This year marks the 26th year of getting my room ready for the next crop of kiddos and the first year that I have been apprehensive about leaving my husband. Although he is doing quite well, I find myself wanting to stay home with him. To be honest, I think that I just don’t want to waste one minute of our precious time together.
The more that I learn about Frontotemperal Dementia (FTD), the more I become frightened. I wish I knew how fast it was going to move so that I could plan better. Yet, I don’t want to know. I don’t want to live each day in fear and dread.
One of our biggest goals this summer has been to eliminate all medications that don’t absolutely have to be taken. I will say that his doctors have been on board with this and amazingly, I think he is doing better. He seems clearer with less brain fog. He isn’t stuttering as much as he was, and he isn’t twitching and staring like he was even 6 months ago. He is doing so well, that sometimes I pretend that everything is alright and that this has been a big misunderstanding…
Why is he doing so well? He loves the summer. He mows, weeds, plants, harvests, and spends nearly every waking moment outside. He has also had time with family. I worried when he and he cousin dreamed up a Family Reunion at our place back in March. I didn’t want him to overdo and regress. He did need some help with the planning, but he really rose to the occasion and pushed hard to make all the necessary plans.
On August 8th, we successfully entertained 51 Higgins Family members at our home, where Rusty was able to see 3 uncles, 2 aunts, many cousins, nieces & nephews, and all but one sibling. The homestead looked it’s best and we were proud to show people where we feel so blessed to live.
The next day, our son, daughter-in-law, and our 2 precious grandchildren joined us, along with our oldest daughter. Our youngest was able to join us for 3 days. We celebrated 3 birthdays with family, played a huge amount of ladder ball, enjoyed nearly nightly campfires, with lots of marshmallows, went to the fair, picked vegetables and fruit from the garden, played on a homemade slip and slide, made a gingerbread camp site, enjoyed a breakfast at Governor’s, played mini golf at Blackbeard’s, had a Girl’s Day in Freeport, looked through lots of photo albums, gave the cat and dog more attention than they have received EVER, watched our lawnmower zoom past the horseshoe pit at record speed with a number of different passengers on the back, and danced by the fire with people that have my whole heart.
So, what do I notice for changes right now? I notice slight glitches. Mostly, things that were already a weakness are more so now. His reasoning skills aren’t as strong as they once were. He isn’t as patient, especially with the the dog and I. I suspect it is because we are always around. He is tired all the time and it is hard to determine whether it is because he has been pushing too hard physically, or if it is just because his brain needs to work so much harder to keep up. He still drives in town, and he mostly does alright. I do notice that his reaction time isn’t what it once was. Dressing his feet seems to be more of a challenge. Lock laces help with the tying issues, and he sits to put on his socks. His balance is sometimes off.
One thing that I have learned is that people with FTD can move in and out of stages. He moved from mild to moderate this spring, and back to what I would consider to be mild over the summer months. FTD doesn’t seem to necessarily take a linear path. In fact, he seems to have gotten better. It is hard not to get your hopes up…
Anyway, it makes it hard to get excited about going back to school. As much as I love to teach, I wish I could stay home with him. I want to savor every single minute and celebrate how well he is doing.
I am still afraid of the future and I don’t know how we are going to handle his eventual regression. When I start to think about how I will work while ensuring his safety, I feel overwhelmed. I also worry about how long he can safely drive. I worry about my children and grandchildren’s emotional wellbeing and I wish so badly that I could protect them all from the pain of losing the man that they think walks on water.
Sometimes I feel like the Kingpin. What happens if I’m not strong enough?