And the kids

Once BT was initially diagnosed the question of what to tell the kids was immediate. Obviously something had to be said since BT would no longer be working and they would definitely notice that. There was a month gap between the first and second opinion where everyone just kept hoping that it was going to be something else and BT was still working. In that gap I consulted our pediatrician who has cared for Bub since he was a newborn. It's one of the few times I've ever seen a doctor visibly upset. I asked him what was appropriate to say.  He recommended a simple explanation but not to include the fact that it is terminal. Bub was 9 and LG was 4 at the time. We told them that Dad was sick now, he wasn't going to get better, and that he wasn't going to work anymore. Their reactions were very accepting. LG went around telling everyone that her dad was sick and wouldn't get any better. Bub was sad and asked more questions. It was a different way of processing fairly appropriate to their ages. As time has gone on, Bub has begun to ask more questions about BT's condition. LG has been more accepting. They both have been big helps to their dad although still expect a lot more out of me somehow. It's been also a sad thing knowing what's to come but there is a lady we know who grew up with a father with ALS and she talks more positively about her experience so I feel like the time BT spends with his kids will be hopefully result in something similar.

One day recently Bub asked me about how long we would live. I talked about the average life span of my grandparents and guessed 30-40 more years for me all things considered, hoping that he would drop the subject of his dad. He did not and I answered with Well it depends on how his ALS progresses and then he asked if the ALS could kill  his dad. I never want to lie to my kids but there is information I don't volunteer unless they ask. So I answered yes but that it all depends on how quickly things go. There is no time limit. These are the moments that I get, that no one else gets and they are sad moments. He took this pretty well and he has been processing, I believe, fairly well. And has been very good to his dad this summer. I hope that this summer and the summers to come where he is home with BT are good, positive memories and that they have quite a few more.

A bit about caregiving

There's a lot of (unnecessary) guilt around my house. The thing about this kind of illness is that it robs so much from everyone. Someone who was once very independent now needs help with the simplest of tasks like opening a can or toweling off and dressing after a shower. It's a lot of adjustment losing abilities. But also an adjustment for me picking up more care for him. Before it was a lot of joint care for the kids. Now it's that plus what he use to do for them and all the new stuff that he can't do anymore. Right now at least he is doing some of the other stuff like reading with LG and still doing some of the easier cooking though he is teaching me how to cook some stuff. But that's another thing. BT's ability to cook is diminishing and so I have to take on more of that. It's just more and more. I have a good support system in that my parents live by and are willing to help out. Among the many things that they do, my dad drives BT to his infusion treatments that take place once a month and does yard work. My mom gets the kids after school and takes them to their various sports activities. So that is extremely helpful and eases my responsibilities. They have been a tremendous help and there is literally no way to repay them.

I'd like to say that I've been the picture of grace about all of this. I have not. I have tried my best, my very best. But it's been a hard road of acceptance that continues on. Every time there is a down slide it gets rough. I wish I could be like the other caregivers I read on the internet, the ones who say that they accept it, that their spouses are their reason for being, that they love being a caregiver even if it is stressful. I don't know if it's words for the internet because no one likes admitting the ungracious side of themselves or if it's true. It is not for me. Maybe if we were older or our kids were grown or if we had managed to do more of the things we wanted to do together but this is not what I wanted, not how I saw things going. And that's obviously true for both of us. The difference is that I saw the future I had envisioned go away in an instance. BT mourns the past and all the things that he never got to do. I mourn the future and how I can't plan for it anymore and how he won't be in it or if he is how different he will be. In 20 years will I be alone or still caring for BT? The truth is the future is hard to predict but before I felt like I could say "Oh when we retire we can do XYZ." I don't feel like that it is true anymore. I try to find something for myself and ideas for my own future. I tend to focus now on the immediate future. What game I want to play, what race I want to do, what vacation we can take next year. I like to have a plan and now that I can't have anything long term I like to at least focus on the short term.

The quest for automation

One of the ways we’ve begun working on to make life easier for my husband is automating the house or at least making it voice controlled. BT’s fine motor control has been one of the first things to go. He has trouble with small objects or anything that requires finite motion. His weakness currently lies in his hands, arms, and legs. So at first we got a Google Home so he could use it for an alarm and to control the thermostat. Recently we added a door bell with a camera so he can see who is at the door and lights that can be controlled with voice commands. It’s a smallish things that help make things easier for him. There’s a few more lights and plugs that we will automate to help around the house. I realize that this is not always possible for a lot of disabled folks. Being disabled is expensive and it is very hard in many ways but instead of birthday presents we get smart lights at my house apparently.

Never not training

So 2 years ago I took up running with Couch to 5k and I’ve done quite a few races; 5ks, 10ks, half marathons as well as 3 super sprint triathlons. I have 1 more of the latter next month and then a sprint tri in October and then I am done for the year. It’ll be weird to be done with the race season so early but I made the decision in March that I was done with long distance running for a while. My last 2 half marathons were torturous at best and I realized I preferred mid distance so 10ks mainly. So I may try to pick up one of those. Anyway. My training this year has felt fairly relaxed. I went hard for so long but I gave myself a break for the most part this year. I’ll have to pick it back up for the sprint since that is going to be longer and my first open water swim. I will admit that there is also something lacking in my training. It’s like the challenge has gone out. I’m not motivated to push for longer distance though I have resolved to do a full marathon at least once after my 42nd birthday. So I bought myself 2 years on that. So what do I strive for? I wish I knew the answer. I do know that I refuse to give up. I never want the day to come where someone says “Do you remember the time you were a runner?” I want it to be “Do you remember when you started running and never looked back?”

I do work hard at being injury free. I’ve found that not running back to back days helps. That the swimming and cycling help. One of the things that has been good is adding strength training but that is one of the areas that I need the most guidance and help.  So I guess there is a challenge.

All this training is interesting in a way. I leaned into it hard as a coping mechanism for my husband’s illness. And not to say that I don’t anymore but that I don’t need it quite like that anymore. I escaped into it but now it’s less of an escape and more of a routine. And I am very attached to my routines. That has become more coping strategy these days though not necessarily a good one since flexibility is becoming more important as time moves on. But exercise and time to maintain a healthy body is necessary for a healthy mindset.

(And if anyone is interested, my instagram is primarily sports related if you want to follow along.)

Where to begin (again)

I started to make a whole new blog dedicated to being a caregiver but the truth is part of me is afraid of placing too much identity into being BT’s caregiver. Truthfully I look for ways to maintain my own individual identity. Yes I am a wife and yes I am a mother and those belong to me but also as me being a part of another.  One of the things that has become clearer to me is the need to have my own identity because one day I’ll be on my own. I decided in the end to start writing here again since this is my personal life blog so there will probably be posts about what is like to care for someone with a progressive degenerative disease. But also about coping and sports and the things I do.

The truth is that life is hard for everyone. I believe in the universal struggle for most people, to be happy, to be loved, to find fulfillment. So I never believe that we are alone or that the thing we face is unique. But it is difficult and a bit unusual.

So since October 2016 when my husband at 38 years old, was diagnosed with ALS, he has gone from being a runner to being mostly wheelchair bound in the short time of his diagnosis. I’m not a doctor but this is an alarming rate to me. And in the meantime I’ve picked up so much of the slack but more than that I’ve gained another person to care for beyond our 2 children. My experiences as a caregiver are not unique but as we are well below the average age for an ALS diagnosis it’s been hard for me to find someone relatable.

Writing about it seems cathartic if I’m being honest though the details may seem uninteresting maybe to most. It’s been hard and continues to get harder. I don’t look to the future much anymore. My motto is Run the mile you are in. I try my best to follow that.