It has been 2 years and 4 months since the diagnosis and he is currently out mowing the lawn. It continues to be his favorite thing to do. Although he gets tired and needs breaks, I am thrilled that he is still able to do what he loves.
This week he had a “hiccup” and it could have been a very scary one. He was driving home from visiting a friend the next town over, and at the end of the driveway he confused the brake and gas pedal. He said that he tried over and over and could not figure out what he was doing wrong. So, he put one foot on each. The result is that the truck wheels spun. Again, he said he was confused. When I asked what he did next, he said that he put the truck in park, and walked to the mailbox. When he returned to the truck, he remembered what to do. I asked if he was frightened. He said that he was mostly just confused. As a result, he is no longer able to drive alone and to be sure that he doesn’t forget, I take the keys with me to school.
We have not transitioned well this week. I went back to school Tuesday in a foul mood. I didn’t want to leave him any more than he wanted me to leave. It broke my heart to see him standing on the porch as I left, and I will admit that there were tears. From both of us. We have held on a little harder as we sleep, I’ve called every time I have had a break, but it isn’t enough for either one of us.
Over the past couple weeks, he has been helping me in my classroom and it has been so much fun. One thing that we are going to try, is having him volunteer in my Second Grade classroom. It may be too much stimulation and too long of a day, but we are going to give it a try.
If someone way smarter than I could come up with a way for caregivers to stay home with their loved ones and get a stipend that would cover a salary and insurance, I would take advantage of it in a heartbeat. It has to be cheaper than Home Health or a Memory Care Facility at this point in the game. I do realize that it is important that we have respite and time away, but I would love to be with him, especially now when it is early.
He has had a great summer. It started out with me taking a trip with my oldest daughter to NYC for almost a week. We hired a family friend to stay with him nights and to make sure that he took his meds. Although the young man didn’t follow through completely with our agreement, he did keep checking in, and my husband was alright. Thank God. This was the first lesson in: Pay the person hired AFTER the service rendered, based on how well he followed through. Luckily, my husband was fine, but very glad to have me home. Once home, we enjoyed a couple of weeks on the homestead before I returned to teach Summer School. Again, he did well while I was gone since it was only a half day. We worked at the farm together in the afternoons, or worked on projects at home. August was filled with lots of family! He and his cousin invited every family member they could find and we hosted the first annual family reunion. Family that had never met or hadn’t seen one another for years joined us for a Chicken BBQ. The following day, our son flew in from Florida with his family, and we spent 8 days with our immediate family. Amazingly he did really well. He rose to the occasion and had just a couple of small glitches, but overall, everyone saw him at his best. This was important to him.
He did so well, that it was hard not to hope that the diagnosis was wrong. I have worked hard to take away any and all medications and supplements that are not absolutely necessary and continue to make it my priority. He hates taking so many, so the doctors and I are working to reduce and eliminate. His blood pressure is finally stable, he is clearer than he has been in a long time, and he is pretty content. He has enjoyed the gardens, trips to the ocean with the dog, ice cream cones, naps, watching episodes of Alaskan State Troopers, and the dog. He has had a happy and fulfilling summer. We have not done everything from my 50 things list, but we made many memories for the kids and I to hold on to for years to come.
Then I went back to school and we had the truck “hiccup”. This is day 2 of my 3 day weekend. Thursday night we FaceTimed with the kids from Florida, Friday we took a road trip and surprised Kid #2 at her school, and tomorrow we will take the Ferry to see Kid #3. He just wants to be with us so I am trying to do that for him just as much as humanly possible.
It’s hard not to think about the future and to worry about his care as things get worse. I worry about how we will afford help and how I will be able to hold down my full-time teaching position when all I want to do is be with him until his final breath. We have no Crystal Ball. We have no idea how, or how fast this thing is going to move. I am sorting out what I do and don’t want my next chapters to look like, and we have been proactive by doing all the necessary planning. This month our stone will be set on our family lot across from the church that we attend and the home we raised our children. Surprisingly, this doesn’t make either one of us sad because we know that we will meet again in Glory. We look to the heavens and we thank God for our home, the lives we have had together, the children that we raised, and our cups overflow.
So how are we doing after 2 years and 4 months? Not too shabby. But there is next week, and with it will bring more “recalculating”. I have accepted that this thing will get worse before it gets worse, but we will be okay. We have good friends, family, co-workers, and a Heavenly Father that will help us get through the tough days. For that, we are deeply grateful and we ask that you continue to uphold us in your thoughts and prayers. It truly helps.