What It’s Like To Have Frontotemporal Dementia (FTD)

Hello, my name is David Fleming.

David Flemming FTD Dementia
The Flemming Family

Recently, I was diagnosed with Frontotemporal dementia (FTD). I had my twenty -four hour pity party and then it finally hit me. I am a retired firefighter and Emergency Technician. I have seen so many victims of accidents and there are so many people with health, financial and relationship problem who had far worse problems than me in life. I finally realized, why did I think I should not be immune to the problems of this world? What made me so special, that I should be exempt from these problems of life? I have the greatest family in the world. Four sisters, a brother, two sons, a granddaughter, in-laws, cousins, aunts and uncles, friends and a church family who love and support me always with unconditional love. I know I am the richest and luckiest man alive. I sat down and wrote to all my family and friends and thanked them for standing up with me and all their support and love.

I decided that day, that I was going to use all my God given talents to help others less fortunate than myself. I would strive to become a better man, brother, father, grandfather and friend. I would give my love to all these people, better than I have ever done before. I have always loved them, but I now love with more compassion and in a more passionate way.

I have always been a person with a positive attitude, but now I am more determined than ever to be more positive and a good example to everyone I meet. I am doing several things to keep myself as alert and useful as I possibly can be. I help my sisters, my church family and friends with construction, electrical, plumbing, and even helped one sister devise a filing system to aid her with her finances. I do some cooking, laundry, and keep a clean and neat home. I work crossword puzzles, read books and play games that exercise my mind. I walk a lot and work at doing things that keep me in good mental and physical shape. I love to dance and sing karaoke. I make my bed every day and make certain that my medicines are in my daily planner. I try to pay attention to my physical appearance. I dress and clean up pretty well. I brush my teeth, shower and shave every day. A positive attitude and prayers will keep us sharp and looking and acting young. Our hearts will take care of the rest.

For those who are taking care of us, please don’t forget to tell us what we are doing different. We may not know that we are digressing, but we need to know what aspects of our lives that we need to work on to keep us on top of our deficiencies. Also, if you are taking care of our mail and our bills, please remember that we still need to feel important and loved. So go ahead and send that junk mail to us! You have the checkbook and credit cards, so we won’t be buying all that junk that they ask us to buy. Another thing you can do is to give us cash when we go out to dine or to the movies. Just enough cash to pay for what we doing gives us pride to still be able to pay our own way, at least in our own minds.
I am still looking forward to a bright and exciting future. I will never give up on myself and what I can do to help others. I want to travel and see the world before I have to say I cannot do this anymore. We are all trying to get through this disease with as few problems as possible.

Sincerely, David

National Caregivers Month: Betsy is a Younger Onset Caregiver

John and Betsy
John and Betsy attending the Alzheimer’s Public Policy Summit 2011
We were devastated when my loved one (John McClelland) was diagnosed at 55, everything changed. After a couple of years and my position ended, I decided to stay home rather than take another position that required heavy travel. I don’t see myself as a “caregiver” at this time, but I do try to help where I can. It has been an adjustment for me to not work and to deal with the loss of income, but it has been a gift to have time together before the full impact of the disease takes over.

We have traveled the country, visited friends and built new memories. I don’t know how long we will continue to do this, but it has been a special time for us.

I take a lead role in managing our finances; making more of the routine decisions; try to keep projects and plans on track; ensure John has a quiet environment to rest; and has healthy meals. It is hard to watch the days when John is caught in a fog trying to sort out the days activities, it exhausts him. Fortunately we have more good days than bad.

We jointly attend a support group for those in early stage. We have already lost one member and all share in seeing the slow transition of the disease together. The friendships and support we have is very important to us. I also attend a support group for caregivers; our leader is excellent; bringing in support for us on the ongoing grief process, as well as time for us to support one another. In that group, are my heroes who support their loved ones in the later stages of the disease. They are role models of strength, love and commitment. I only hope to be that capable when those demands are called upon to me.

-Betsy Anderson