My husband is dying slowly. We lose a little bit every day. Many of the posts I’ve written have focused on the heartache, anger, and struggles with my husband’s diagnosis of a terminal brain disease (Frontotemporal Dementia). There is no hope for a cure. It has changed the course of our family forever. It is easy to wallow in the negative emotions. There are many. It happens often. But, in peeling back the layers, there are many blessings as well. We’ve been on a journey of self-discovery. One that has reshaped our family’s priorities. One that has bonded us through grief. Finding and embracing the blessings have pulled us through the firestorm of the first two years post-diagnosis.
Blessing 1: Our family is still intact. In some ways, we are closer than ever. Honesty and constant communication has been key. The kids and I talk almost every day about some facet of our situation. When talking is hard, my kids text me.
Blessing 2: We are living. The diagnosis and disease have not slowed down our activities or travels. We continue to do as much as we can as a family and individually with friends. The kids play sports. My husband has lunch with friends. We host groups at the lake. (Full disclosure: it doesn’t always go spectacularly well – but we continue to try.)
Blessing 3: My husband is silly. He is happy most of the time. My husband’s left temporal lobe is primarily impacted (so far). This damage manifests itself in silly jokes and behaviors. Those that are impacted on the right side of the brain turn mean and angry. Luckily, we’ve only seen glimpses of the right.
Blessing 4: My husband has never had a particularly good memory. While memory is only part of this disease (and the easier part, honestly), we’ve worked over time to develop techniques for keeping him functioning. We text grocery lists or simple reminders. We share an online calendar. He knows how to use his phone GPS. His limited memory helps him forget minor blow ups and frustrations at the house.
Blessing 5: Emotional reactions are short-lived with this disease. Days are tough. Sometimes tempers are short. My husband struggles (feels) for only a minute or two and then the emotion is gone. It is a blessing that he cannot dwell on the inevitable. (This blessing is bit harder for the rest of us that grieve and hurt much longer.)
Blessing 6: The companies my husband and I work for have been amazing. There is a group ladies at my husband’s company that are patient and compassionate. The men struggle more but education and understanding about the disease has made a tremendous difference. My non-profit has given me complete flexibility to manage the affairs of our family and transport children during the day. They listen, hug, and cheer us on when needed.
Blessing 7: The kids and I have become stronger and more compassionate. There are four boys on my oldest’s soccer team that have tragically lost or are losing their fathers. It is a reminder that we are not unique. But, we have had to navigate our own path with the challenges of this disease. We’ve taken each hurdle and leapt with all our might. Sometimes we’ve face planted, but more often than not we’ve sailed right over the obstacle. Never did I believe that I could single parent my three boys. Yet, here I am. On the hard days, I teach my boys something like how to repair the dash bulbs on a car. They have to know that we are resilient, and we’ve got this even in the little ways.
Blessing 8: A typical symptom of FTD is the development of a new hobby. Hobbies vary from a new musical talent to things much more detrimental like gambling. My husband picked up entering sweepstakes. He has won multiple trips, shows (Globetrotters, concerts, pumpkin farms), cash, and merchandise. This week he won 3 nights in New York with airfare. His disease and its OCD tendencies are perfect for entering sweepstakes every day. (Careful monitoring has to occur that he is not subject to a scam. So far we’ve had no issues.)
Blessing 9: Although our road was long and stressful, the diagnosis came early in the disease. It gave our family extra time to prepare and make tough decisions to protect ourselves emotionally and financially. So many dealing with FTD end up bankrupt and destitute.
Blessing 10: Friends. We have lots of friends. We haven’t been abandoned. Thank God for friends.
And, so, as we enter the season of thanks, I am thankful that despite the difficulties this disease has cast upon our family, we are still blessed in so many ways. It’s these blessings that will get us through.