Jan Ford – Frontotemporal Lobe Dementia is Only the Beginning
Jan Ford is proof that a diagnosis of frontotemporal lobe dementia (FTD) is not the end of the world. After 22 years in a relationship, she finally got married!
Like most people who are diagnosed with dementia, Jan’s life was full. During the three years leading up to her diagnosis, she served as the Program Administrator for the Oklahoma Department of Human Services Office of Client Advocacy for the Advocate General. Her department was responsible for determining if a person with developmental disabilities or a juvenile in foster care was being abused. She was able to juggle multiple responsibilities, including coordinating activities of advocates, investigators, the intake unit, and program supervisors.
The FTD Diagnosis
In 2003, finding it impossible to multi-task let alone make decisions, she went on leave to resolve what she thought was work-related stress combined with PTSD. (She still suffers from the sexual and physical abuse and neglect she experienced starting at age 2 until she was 12.) Two months later, she returned to work. On the morning of the fourth day, she realized she couldn’t function at the high level required. “Decisions and actions that were spontaneous, were no longer,” she said.
Jan went on short-term and then long-term disability. “Never did I think my inability to work had to do with anything else besides my mental health issues [PTSD]. I was sent to a neurologist who happened to be familiar with FTD. Even before the PET scan confirmed it, he knew and told me, right away. He said there was no treatment and I could expect to live for 1-2 years.”
“For the first nine years, I stayed at home. I had always been in charge of the finances and meticulous about planning for our future. Everything was in order. I wrote out my end-of-life plan. Given my history of sexual abuse, the thought of someone physically taking care of me is hard to bear. I’ve detailed how I want my life to end and where. Only I know the details, although my family is aware that such a plan exists and supports me.”
Jan credits Laura Bowley of Mindset Centre for Living with Dementia and Maureen Matthews of To Whom I May Concern for helping her emerge into the world again. “Maureen and Laura’s understanding of the dementia diagnosis and their faith in me to accomplish what I wanted to helped me. In 2014, I even went to Geneva to speak about living with dementia before the World Health Organization at their annual meeting.”
Newlyweds After 22 Years
At 6-foot 3 inches, Jan turns into a giddy little girl as she relates how she and her partner met when she was 25 and then reconnected eight years later. As soul mates, they struggled with years of uncertainty with issues most of us take for granted. What if something happened to my loved one and I don’t have the right to be by her side? After the Supreme Court ruled in favor of marriage rights for same-sex partners, Jan and Rose tied the knot.
Although, her FTD symptoms prevent her from recalling that special day, she watches the video repeatedly in order to remember. Jan adds, “Rose and I each wear a necklace that has the date of our first date, moving in together, and wedding date so that I never forget the most important dates of my life and so that she won’t should she ever have dementia. [Let’s hope not!]
Today, Jan and Rose, have the same rights as other married couples. GREAT odds for a person given a life expectancy of two years, who marries a dozen years later!
How Jan Lives Each Day
While Rose is away working as a courier for Fed Ex, Jan enjoys the companionship of Willow, their newly adopted Cocker Spaniel. Four days a week, she spends online trying to keep up with what’s new in the world of dementia. “It takes lots of concentration,” she says. She also does video chats.
These days, the 57-year old co-founder of Dementia Alliance International leads a more domestic life with her wife, Rose, having fun, laughing, cooking together, and enjoying Willow on their beautiful home on the lake.
Jan’s Advice for People with Dementia (PWDs)
Take out of each day what you can get out of it. Never leave a day empty. If the best you can do for a day is wash your face and brush your teeth and that’s a challenge for you, you have not left the day empty.
Jan’s Question for People Without Dementia (PWoDs)
At any given moment would you choose to change places with the person with dementia?
For more information –
- Click to read PWODs or People without Dementia.
- For a very important tip on caregiving for people with dementia, read Avadian’s Diamond Tip for Caregivers.