This is a post from another caregiver I've come to know whose spouse has ALS. They've had ALS for a year longer than we have. While our situations aren't exactly the same and I did cut out a few paragraphs that didn't pertain to our lives, he sums up so much of the frustration, guilt, sadness caregivers feel each day. It's a tough read but an important one.
FYI - as you read this, PALS means Person with ALS.
I have thought for a long time that this must be what a soldier in battle feels like. The events of each day are completely out of your control. There is no indicator of what will come next and when. There is unrelenting stress and anxiety in dealing with the responsibility yet you need to remain calm, focused and stay on your toes.
You don't sleep, eat, take a shower or use the bathroom when you want, you do it when you can, if you can. You are physically and emotionally exhausted all of the time and there is some part of you that is always sore. And like any soldier will say, you can't explain it unless you've been there.
On top of all this. I don't have my spouse anymore. I mean, physically I do, but she is now my full time task. I don't mean this in a burdensome way, but in a matter of fact way. And it's a real pisser when you realize that the only person who can help you get through it all is the person who now has ALS.
Your role is now caregiver, not spouse. You are there to serve them.
You also get to simultaneously wonder about your own life and your future. I left work to stay home full time. I am on unpaid leave, but how long is anyone's guess. Is my company going to do this indefinitely? Not likely. How long will they go? I am going to be 53 this week. What if I am out of the job market for 5 years? Can I get another job? Will I be able to retire like I planned? Will I die alone?
Those are all valid concerns but rest assured, you can't mention it to anyone. Then there's the pall of ALS hanging over every aspect of your life. Your home, where you once shared so much enjoyment and was your source of "coming together" is now full of medical equipment and seems more like a hospital ward than a home.
Your friends with ALS die and you deal with the specter of death every day. Every freaking day.
You become someone you never were and never want to be and the only suggestion anyone has is "you need help." No really, I don't because help is work too and it's up to me to manage all that. My spouse can't speak.
Can I ever leave her alone with someone? And when/if you do have help, you're always on the clock. I have X amount of time to X amount of tasks. It's not downtime or is rarely downtime. You now have time to get done everything you need to get done. If your help can't come for some reason, it's you, it's ALWAYS you, who must change or cancel plans for that time to accommodate your PALS.
You get to have all these thoughts knowing that tomorrow you're going to do it all again without resentment or making your PALS feel like a burden or a chore. You love them and you want them to know you have their back and in this time of their life, you can be counted on to come through ane be everything you can be for them. Then you'll do it again the next day.
The quote I added is intended for someone experiencing a loved one's death. I included it because in many ways, I mourn the life I used to have with Luther. The life I should've had, the life we planned together. The weird thing is it's like a little death each day. It goes on and on.
To lighten the mood a little, I will say it has brought us closer together. I'm not dragging myself through each day in a state of mourning -- it lurks below the surface, for sure. You have flashes of sadness. It gripped me the other day when I was shoveling rock, of all things. I can't even tell you why it hit me. I was alone, outside and it felt like someone was squeezing my heart. I cried for about two minutes and moved on.
I had a conversation with the person who wrote this and he had this "aha" moment... this scary moment of how long will this go on? How long can he sustain being a full time caregiver? For them, it's been 3 years. You get mired in the day to day and suddenly, 3 years later, you look up and think about your future. How can you look at your spouse and say I'm worried about my future? They think, hey - at least you have a future.
It's a tough tight wire act. Balancing between being the world's greatest cheerleader and feeling like you're going to crumble at any moment. You find that middle ground. It's a tenuous and frail place to live... within that odd space - like the eye of some sad hurricane - you find this amazing strength.
Ok - I'm taking off my super hero caregiver cape. Hahaha! Superhero. Far from it. Tired wife cape. Time for bed. I tend to wait until I know I will fall right asleep. The worst is lying in the dark letting the demons dance around in your brain. I think I'm there. I just tucked Luther in bed, now it's my turn. Sweet dreams, everyone.