Happy Independence Day. As I walked home alone from the neighborhood fireworks display, I realized how lonely it has become as a caregiver spouse. All the families were bunched in groups. They were happily engaged. Usually, people engage in friendly chatter with neighbors, but not this night. I sat alone. No one said much at all.
The night’s cheeriest greeting came from a kid as four young boys rode past me in the dark. He whooshed past me and called out Happy New Year.
I replied in kind. And smiled. For every single day can be a new beginning. If we let it. If we continue to wake each morning knowing that today is a new day. And for me, it’s all I’ve got. One new day after another. What that simple call out of a Happy New Year wish did for me was more than any fireworks show: it put a smile on my face. I knew that not only would tomorrow come, but the lonely night was at an end. All I needed to do was limp the remaining blocks home.
Lessons learned are hard to face.
Living with a spouse who suffers from a little understood, chronic disease means a life filled with philosophical lessons learned. It has destroyed me. It has taken too much. I do what I can but it’s never enough.
While I put me aside to help him, I didn’t find the focus needed to build what I thought would be a fun and fruitful business. I didn’t find that new job either. I’ve been caregiver, advocate, business builder, job seeker and more for 8 years — much has been lost including dreams, friends, family…
Really, I did what any loving spouse would do under the circumstances. You just do what you can to help that person — whether it’s a week or a month or a decade, you do exactly what I’ve done. If you are lucky, you can hire help and family shows up to give a hand here or there. I’ve talked with many who agree — you do whatever you can.
No amount of healthy eating can change a disastrous illness. He can’t trick this thing into submission. A lifetime of green juice and avocado doesn’t cure it. Eating healthy for the sake of good health is but one way to help oneself.
Accepting that diagnosis pushed him off the health wagon.
I can’t fix it. Screw it.
There comes a time. That time is now. It’s just time to take my life and rebuild it.
No amount of platitudes relieves the constant worry which I so ably push aside to deal with the moment or the day. No amount of healthy positive attitude interrupts this cycle of hell. No amount of meditation, writing, exercise, or gratitude fixes what’s broken. And yet – it’s what I have to cope. It’s easy to stay in a weird form of denial, but one can’t swim upstream forever. Not without help. Not without a life raft. I need that raft NOW.
Coping skills are strong – I’ve been doing this too long. The only thing I really know is that my expertise in healthy living feels like a bunch of lies.
In ten years, he’s not gone more than 2 months without a relapse. I don’t know which person shows up for the day. What I do know is my encouraging words are now empty zones. I can say something or not. If he wants to eat comfort foods like an opiate, that’s his choice.
The truth: It’s time to just turn it all over to God – God as I UNDERSTAND HIM – a higher power that is not me. I learned a different concept of Spirituality. It works for me. I’m not in control. I don’t need to be converted from my origins. I don’t need a new religion. It’s always interesting how some want me to change my religion to make them feel like they’ve done something to help. And when I stick to my origins, they practice exclusion. Actually, it’s not interesting. It’s annoying.
When the caregiver is burnt out, there is nowhere to hide.
What sucks most is what I pondered yesterday. I finally got the big lesson learned. It’s not the loss of family. It’s not the loss of friends. It’s not even the loss of activities once loved and many once shared. It’s the loss of independence! That’s what it is. So yeah, Happy Independence Day!