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.

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.

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.

The art of giving up (and then not)

I have a few people tell me lately that I'm an inspiration. I don't especially feel like an inspiration. I'm just doing what I do. Most of the time lately I just feel tired. Mentally I have a lot going on and I'm on a break with most things right now trying to figure myself out. It can be a lot and I'll complain sometimes about the ALS and what it's doing but I try not to. People tell me I have every right but I don't think I do. It's not happening directly to me though I do have a one-on-one relationship with it. I likened it to when you are driving and you see an storm coming up and you just know that you are about to get slammed. I can see the storm. I can't avoid it. I just don't know how far away it is or how fast I am going towards it. And, yes, it is directly happening to my husband but once we really get in the thick of it, so much will be up to me. Just how the morning routine will change alone is enough for me to know how much will be up to me. I'm not good with change. I tend to be slow to accept it. I try to make the same as it always was but that's not healthy. That's not how life works.

So I'm on autopilot a lot. This is how the morning goes, this is how the day goes, the evening, etc and very often lately I'm not reacting well to any changes in those routines. I'm making it harder than it needs to be but I just keep wishing everything was the same. And it's not and never will be.

I did a second half marathon a few weeks ago. I beat my first time by 5 minutes and felt really good about the whole race. My goal one day is to do a half without any walking. I did 12:1 ratios and then mini stops at the water stations. Next time I'm going to try just stopping at the water stations and see how that goes. I have a thankfully shorter 10k in April that I'm racing for Team Gleason and then no real race plans for a while. I know of a few in the fall I want to do but no distances decided yet. Well except there is a run-paddle duathlon that I desperately want to do. Anyway, I took a week off of running because I was trying to avoid burnout and did other workouts instead. I got a new bike that I love but I hadn't had time for and then there was swimming. I also thought it would be fun to do a spin class. And that fucked me up. I'm not sure what happened but when I tried to go out on Sunday that run turned painful about half way through the 3 miles. I finished it out but it was rough and now I'm scared. Tuesday I started to have a mini nervous breakdown about life frankly. It was pretty bad. And one of the things I keep saying is that I'm just going to give it all up. Forget running or triathlons or swimming or any of that. I won't do it anymore. I just wanted to quit. So much for being someone's inspiration. But I stayed home on Wednesday for a mental health day and somewhere in the morning decided to take my bike out. When I got home, I told BT that I really like exercising. I like the accomplishment and how I feel and I look. And he rolled his eyes and said he already knew that and that he wasn't surprised. I'm still scared to run. I'm planning on trying with a 2 mile when I get home. I haven't been to swim all week but I'll go tomorrow. But I did ride my bike a few times this week and keep it fairly easy actually. I skipped all strength training and have been just laid back. I pile things on things and sometimes I have to just stop. I'm pretty sure Ferris Bueller says it best. I have to readjust how I feel about things and about how I take them in. And though I feel selfish, I have to do things for me. That's how life works.

Selfish

I can't stop getting sick it seems. I honestly can't remember the last time this happened but January came at me hard and it's continued into February. As I'm typing this I feel so horrible. I had a viral infection that turned into a sinus infection and then I got better. Or so I thought. Because I'm back down with a monster cold and I've pretty much stopped any hard core cardio. The internet tells me I can run with a cold but my body says no, don't do it. And frankly since I'm not an elite athlete, I think I can take the time off. I'm probably going to skip my long run on Sunday which makes me feel super guilty but I have got to get well. I'm a little worried about the half marathon I have in March but I'll manage and probably only train up to 11 miles but it's fine. I have so many other responsibilities beyond running that I need to be well for those things over anything else.

Somewhere I decided that this was going to be year of bravery, a year of learning and trying new things. I think I hold myself back and I don't want that anymore. A lesson that has come from my husband's terminal illness is that I don't want either of us to die saying "I should have." I want us to have lived our best life. And some of that is together and some of that is apart. I have a bucket list of things I want to do with him. I want to look back and say we made the most of our time together. I want to have no regrets that I didn't try to maximize our time together. I told a few people the other week that I feel sorry for anyone who has to say at his funeral that they wish they had come visited more or that they wished they had done X,Y, or Z. Because the opportunity is here and now and there is no reason to not take advantage. I won't be one of those people. I know that 100%.

