noticed she began forgetting things at work: She�d give my father the wrong address for a job, or misplace a check.�

For almost two years, Sharon�s family attributed the shifts in her behavior to having �too many things on her plate�; in general, life stress.

�The doctor said it was stress, but it seemed to get worse as time wore on,� says Cindy. �Then, she started getting lost. She went to visit her mother and couldn�t find her way back home. When she told us that had happened, we knew it was more than stress or just having too much on her mind.�

At that point, Cindy�s sister Elaine took Sharon to a neurological specialist, who initiated a series of tests that, after several anxious months, ended in October 1999 with the heartbreaking diagnosis of Pick�s disease.

�The doctor told us that Pick�s disease involves a rapid deterioration of the frontal lobe of the brain,� says Cindy. �He also told us about the symptoms and the probable progression of the disease, and that we should start taking steps immediately to take her driver�s license and get power of attorney for her.�

Thus began the long, sad trip that ended in Sharon�s death, a tragic eight-year journey of compounding loss. In the second year after her diagnosis, Sharon became depressed and began to withdraw from interaction with her family and friends. �We saw major changes in her personality,� says Cindy. �This was one of the hardest things to get used to, seeing mother change from an extrovert to an introvert.�

Yet, as the effects of the disease worsened, Cindy saw emerge the strength of her father�s commitment to his wife. �You don�t realize how special your parents� love for each other is until you are face-to-face with the realization that some horrible disease is stealing the life right out of one of them,� observes Cindy. �Our father amazed us with his compassion and strength, with his day-to-day caring for mother. Some of the things I remember most was the way she would ask the same question over and over, or keep pushing him to take her for a ride when he had just gotten back from driving her around, sometimes for hours.�

Over the course of time, Sharon lost her ability to express herself in normal, adult ways. Eventually, she lost the ability to speak coherently. But as this happened, she became increasingly childlike in her desire to touch, hug and hold onto her family, especially her children and grandchildren.

�She connected to us, her family, in a very basic way right up to the end,� says Cindy. �I could tell by the light in her eyes when I would greet her. Even though she couldn�t express herself verbally, she would light up.�

The last six months of Sharon�s terrible journey were the darkest, Cindy continues. �In February 2005, mother took a turn for the worse. She became violent with my father, stopped taking her medicine, and sometimes would try to bite us. All of this was behavior we�d never seen in my mother.� Near the end, Sharon lost even the ability to eat and tend to her most basic human needs and functions.

�We tried all the medications for dementia, with no appreciable effect.� Cindy notes. �I really felt like we began to lose her when they put her on haldol and then morphine. Still, through all the trips to the doctor�s office and the hospital, she�d grab my hand and hold onto it.�

When Sharon died on June 8, 2005, it was devastating for her family. Cindy says there�s no easy way to take the loss of a loved one, even when it comes at the end of so terrible a journey as the eight-year trip her family had just made.

Prepare in Advance

�The most important thing for any caregiver is to seek out the resources that are available, and do it as soon as you can. Don�t wait until you�re so caught up in providing the care that you can�t spare the time to research the possibilities. And don�t put all your faith in one doctor�s plan of treatment � it�s always good to get a second opinion.� Cindy says.

�The Alzheimer�s Association is a good starting point,� she adds. �They will send you information about facilities, home nurses and other services. Also, they have a hotline that was very helpful when I became distraught.

�Find out if there are adult day-care facilities near you that can provide respite care. Get medical power of attorney. Hospice can work with you for years, too,� she adds. �At the end of your loved one�s life, you want to be able to spend as much time as you can with them, rather than running around trying to find out what resources are available,� Cindy says. �Don�t be afraid to ask for help, and don�t be afraid to seek outside help. Explore the resources. Find out what professional help is out there, and don�t be afraid to accept it.� 

In looking back at this long, sad, eight-year journey, Cindy says, �From the beginning of my mother�s illness, I knew I�d lose her. I didn�t know when or how it would happen, but from the beginning I knew that I missed her already.�

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