I have just begun my 26th year of teaching. That means that I have now completed the FERPA training, heard how to apply an EpiPen and how to properly clean up blood, signed my MEA yearly paperwork, listened to how data is to drive my instruction and how my evaluation is going to represent how successful I am, 26 times. Twenty-six times. We have played cute games to tackle the rules and procedures, met the families, and our rooms are ready. How do I feel?
I’m not going to lie. I wish I didn’t have to leave him. I felt the same way when the children were little and I had to drop them off at Daycare. I remember one really good cryfest that sounded something like: “How can I leave my babies to go teach other people’s babies? I feel like a crappy mother.” I would have given anything to homeschool my children. I love to teach and I love my children. But, I couldn’t afford to stay home.
He is mostly independent and safe to be left alone during the day. He has been making steady improvements since the stroke, which was 5 months ago on September 1st. He is complicated and never has been a “text-book” patient. Mix Frontotemporal Dementia: Semantic Type, with Traumatic Brain Injury, and a Stroke. Then add: clumsy, stubborn, hard-headed, opinionated, driven, intelligent, compassionate, and sensitive. It is a delicate dance, because we also need to remember that he is also a Dad, Papa, and a husband who has just turned 50.
He is still in the chair and he hates it, but he tries to be a good sport. He can no longer drive. He really misses being able to jump in the truck and head to the store for a soda, or to throw his pole in the back, and head for the pond. But three trips to the eye doctor this summer determined that his eyesight is terrible and he has lost his peripheral vision. This is not a result of his eyes, but a result of the damage to his brain. He sees spots and lines. Sometimes when he is driving the lawnmower, he will stop because it looks like he is going to run into the top of a fence. As a result, dementia patients often have a hard time with rug patterns. Some of the patterns look like holes and it is terrifying to walk over them.
The good news is that my favorite man is now standing. The brace on his leg supports him while he stands at the sink, or to pick raspberries! Although he cannot walk without the use of a walker, he can slide. He can take a step with his good leg and slide his bad lag, and walk down the berry patch. Together we picked 67 quarts of raspberries that we transplanted from the farm. He can also walk up and down the stairs sideways. So, with one wheelchair upstairs and one downstairs, he is able to do the laundry and move around the basement while I am away at school.
My husband wheels himself to the garage and uses the lawnmower as a “golf cart”. He sits side-saddle and mows the lawn. He takes the lawnmower to the gardens, slides off and crawls through each and every garden. He sweeps and vacuums while sitting in the wheelchair, and is able to stand to do the dishes. His right arm has nearly completely awakened, and he is so happy to be able to use it. The next step will be to begin writing with his right hand again.
He has only taken a couple falls since the stroke. One, was down the stairs. His bad leg got caught underneath him when he was trying to scoot down the stairs on his bottom. The other was a significant fall in the garage at the beginning of July. He was trying to organize his tools, stepped on a 2-step step stool, lost his balance and slammed down between the lawnmower and table saw on his good shoulder/elbow. He was wedged in and unable to pull himself up with his right arm. He continued to pull and fall until he got himself out. Both falls were while I was away and I still fight the guilt of not being there to help him.
We have been very blessed to have Home Health Care that comes in 4 days a week for an hour at a time. The physical and occupational therapists have become much more than trainers, they have become friends. It is interesting to seeing the different personalities and techniques. While one is motherly and constantly reminding my husband to “protect his baby birds”(weak limbs), another is aggressively urging him to do “just one more rep” and to “push through the burn.” Not only are they helping him to make gains, but they are “eyes on” while I am away, and that brings me peace of mind. In fact, right after the garage fall, PT was there to evaluate him, and encouraged us to get his left arm, elbow, wrist, and nerve looked at throughout the summer. As a result, we now have an appointment with a specialist to decide what to do with his partial tears in the muscles of his shoulder and elbow of his “good arm”.
There has been some dementia related decline, but it is slight. Change doesn’t happen quickly or in huge increments. It is subtle, and I have to stop and think when doctors ask if there has been any change. Part of it is that we modify and make changes without thinking much about it. Part of it, is that I am a second grade teacher who shifts and changes all the time. It is what I do. Part of it is that I am a natural caregiver and I just don’t think a lot about it. The biggest part, is that I choose to live in the Land Of Denial. It is a great place to hang out, and anyone is welcome to join me at any time.
We both try not to think about it all the time, but it sneaks in a little every day. He is still highly verbal and understands what is happening to him. We understand that his diagnosis is incurable. There are no survivors and he has just a few more years to live. We get that, but we are determined to push through and find JOY.
This week, my devotions were about purity. Honestly, my first thought was, “Well, that ship has sailed.” But, the more I read, the more I realized that purity is about making sure that what I think and say is pleasing, helpful, and encouraging. I was reminded that I need to be a role model and to represent myself with a pure heart. Surprisingly, our Keynote speaker (Charity Bell) also spoke about being relentlessly happy. She reminded us to forgive ourselves and to ignore the unkind remarks from our inner voice. We need to choose to be happy both personally and professionally. Her plea was to:
BE POSITIVE. BE CONSISTENT. BE RELENTLESS.
So, as I begin school year number 26, my prayer is to be relentless happy. I want to be a JOY seeker. I want to remember that everyone has “stuff” and that life is hard. I want to be an encourager, and I want to see the best in every situation and in every person. I don’t want to live my life in dread, and I don’t want to waste my time with worry. I want to feel content. I want to enjoy God’s beautiful gifts and live in the moment because I have so much to be thankful for.
Here’s to a new year.