My husband was diagnosed with ALS on 11/20/2013.
Wife, best friend, partner in crime, side kick and now... caregiver. This is my side of the story.
Saturday, May 16, 2015
A year ago
I wrote this over a year ago. I've come a long way in accepting this life. My life isn't awful, like I thought it was a year ago. My life is different. It's difficult but (usually) wonderful. I've learned so much in this last year about love, moving forward, being grateful, keeping things in perspective and what's really truly important.
I told Luther when he first got ALS that I didn't think I could live up to this illness. I feel the weight of it every day.
I'm back to square one. Actually BEHIND square one. I'm not a decision maker, not aggressive, not organized and linear. I met Luther, a large and in charge guy and wanted him to be a partner in my scattered life. I asked for his help in getting me back on the straight path, rather than running circles over and over, all by myself.
Unfortunately, now I feel like I'm alone again. Chaotic. Uncertain. This life I waited for so long has blown up in my face. There are days I can't get off the couch. I can't pick up the pants I just took off. I keep the blinds shut. I don't do much with friends anymore. I forget everything.
The other day, I was at a stop sign. Down a block ahead was a stop light - the light was red. I sat at the stop sign, waiting for the light a block away to turn green. I didn't realize what I was doing until a car behind me honked.
My brain is on overload so the rest of me shuts down.
I'm not looking for anyone to FIX anything. Getting it out there, just getting it out of my head sometimes, feels better. Generally the moment passes and we're on to something different.
ALS sucks. it's a scary disease. I get mad at my guy for not being able to do stuff. I should rephrase that. I get frustrated with the disease. It's heartbreaking.
I try to rally at times. mostly I do... I have to for both of us. I've shut down physically. It's been over a month since I've shaved my legs. Frankly, the thought of being intimate makes me feel weary. That makes me really sad. Part of this has to do with the fact i haven't shaved my legs in a month.... I haven't taken care of me.
I should be clear, I feel very much in love with Luther and when I look at him, when I'm with him, I think he's the best ever. It's more me - trying to make me feel like I can be his wife. I can be anything more than a robot nurse/fake cheerleader.
Part of it has to do with the fact I'm in caretaker mode so much. I know i need to let that go. I want my guy to know he's still wanted and loved.
It feels all too complex when really, it should be so so simple. Make every day a good one. It's cliche but it's super true.
I try to make each day one that matters. I fail a lot, sometimes because of circumstances - work keeps me away. Plus the whole can't move, can't get off the couch thing keeps me bogged down. Clearly it's my my mood... but I keep the mantra in my head because I don't know when he's doing to die. When he'll be taken away from me. Every day needs to count.
Haha. I can't figure out why some days i can barely string a few words together and the thought of typing anything, the thought of moving or thinking is too much. Then days like today I spill it all out.