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Surviving the changes

Bob Bamford, who suffers from Alzheimer’s disease, sits with his wife, Elaine, in July 2013, sorting coins on the couple’s patio. Bob Bamford passed away from Alzheimer’s disease, a progressive, degenerative disease that kills brain cells, causing loss of memory.

Elaine Bamford – Special to the Chronicle

I am welcomed with a smile and a clip board at my doctor’s office. I smile back and accept the papers attached to the clip board with a thank you. The receptionist is new. She says, “Please look over the paperwork and make changes if necessary.” It is early in the morning and I am ready for my checkup, but that last sentence throws me for a loop.

Carefully, I review the first page. I scroll down past name and address and realize I must cross out “married” and circle “widow.” Widow; I wasn’t prepared for that. It has only been two months since
Bob has passed. I touched my wedding band, but just for a second so as not to start tearing up in the waiting room. I sighed and thought about all the changes that have taken place since the neurologist confirmed my suspicion, that Bob had Alzheimer’s. That was over five years ago. There I sat waiting to be called to an examining room, thinking how dramatically my life has changed.

Bob and I were so happy before our world started slipping away. We both looked forward to our weekends together. He was the best shopping buddy. Ladies would stop us in the aisles to tell us how wonderful it was to see a husband right by his wife’s side, helping her find a blouse, shoes, or jewelry. Yes, it was true. He was always up for the challenge: finding, the right size, color or special sparkle, he would smile with satisfaction when he was able to complete the task by holding up the correct item in his hand.

Alzheimer’s changed all that. Bob began to get confused in the stores; he would tire easily and would lose his patience. Our weekend excursions stopped.

There was a year or so when I could leave Bob at home, rushing out to get groceries and quickly returning to check on him. Eventually, I couldn’t manage the day-to-day care of my husband and had to face the enormous guilt of choosing a skilled nursing home that could meet his needs. This change was the most difficult. After visiting Bob each day, I would return to an empty house.

For the last three years I have gone solo to all events. Whether it was an invitation for dinner, a birthday party, or shopping, it was alone. I even attempted to go out to eat by myself several times, thinking that being part of a couple did not define me. I fooled myself into thinking I would look busy by using my smartphone as my companion. However, I always left the restaurant feeling empty. Besides, seeing older couples holding hands or laughing during their lunch was too painful. I wanted to go up to each of them and tell them how lucky they were to still have each other and to never take it for granted.

Yes, there were many painful changes. Watching Bob slip away, unable to communicate with me, was more than I could bear sometimes. The most difficult moments were the calls from the nursing facility. They became all too frequent. Bob had pneumonia again and was being sent to the hospital. I would sit by his bed, wondering if this would be the last time.

My saving grace was the support I received from the members of the caregiver groups I attended.
They gave me the strength to face each day with determined energy. If they could do this, I could too.
We supported each other and survived together. We lifted each other with a hug and a compassionate ear. We learned to cry and laugh together. We shared our true feelings with no judgment.

When I was asked if I would be interested in training to become a facilitator, I didn’t hesitate. I knew how helpful these group meetings had been for me and I realized it was time to help others. I wasn’t sure if I could fill the shoes of our previous facilitator but knew that we all had so much in common and hopefully that would get me through my feelings of inadequacy.

Little did I realize what a gift I would receive during this journey. I currently facilitate three groups. The members have made me stronger. They have made me want to be a better person and a better listener. I wanted to be there for all those who had the courage to attend their first meeting and share their story with us. I am so blessed to know each and every one of them.

Through my online research to help members of my support groups, I found Dementia Friendly America. I was intrigued to think that there was a nationwide initiative. Upon additional inquiry, I realized that this just might be what Citrus County needed. After all, 35 percent of our county is 65 years of age or older. The statistics confirm that one in eight people over the age of 65 have been diagnosed with some form of dementia; Alzheimer’s being the most common.

I knew that if this was going to happen, this initiative would need to be a community commitment. I reached out to Galen Spinka, president of Continuity of Care of Citrus County. The group is made up of caring members of the community with a focus on all things related to health care. I am so grateful to Galen, the board, and all of the members for their support and commitment to make this a better community for the caregivers and the loved ones who need and deserve our support and understanding.

We have formed an action team and have met the requirements to be recognized by the Dementia Friendly America as the first county in Florida to be part of this nationwide effort. Through questionnaires, we have identified and targeted the needs of our community and will work toward meeting those needs. Although this initiative was launched only six months ago, we on the team are committed to working together to make a difference in the lives of others.

Alzheimer’s as provided me the opportunity to go through many changes in these last five years. I not only survived, but my caregiver friends have helped me to become stronger. I pray that someday soon there will be a cure. Until then, we need to work toward educating our community members about the disease, providing resources, and encouraging everyone to stay active in the community for as long as possible. Together, we will help others survive the changes that Alzheimer’s and dementia will bring to their lives.

Elaine Bamford is a support group facilitator with the National Alzheimer’s Association.
Posted on 17 Mar 2017

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