Husband's last camping trip

Husband's last camping trip

Friday, April 6, 2012

You've cone a long way, baby

Survived my first order with a Medical Supply Store. I had called Humana/Medicare to ask if they would pay for a lift to be installed on my car for husband's chair. Unfortunately, they do not. But, said they would pay for a wheel chair. Was unaware that you need a prescription for said wheelchair. So, I learned how to order, what steps to take and, now that we're in the system, next time will be easy enough. The wheelchair will be delivered today.

I have learned that when you need to contact someone in the medical field, always, always tell them you've never had the "opportunity" to be in this situation, please bear with me, I have questions. In my case, it has opened doors for me and I have learned a lot.

When your spouse (or any loved one) is dealing with a terminal illness, the surviving family member suddenly becomes chief cook and bottle washer. Everything is put on that person. Everything.

What I have learned in the past 2 years, is incredible. I surprise myself at times. It feels good to accomplish things I never thought I would have to face.

After everyone had gone to bed last night I got to thinking over the past few years. What we have faced and what we are facing now. It all started with searching on the internet. Then, it was to our primary Dr. Next stop was Neurology. A battery of tests lasting 4 months. The day I will never forget, Diagnosis Day. And, just 2 weeks ago, Genetic Test Results.

It's been quite a journey these last few years. We have our answers, we have a diagnosis. We now live with this hovering over our heads. I wish things were different. I wish I was wrong about all these signs and symptoms. I wish he wasn't going to die.

I've come a long way. If you were to tell me 5 years ago what I'd be facing now, why, I would put myself into a corner and turn inward. Funny how life is though. The sun comes up and goes down the same way it did before this nightmare began. Life goes on. I now live a different life. I deal with life & death each and every day. I watch as my husband slowly looses his life. I will experience my youngest child leave the nest in September. He will, in all likelihood, never see his dad alive again, once he leaves.

When this is over with and I am left to deal without a husband, the sun will come up and go down same way it has has done for thousand of years.


  1. So sad but true. Life goes on no matter. It is hard and wil get harder. I pray for you each day for the strength to get through this. (((((HUGS))))

  2. It is odd, isn't it, how it is the hard stuff that reveals the best stuff within us. You are being revealed to be an amazingly strong and compassionate woman.