By Roberta Bienenfeld
Special to Alzheimer's Weekly
Week of March 9 - March 15, 2008

Tracy Carlene Mobley, 44, has dared to continue dreaming six years after being diagnosed with Early Onset Alzheimer's Disease (EOAD).  Her dream: The establishment of a summer camp for teenagers whose parents have early Alzheimer's, a place where they can share problems with other teenage caregivers like themselves, a place for them to learn coping skills while having a fun summer camp experience, a place to be a kid like any other kid.

Tracy’s dream will become reality this summer when twelve teenagers, ages 13-16, children and grandchildren of dementia sufferers, will take part in a pilot program of Camp Building Bridges. For just a little while, they will be able to forget their problems and family situation and enjoy a sleep-away summer camp experience. The program, founded by the former nurse technician, will be held at the Camp Classen Campground in Davis, Oklahoma from July 6-12, 2008.

Camp Building Bridges is intended to "help teach teenage campers to build healthy relationships through the disease as well as educating them about what they need to know to not only help themselves but to help others as well." 

"For five years since my diagnosis," says Tracy, "we, as a family have gone to support groups, conferences, seminars, workshops, etc., but none of this involved kids. We, as adults, have ways and means through these resources of finding ways to help ourselves cope with the issues of the disease but our children are left with absolutely nothing. They have no form of support or understanding of the disease. I think it is time that we provide this service for kids that have a parent/grandparent with dementia to help them better cope. Many of these kids are currently already in the care giving role or will soon be and they need as much direction as possible."

Tracy Mobley was diagnosed with the disease when she was still in her thirties. "My husband was the first to see the changes," she says. "I was forgetting recent conversations, forgetting plans that we had made. The morning that I got up to get ready for work and looked out the window and stared for minutes trying to figure out where this strange dog had come from, trying to figure out why it was here and then being told by our then seven year old son that it was our dog, made me realize that there was something terribly wrong."

"Because of my age, it took two years to get a diagnosis," she remembers. "I went through a slew of doctors that included my primary, two neurologists, one neuro-psychologist, one psychiatrist and the Mayo Clinic in Rochester where I was given a baseline diagnosis of mild cognitive impairment. I was sent back home to find a new neurologist and six months later I was diagnosed with EOAD.

"Alzheimer's is the cruelest of all diseases that can exist," she says. "It has taken away our dreams of building a home, it ate up our savings, it took away our hopes and dreams of being an all-American family. It eats through your emotions and causes so much pain that at times it is almost unbearable but we have learned to deal with it as a family because we have each other. As a person with the disease from the emotional aspect I guess I am the lucky one because so much that happens I don't remember and the pain and ugliness, my family will have to remember for the rest of their lives.

"When we found out," she says, "we just drove around the block in circles for a brief time and I cried. But then we were relieved that we finally knew what was wrong. We had an answer and now we could get on with our lives however it may be."

Part of getting on with her life is contributing to society as much as she can. Camp Building Bridges is one of these contributions. "I was inspired by my 13-year old son Austin," she says. "He was only 7 years old when I was diagnosed. It was the sight of seeing the struggles and challenges that my own son was going through that brought to mind that we have no support forums or support networks for children that have parents with dementia."

Once the idea of a sleep-away camp for children of EOAD was formed, the real work began. "With the help of a friend whom I met through the early onset dementia circle" she says, "we applied for grants to help fund the camp. The foundation had two stipulations: 1) The camp had to take place in Oklahoma and 2) we had to initiate our own fundraising."

The first hurdle was finding a place. "Over a period of about two months," she told Alzheimer's Weekly, "I found a very reputable YMCA campground that understood that this was to be a respite camp for young teens that had a parent with dementia. They understood our needs and agreed to modify their program to include our one day of educational workshops."

Then only the fundraising requirement had to be met. "I am a very active member of the National Alzheimer's Website Message Board," explains Tracy, "so I posted a message there about raising funds for the camp. Pledges came in but it wasn't fast enough as the deadline rapidly approached. It was then that a friend of mine, actually a caregiver on the message board, stepped forward and suggested the "Spare a Dime" campaign. Basically it was just asking everyone to make pledges and save up their spare change and then only when and if the proposal was approved, would their donations be accepted. In about two and a half months I had over $2,600 in pledges. That is when I knew then that this camp was a "go". Then 32 long days passed from the time the application was submitted until I received a phone call informing me that the proposal was approved."  

The camp is unique in that it will, for six days, provide a respite for children of EOAD families. The program includes one day of workshops, led by JoAnn Webster, MS an Early Onset Coordinator for the Oklahoma/Arkansas Chapter and a session run by Judee Steward, BSN, that will provide the campers with the knowledge of available resources. The sessions will last from 9 a.m. – 4 p.m. (a total of 5 sessions in all with lunch and a break between each one). A typical day in camp will include time with horses as it has been proven that horse therapy is a great stress reliever. The campers will be taught by trained professionals how to take care of their horse, how to tack and groom it. At the end of the week they will have an overnight camp-out with their horse and when they return to the ranch, they will take part in a mini-rodeo. In the afternoons, they will get to pick and choose which activities they wish to participate in including swimming, fishing, canoeing, kayaking, archery, wall climbing, sling shot, mountain biking, skeet, ropes course, giant swing, 100 foot slide, arts and crafts, nutritional cooking and many more!

Camp Classe, the host, will provide the camp counselors and an infirmary nurse if needed.

There has been great interest in the camp. "People seem to think that this is an awesome opportunity for our kids," says Tracy, "one which is long overdue. I truly expect this project to offer help to EOAD families not only now but in the years to come."

The main obstacle to the camp's success seems to be its location-- southeastern Oklahoma. "I realize that parents are very leery of sending their teen several states away or even from coast to coast which is very understandable," says Tracy. "My hope is to be able to "bridge" Camp Building Bridges to another region next year to make it more accessible to other families."

"My dreams for this camp," says Tracy "is that it will provide the kids a week away from the home atmosphere to connect with others and just be kids. I hope that during this time it will give the parents some down time as well as to complete any legal issues at hand that need to be completed. I hope this time will give them strength and hope as families to continue their bond and love for each other."

Says one of Tracy's many admirers, Ruth Craig, "I continue to be inspired and awed by Tracy! So many things in life and in history began with a dream!”

Tracy Carlene Mobley has dared to continue dreaming and despite all the obstacles, has made that dream a reality.

Discussion Boards (Read comments or add your own) :

Camp Building Bridges Discussion

More Information:

Camp Building Bridges Website (Click here for program, registration and contact info)

Camp Classen (Where the camp takes place for the summer of 2008)

Byline:

By Roberta Bienenfeld, Special to Alzheimer's Weekly

Copyright:

Copyright © 2008, Alzheimer's Weekly LLC. All rights reserved.