Caregiving for my husband with Frontotemporal Dementia

I have started this post at least 10 times and the words seem to get stuck inside me. They are stuck because my true feelings are just emerging after 2 ½ years of officially knowing my husband, Dave, has Frontotemporal dementia.

Life has been a blur since our initial visit to the neurologist. At first, I didn’t believe the doctor. It doesn’t matter that I have been seeing the signs—daily headaches, changing personality, not recognizing friends etc.— for at least 5 years, or that the CT scan shows large blackened areas in his temporal lobes, and his cognitive test scores are well below average. I thought the specialist made a mistake. Surely, science could reverse whatever was going on in Dave’s brain, or at least have drugs to slow it down. Better yet, cure it.

In the meantime I buried myself in work, or any activity which would make me so exhausted, I didn’t have to feel the pain and grief inside of me. It took 2 years for the reality of my life to finally hit me in the face. I will never forget the moment when I cried until I didn’t think I would stop. It was after a phone call from a woman whose husband had passed away from FTD eleven years ago. Our conversation was long, and for some reason, I asked her details of their journey and how she managed. Listening to her felt like someone was punching me in the solar plexus—I couldn’t get a breath. I felt like I was barely hanging on at this stage, so how was I going to survive the rest of the trip?

I knew I needed help—more than just going for my walks in the woods or bike ride along our country road.  As I reaching out for help (not easy for me to do), I met a wonderful life coach, Sue Ann, who works with energy. It may sound odd, but everything in our world, including our thoughts, is energy vibrating at different frequencies. Sue Ann taught me various energy releasing techniques (will describe them in future writings), which allows me to release feelings of grief and sadness, replacing them with happier one.

My life is rich and I wouldn’t trade it for the one before Dave’s diagnosis. There are still moments when I look at a couple in their 50’s holding hands, wondering if they are having intelligent conversations. But who knows what their stories are? I only know I have many blessings. A wonderful husband, who is not angry or ashamed about his dementia; who thanks me daily for accepting him the way he is, and for staying with him. I have beautiful adult children, who are personally growing every day through this challenge–shining their light, like their gentle father, for the world to see.  

I know our journey has a ways to go, but I feel calm and more peaceful inside, believing I will be able to handle what comes along. I have my running, cycling, hiking, my family and friends to thank. Friends at www.ftdsupportforum.com; www.facebook.com –’FTD-Walking the Path’ group; http://www.irenetdjftd.blogspot.com; www.boostershotcaregiver.wordpress.com …..are opening up my world.  I am realizing there are thousands of families travelling the same road as ours.

We are handed these challenges for very good reasons. It usually takes some time, often years, to realize what they are. In my case, Dave is meant to be my teacher of  ‘surrendering’ to life–accepting it for what it is, but still doing your best to enjoy every moment. He is teaching me about ‘patience’ when he asks 450 questions a day; ‘flexibility’ because I don’t know what today will bring—is this the day he has another seizure or when his driver’s license will be taken away?  He is teaching me to ‘live in the moment’–that is all we are guaranteed.  Dave doesn’t beat himself up for his mistakes of yesterday, and he is too busy focusing on today, to worry about tomorrow. He knows he will die, but so will the rest of us. I am gaining far more than I am losing. But I had to work through the process of feeling the darkness and the pain, and I am finally giving myself permission to feel it, instead of stuffing it down and pretending it doesn’t exist. Even now as I am writing this, my eyes are filling, but it is okay. This is part of being human and I am more accepting of it.

Fortunately for me, I have Dave who wakes up every morning with a child-like smile, ready to live another day–accepting whatever it brings. Our relationship is changing; it is going far deeper than I ever imagined 31 years ago…when I said ‘I do’.  

I will continue growing along this journey with dementia and be grateful for it–reminding myself that you need ‘darkness to see the stars’.