ALS sucks

It’s ALS Awareness Month.

So here is some awareness.

Ben is 40 years old and he cannot walk, bathe, or dress himself. More often than not one of us has to feed him at night. He is losing his voice and one day it will be replaced with an electronic version of himself. Just in the past week, the doctors have ordered a voice computer for when he can’t talk, a lift for when he can’t stand, and a feeding tube for when he can’t eat. He’s fallen twice in the past week and had to get 12 stitches in his forehead thanks to his weakened muscles. 

I have had more conversations start with Bub saying “I remember Dad before” because, of the two of them, he has the harder time reconciling this version of his dad with the one from when he was little. And still LG will occasionally make a drawing or tell me a story of what it would be like if her dad wasn’t sick anymore. 

It’s hard 90% of the time, so much so that the 10% that seems okay feels like a lie. And it will continue to get worse until one day the worst thing will happen.

That is ALS. And ALS sucks.

In case of an emergency

Wednesday we went to ALS Clinic where we see all the medical professionals who manage BT's symptoms and get him all the stuff he needs. It's a long morning, not to mention that we have to now travel out of town which necessitates an overnight stay. It's a bit to manage but, once again, my parents are invaluable for caring for the kids. We usually come back exhausted from clinic. And because BT is tired he has a hard doing much of anything. So I was in the bedroom just chilling and he decided to get an ice cream from the freezer and, in standing up, lost his balance and fell over. Now he falls a bit. Not as much as he used to but it is not uncommon sadly. He is stubborn and the loss of independent and of always asking for help does not sit well with him. And he knew I was tired. And the kids were off somewhere else. And he fell. But this time he hit the wall just right and cut his forehead open. I rolled him from his stomach and just screamed because he was covered in blood and there was a puddle of blood on the floor. So I called 911 and they came and took him to the hospital where he got 4 internal stitches and 8 external stitches and now has quite a black eye to boot.

So yeah. I don't even know anymore. He can't do anything for himself anymore. I feel bad for him. It's a lot. It's so much to lose.

And I am tired. Just so tired of everything.

But I am good in a crisis. I know that much for sure now.

A welcome respite

It's Spring Break and my kids and husband have gone to his parent's house for the week. I only asked for the kids to go since they haven't been to their grandparents' house since last summer. But BT decided to go along too. It's hard to say if he'll get to go back. His mobility is severely limited at this point and he'll need a lift soon for bathing and dressing. He can barely stand at this point, can only walk a few steps holding onto a bar. He has trouble feeding himself and his swallowing and breathing have been deeply effected. So things are not going well. I have to bathe him and dress him and more and more feed him. He needs a daily caregiver since I have to work and I am trying to get him one. But as for now he is home alone a lot and it is worrisome. So it's good that he went to his parent's. I think the change of scenery and the opportunity to go to their house was a good one to seize.

Personally it is a good moment for me as well. Caregiving takes a toll on me. It's weird because I don't devote all my time to him as it is. I still do my workouts and runs and take that time. But when I am home there's always something to do for someone. I realized that the first night they were gone. Not having to cook supper for the family and clean it up and clean up after other people. Not having to feed someone or watch them struggle to feed themselves. Not having to bathe or dress or put someone else to bed or the constant constant need for me provide assistance and get things. The realization that this will never go away as long as BT is alive. It will only get worse and more and more. So time like this is necessary for me. It also makes me realize more what things have become now. What kind of life we live now. I'll be honest. It sucks. It sucks so much. I saw a thing on Twitter about the privilege being a caregiver and I just don't feel that way. And that makes me feel bad. Like I should be better about it. A better person. It's not that I don't try my best and do what needs to be done. It's just that I am overwhelmed easily by caring for all three of them especially given that one of them was suppose to be my helpmate and help care for our children and now he needs the most care of them all. But they will still manage to stack up on me because they are still children and still need their mother.

So it's a welcome respite for me right now. But a double edge sword all the same. I'm just trying to enjoy it though and take it in one day at at time which is how I try to live my life anyway.

Word of the year

Some years I pick a word to define my years and some years I let the year pick the word. In 2016, the word became Grateful after Ben's diagnosis. In 2017, I choose Bravery and made it the Year of Being Brave. I learned how to swim, relearned how to ride a bike and started doing triathlon. It was a successful year in terms of fitness and trying new things. But then I let 2018 go and the word became Survival. And that is not good. It was not a good year personally, in terms of goals and BT's illness, and with my whole life in general. Every day I was just glad to have made it through the day. I threw a 40th birthday party and got no joy out of it. We went to Disney World and was miserable the whole time. My depression and anxiety took over everything and I didn't realize it until the year was ending. Several of the support systems I relied on quit for various reason unrelated to me but it turns out that was very bad for me mentally. Another support system experienced a major life change and that caused a few issues as well. No blame is involved and things just happen but it also made for a very bad year. BT also had a rapid downslide in his symptoms

One day talking to my best friend, I remarked that 2019 was also looking to be a very bad year. I realized later I was already writing off the entire year before it even started. So I sat down and wrote down 10 things I wanted to see or achieve in 2019. Mediating and being more mindful was at the top of the list. I've been using the Calm app on and off for a couple of years. So I've dedicated this year to doing at least 10 minutes of mediation every day. I find that mediation helps manage my anxiety and depression very well. There are also guided mindful runs on another app I use. I want to bring being more mindful into as many aspects of my life as I can.

I also recommitted to fitness because that was one of things that started to fall apart for me. I want to work on making sure all my relationships are healthy for me. I want to manage my relationship to Ben's ALS better. He is not doing well anymore and there is more and more for me, it feels like. We have to find a daily caregiver for him now. And that is another new and unwelcome change.  I want to try 3 new things this year. So I am trying to fix the blahness that resulted last year. I don't want to go out too hard though and burn out at the beginning of the year like so many people do. It's a marathon, not a sprint, after all.