Sunday, June 14, 2015


     It seems like a life time ago my other half was diagnosed with ALS. At the time, I was fully prepared to blog my way through our journey. Documenting how we surmounted every obstacle, united, together until the end. I wanted to be open and honest, much like Jennifer talking very frankly abut her husband. Then reality came crashing in, the posting stopped, our voice fell silent.

     There are a few reasons why.

     The most obvious is time. Being a caregiver is time consuming. Strangely enough, I'd be lying if I said this was the main reason. 

     The next would be being overwhelmed. True, but again not the main reason.

     If I'm honest, and I will try to be because I think this is important, the main reason I stopped was a complete and total sense of having failed.

     He's still dying. I couldn't keep him at home. We didn't beat this thing. We didn't manage to climb Everest despite the challenges.

     The Internet is littered with these great, inspirational stories of triumph against the odds and I wanted ours to be one of them.They're are great stories and I wish everyone who is one of them only the best. 

     The problem is, they only represent one side of things. The reality for many of us is very different. We don't talk about that. There is a very real sense of somehow failing in our duty as caregivers if our stories aren't motivational enough, that we have to justify or qualify why.

     For most of the last three years, I've lived with that vague feeling of shame. For not living up to the standard of what the world wants to hear. And for many, it is what they want to hear.

     People don't want to know it's a physical, emotional and financial train wreck. They don't want to hear you're struggling. It seems like everybody assumes there is a quick fix and if not that then at least have the decency to stay quiet. Because they are your problems, you figure it out. There's an app for that, isn't there?

     Let's face it, no matter what the topic, we're inundated with how we should be. Be the best Mom, the best employee, best husband, have the best body, be the best friend. If only you do this you will succeed. Live the fairy tale.

     And it is a fairy tale. Life is messy. There is no one size fits all solution to any problem. I'd say this is especially true if you're a caregiver. Whether you're a SAHM, caring for an elderly parent, or a terminally ill loved one, it seems like there is always someone ready and willing to tell you how got it wrong.

     It's demoralizing and I'm calling bullshit. The only way to fail is not to try.

     For us, it was a lose - lose situation right from the get go; a progressive, degenerative, terminal diagnosis, no treatment options. There is no winning in this scenario. There is no award for best death.

   Our only option was to do the best we could, and we did and continue to do so. If that's not success, I don't know what is.