For many years I was a wife and a caregiver for my late husband. He had Fronto-Temporal Degeneration or "Dementia". Many of those days are chronicled here on the blog that was first called "Go to Your Corners and Come Out Fighting." A couple of years into the battle, I changed the title to "Go To Your Corners and Come out Loving." At that point, I realized that one can not fight the disease. You can only learn to cope. So I used this blog as my therapy group, my friend, my replacement for him and spent many hours hoping I could help other families in the same situation.
A little over three years ago, my husband at that time Gary ceased to know me. His body began curling up and experiencing atrophy. It was hell for him physically and my emotional state went through the same hell. I wish the disease on no family.
When I think back on that time, I was experiencing grief. It is hard to love someone whose brain doesn't know you. The person you love is no longer there. I was grieving as if he was dead. But, I still had to go to the memory unit and look at him. The healthy mind experiences a special kind of confusion that cannot be explained. I was losing the only man I had ever truly loved and I was being devastated financially.
I remember praying for God to take him and make him whole. Eventually, Gary died and had a peaceful departure to Heaven. My work was done. All I had to do was heal. It was not that difficult for me as I had lost him long before the actual death.
Many people thought I should wait a year before I made any big decisions. No one can tell you how to live your life...no matter how well-meaning they are.
Fast forward to my life now. I had a beautiful wedding two weeks ago and married a man that I would only have dreamed of a few years ago. He is kind, healthy and I am very much in love.
He understands times when I still get teary over old pictures or am reminded of good times. He is precious to me.
A friend called me last weekend and asked if I could consult with her neighbor who had just put her husband in memory care. She was experiencing the range of emotions affiliated with that hell-time. I got a lump in my throat and knew that I had to say "yes" to the request. There is a reason I lived through that time....I have to help others. My prayer is that I can be of some comfort to her.
Today, at lunch, somehow the conversation turned to our life stories. I was meeting with a colleague whom I had never met. I was able to quickly tell the whole "I was a caregiver story." I did so with little emotion and was able to articulate some of the events. I realized that my life as a caregiver will never be over....it merely changed from being a full-time caregiver with sleepless nights to the role of being called upon to help families cope. I am okay with that role.
Meanwhile, I am loving life. Part of the comfort I can give people in the same situation is to tell families that God is always there and taking care of those who cannot do so themselves. There is hope for a new life. I am living proof. Thank you, Lord for the miraculous life.
I have been having very intense dreams lately....mostly involving my late husband Gary. He was diagnosed with Frontotemporal Degeneration in 2014 and I suffered with him until his death in January 2018. I loved him dearly for 32 years and we had many great adventures together....many of which are chronicled in this blog.
The last few years of his life were mixtures of laughter, misadventures, caregiving and at the end, a near rendition of what I imagine hell to be like. I was always concerned that once I switched from loving wife to the status of "caregiver" that I would never be able to separate the realness of the disease and its horrific effects from the beautiful memories. There are times when I sit and try to recall special moments, vacations, etc and I always seem to super-impose the memory by inserting the "dementia Gary" into the memory. It ruins everything.
But I have hope that someday the memories will be sorted into accurate timeframes with accurate faces, wellness and memories. There is hope and I know the accurate memories are still there due to the dreams that have perplexed me these past few nights.
For example: last night I dreamed that Gary and I were riding in our Toyota Prius but we were sitting in the back seat and attempting to drive it from the back seat. We were in a neighborhood somewhere that we have driven before and we were laughing at how silly the situation was. He was normal again. Our Beagle dog Diva Gerl (now deceased) was running next to the car and sniffing the flowered trail that I saw outside the window. We would have never let her run free, so in my mind this was odd. Gary was going on and on and talking about the houses that we were passing...much like he used to when discovering a new place or sharing one of his entrepreneurial ideas. I found myself listening to him like I never had before. He was intelligent again. It made my happy.
Then, the dreamed continued and we pulled up to our old house in Elk Grove, California. We hopped out and the scene turned dark. Everything was pitch black as we opened the front door. When I walked in the house I found it odd that the night light by the front door was not working. Gary turned on the flashlight to his phone and headed for the breaker box. Again, he was normal with no signs of the dementia stare that plagued him in the end.
In the dream, the lights came on but he did not re-enter the house. I looked for him and found him outside the house at the breaker box. It was open and he had flipped the breaker to bring on the lights. I looked at his face and he was again the "dementia Gary" with no response. Somehow, it was symbolic of him trading his intelligence for the light.
Ironically, when I awoke this morning and entered by bathroom, the night light was dark and the electrical plugs did not work. Switching the breaker did no good and now I await an electrician.
I don't really know what any of this meant and I can only assume it is a coincidence.
If you have a loved one with FTD....take videos, make recordings and take lots of photos.....I would hate for you not to have the good memories for times when things are not going well. It is important to preserve the healthy memories.