But beyond my husband is me. I feel like this need to try new things is my way of maximizing the time I have where I don't have to be his caregiver all of the time. One day I know things will be harder. He will need more care and time. The things he does now like cooking dinner every night he won't be able to do anymore. So in a way I'm taking advantage of the stage he is in now to fulfill my own personal bucket list. Swimming was a start and I'm so happy I started that even if it is part of the reason I am sick now. I've added kayaking and spinning and baking to my list. There may be a run-kayak duathlon at the end of the year I'd like to do. I'm taking a spin class next week and one day I'd like to sign up for a cake decorating class. It seems this year's mantra is Why not? All the excuses have gone away. Here and now because the future is so unpredictable.

But this newfound bravery does leave me with the feeling of being selfish. A part of me feels like I should dedicate all my time to my family and to my husband. I'm mean he's sick, like really sick and I don't know how long I'll have him like he is now or just how long I'll have him. Am I really maximizing our time when I go off to swim for a couple of hours a week? Shouldn't I be with him watching the kids and making sure everyone is okay? Everything I've read on caregiving says that the caregiver has to take care of themselves first. Because it is a hard thing to do and also very easy to get lost in the process and I don't want that. But I don't want to be negligent either. Running is easier in a way. I can just lace up and go run outside. I don't have to do races or anything that would pull too much time though I'd like to continue and I don't think it will be a problem. Anything I have to drive to seems like I'm asking a lot. I don't know why. But there has to be a balance somewhere, right? I wonder how other spouses or caregivers handle these types of things. BT doesn't mind me going. He understands my reasons why. It's all an internal struggle that makes me feel like choosing myself is somehow not choosing him or them. And that's not the case at all. I just don't want to come to the end of my life and say "I wish I had." I want to say "I'm glad I did."

Bravery

At the end of every year a friend of mine asks on Facebook what your word for the year is going to be? In the past I've chosen words at the beginning of the year only to find at the end of the year there is a theme but maybe not based on the word I've chosen. I don't know what I would have chosen in January 2016 but I think the word I walked away with in December was "grateful." Because I learned the hard way about taking things for granted and for not appreciating the simple motion of life.

So do I pick a word for 2017? I don't have any real goals or resolutions. The health goal that everyone inevitably picks is pretty much taken care of for me. I run 3 or 4 times a week and do cross training exercises at least 3 days. We eat healthy and have significantly cut out processed foods. We could cut down on electronics but I'm not worried about that. I think I learned last year that you can't predict what can happen in a year and I'm not comfortable making a long-term goal. Sure there's a race I'd like to do at the end of the year and a vacation to go on this summer but mentally I'm not going to deal with those things until I need to. I think because I don't know how BT will be in a month, much less 6 months, I don't feel like I can go too far into the future. I'm very much in a "here and now" state of mind. Do what needs to be done now.

That being said, I would like to learn new things this year. Last year I hurt my foot and spent 3 weeks not being able to run. I did other work outs, usually taking BT's trail bike out or doing workouts from the Nike Training Club app. I like cycling but I hate that trail bike. It's heavy and not fitted for me. I wanted to buy myself a proper bike with Christmas money but I needed new running shoes and then a new phone so that was the majority of the money I got. So the dream of a new bike is on hold for now. Anyway, one of the things that I wanted to do when I couldn't run was take swim lessons. I can swim in the sense that I had 5 years of swim lessons as a kid and can keep myself afloat and alive. But I'm not a good swimmer or a strong swimmer and I'd like to learn how. I looked into it at the time but BT was still working and it was about the time things started to fall apart so I never went. But now I want to. Swimming is excellent cross training for runners. It's low impact and would, I think, help me with the last 25 pounds I want to lose. Yes, I know #strongnotskinny and the scale doesn't matter blah blah blah. But still I have extra weight that needs to go and swimming is excellent for achieving a leaner body.

The problem is all mental. I am painfully shy and introverted. I hate new situations and doing new things in front of people who know what they are doing. I am very afraid of embarrassing myself. I know the truth is that no one cares. That everyone started somewhere. My first 5k took me 38:36 with a pace of 12'23" and now my personal best is 33:37 with a pace of 10'49". Still "slow" but I'm getting stronger and faster and honestly my only goal is to run a 10 minute miles someday. You improve as you go. That's how these things work. So I know intellectually that my fears are unfounded. I'm not going to be judged on not being good at something that I am admittedly not good at. That's why I need lessons and why I want to learn. I was thinking the other day that I will be 39 in a few months and how do I want to spend my last year in my 30's? I want to learn new things. I want to try new things. I can't take anything for granted anymore so I want to do it all. I want to help BT live his best life now and live mine too. We have a finite amount of time together and I want us to enjoy as many moments as we can.

