Life in our house has not returned to the pre-cancer rosy existence. Not that it was then either – when you have someone in the household who has developmental delays and autistic among other things, it can be very, very hard.
Over the years most of Mathew’s short term friends eventually left him because they grew up and he didn’t. Time and again I see someone getting along with him and them enjoying each other’s company but I already know that other person will grow up and away. Key Industries was a blessing for it is for intellectually disabled adults and it is here Mathew found some long term friends. Finally.
Cancer impacted his energy level and for the months leading up to diagnosis and the subsequent year of treatment, he wasn’t able to hang out with anyone other than immediate family. Once treatment finished he was too exhausted to do much for the first while.
After Labour Day weekend Mathew started back at Key Industries but only for 3 mornings a week. He just got too tired to carry on for a full day. Although we hoped he would soon be able to go for full days it hasn’t happened yet. So for three times a week, when he goes, I drive him to work when I go and at lunch or 1 pm, either John or I drive him home. If it is me I turn around and head right back to work. It is exhausting.
That means Mathew is home alone. A lot. When John and I return home after work we take turns spending time with Mathew. He gets lonely and he hates being alone. Sometimes Mathew plays his online games (PS4) and talks to his friends via the microphone from the comfort of his bedroom. He likes that because he can leave whenever he wants. We get some respite during those times he is chatting with his buddies.
This goes on through the evening. We rotate in and out of his room or Mathew will come out to watch a movie with me and sometimes John, in the main living room.
Extracurricular activities are rare right now because Mathew is experiencing bowel difficulties. It isn’t clear why this is happening but for someone with anxiety issues to begin with it has turned into a nightmare. He absolutely panics and wants to take Immodium all.the.time. He is convinced it is diarrhea when it isn’t. He panics when his guts start to act up and then again when he uses the washroom. He will scream and throw things if we don’t help him with the bathroom duties. He curses us and shouts out some nasty stuff. Sometimes we walk away and that’s when things start to fly in the bathroom.
The bathroom has taken over our lives. Since Mathew has to use it all hours of the day and night…well, sleep can be a rare thing. If you aren’t helping him then he is screaming and crying at you so rest is impossible. If you are out in the car or at the mall then you have to rush home.
He is afraid to go anywhere. We are trying to figure out what is going on and why. Did the cancer and treatment mess up his bowels? Is it more a problem of his body not being able to tolerate the food he used to eat? Did the radiation affect his bowels? Is this a permanent way of life now? How can we tackle the problem and figure out what is going on?
We already switched one of his medications but it doesn’t seem to have made much of a difference.
This on top of Mathew’s erratic schedule now too. He used to be by the clock for bedtime routine, etc. Now it is free and crazy. He roams the halls in the wee hours, wakes me/us up often when he is feeling lonely/depressed or whatever else.
The times he is home alone I sometimes get 4 phone calls a day from him. Sometimes they are happy calls and other times not so much.
It is exhausting. None of his friends live within walking distance and when we make visiting arrangements either John or I have to pick up his guests and drive them home, plus schedule and accompany activities.
It truly is having a young child for 22 years. Behind our walls days blur into nights into weeks. It is hell for him because bathroom problems are one of his worst fears. It took us 16 years to get him to take care of himself in the bathroom and that was no picnic. It was 16 years of hell trying to force him to do it (against his will). That lasted 4 years.
When it became clear the spinal tumour impaired his ability to move, bend or walk, etc, the bathroom duties started up again. During his treatment and frequent bouts of C-Difficule there was plenty of hours spent keeping him clean and dry.
In the fall but starting before that, my Pug started doing his business in the house nonstop. In an effort to head off accidents I grew accustomed to taking him out once or twice a night. That didn’t work and unfortunately partially led to the decision to euthanize him at the age of 11. Now our other dog, Jasmine, is 11 and she often needs to go out in the wee hours. It is not something John ever does unless she claws at our door ~ and then you know it is an emergency. So here I am…letting her out first thing in the morning plus through the night. Plus Mathew 24 hours a day…
I am tired. This winter of unrelenting cold and record-breaking snowfalls is starting to feel like a vicious and never-ending cycle. Even sitting on my back deck and inhaling spring and a bit of warm sun would do some wonders any time now.
My life and will always be tied to Mathew. He likes to hang out with me most of all; watch movies or his iPad, listen to music, or go out with me. He just feels most comfortable with me and feels like he can handle things better with me.
I hope we figure out this bathroom nightmare out soon because there doesn’t seem to be an end in sight either to it or this endless winter.
The cancer story doesn’t end just because treatment finishes.