Donna's Story - Caregiving, FTD, & Memory Loss

My name is Donna and I am a caregiver.  Although I have no formal training, life has given me years of experience.  Each of my parents died in my arms.  I'm currently caregiving for the love of my life, John. Each caregiver's journey is different.

FTD was just a florist to me until 2011. That's when, holding hands in the neurologist's office, John and I waited for the results of his brain scans. When we heard “it’s not Alzheimer’s,” tears of relief rolled down my face and John visibly relaxed in his chair.

The doctor continued, “What you do have is Frontal Temporal Degeneration (FTD). Your executive skills and decision-making are controlled by this part of the brain.”  That meant nothing to us. After all, John was recently retired and we were happy. Reality set in after learning more about FTD. This relentless and cruel brain disease is typically diagnosed at age 57 - way too young. No known cause or cure is currently available.

My sweet, kind, intelligent man is fading away day by day. He looks the same and smiles the same. We do not have conversations. The words to match an object just will not come to John’s mind. So, we continue this journey together yet alone. Oddly, the one phrase he can still say to me is "I love you and will take care of you forever.”

As caregivers doing what is right, moral, or kind is not always easy, but we do it all with love - and for love.

My advice to caregivers is to be easy on yourself. When someone you love has a long-lasting illness, you suffer too. If you catch yourself thinking, “I cannot do this anymore," please do not feel guilty. You are human. You can do this. You are doing this. Breathe deeply. Do yoga. Take a break. Ask for help. These things work for me.

If you or someone you love is struggling with memory or cognitive symptoms, speak out. Millions of people suffer without understanding what is happening to them. Knowledge of a disease's symptoms and progression are crucial for us to best care for the ones we love - and ourselves. Once we know what we are dealing with, we can prepare for the future.

 

Donna Dean is the State President of AARP in Tennessee and resides in Nashville.  Want to hear more? Watch Donna on AARP LIVE! on RFDTV: Thursday, January 15 at 9 pm central/10 pm eastern.  To find your local channel for RFDTV, visit their site.