So Bravery is the word I would pick. It's going to be a year of hard things. Hell, it's going to be a life of really hard things from here on out. And I want to brave for all that is to come. And it's a tiny thing in the face of an overwhelming illness like ALS but I want to take a step forward and do something new just for me just right now.

Grateful and thankful

Now this is a story all about how
My life got flipped-turned upside down

No, I think that sets the wrong tone. But really this is the story of how I learned to be grateful, why I am feeling particularly blessed, and how I figured out that even in the face of tragedy, especially in the face of personal tragedy, you can find a special kind of happiness.

It's a longer story of how he ended up there but the short version is that summer 2016 BT ended up a neurologist who sent him for extensive MRIs for a series of symptoms he had been presenting: uncontrollable muscle twitchings (fasciculations), balance issues, progressive muscle weakness. If you google these things together, ALS is one of the worst case scenario diseases that come up. But it's never the worst case scenario which is what I told him when he would bring it up. Parkinson's, maybe MS but ALS is terminal and it's never the worst case scenario anyway. But it was. Because of course it was. I didn't go to the doctor with him to hear the results. But when he called me to tell me I assure you, I did not comprehend everything he was saying. One of my friends knew that the results were coming in that day because I had been jumpy all afternoon and he happened to call right when I got off the phone with BT. I remember just sobbing into the phone and him telling me to get it together because I could not do that in front of the kids and I said "This moment, right here, this is when I get to fall apart. Because when I walk into that house I know I cannot do this. But I can right now. This is my moment to do this." And I did. I will forever to be grateful that I had someone who calmly listened to me fall apart and talk me through one of the worst moments of my life.  But then I lost it completely when I told my mom in the garage. The simple act of telling people this kind of news becomes easy but it also chips away at you. I don't know how much I've lost of myself in relaying the news over and over.

He was sent to Baylor for a second opinion. In between, we celebrated our 12th wedding anniversary bringing our total number of years together to 18 thus far. Between the two appointments I was working the reference desk and a student came to ask me for help. Noticing my wedding ring he asked how long  I had been married.

Me: It's funny you ask. It will be 12 years next week.
Student: Wow, 12 years that is so long. You never hear that anymore.
Me: Yes, 18 years all in all.
Student: That is so amazing.
Me; Yes, I have been very blessed.

 Something in that conversation was a revelation to me. I had spent the better part of the two weeks since the initial diagnosis crying and bemoaning the circumstances but this brought home the fact that I had been very lucky. I don't believe in soulmates but I would say that BT was made for me. We're just a match. And it hasn't always been easy and we haven't always gotten along but I think we were just meant to be together. And to be maudlin, if we only have 20 years together, then there is no better way I would spend those 20 years.

So the diagnosis was confirmed thus ending everyone's hope that it was maybe something else. He couldn't go to work anymore and had to learn how to stay home which was not easy for the hard worker that he is. There was more falling, more muscle weakness, physical therapy, and foot brace. It felt like something new and something worse everyday. I had a moment when I thought maybe he was at a plateau and maybe it wouldn't get any worse and we could deal with this and then something happened, a fall or his left leg started to feel weaker or something and I knew I could not believe in a miracle. That it would crush me and I'd never recover if I believed and that miracle never came. Acceptance is not resignation though. I just know that I have to do what needs to be done and I want to make sure he lives his best life. And the miracle will come whether I believe or not. Because that's what makes them miracles. But I know for a fact that I am extremely lucky and so very blessed. And what gets weighed down in everyday life and gets taken for grant is so crystal clear to me right now. I could write a million words on how horrible this is and why everything sucks and why why why. On the future that has been lost and replaced with the likelihood and terribleness of being a young widow with two kids. I don't look into the future so much anymore. I couldn't even begin to plan it and it doesn't look like I want it to so I try to stay right where I am. To do what needs to be done now. To enjoy every moment. To be grateful and thankful for everything I have. That is the best place to be right now.