Tuesday, February 7, 2017

Taking a breath, and moving on

Thanks for commiserating with me over the massive amounts of money we threw at medical expenses last year. I wish I could say it was unusual. But for the past 23 years - since the diagnosis of DS - it's been the norm. While we have what most would consider a really good, solid income, it has never felt like that to us.

We have good health insurance, but good insurance doesn't cover much of the equipment needed to get through the day with a physically disabled family member. It's ironic that when DS is in the hospital, the cost to us is nothing. Insurance covers 100%. But when he is at home, we shoulder a burden that impacts us greatly. By caring for him at home, we save the system millions of dollars but put ourselves at financial risk. It's a dark side of the system that hasn't been addressed and about which many aren't aware. Since we will not put him into a nursing home - where all his needs would be covered - we will keep plugging along.

Last year's out-of-pocket medical expenses totaled $48,000. Beyond the usual co-pays and 80/20 costs, that includes nearly $20,000 for caregivers; $6,000 for a ceiling lift so we can safely move DS from bed to chair to bathroom seat; the cost of caring for his service dog and repairs to everything from his wheelchair to the ramp leading into our house. Note: the ceiling lift was considered non-essential and so was not covered at all by insurance. Home adaptations, including a ramp to enter the home fall into the same category. I've long since given up trying to figure out the logic in that thinking.

I have learned to be super organized and keep a record for every single medical expense, no matter how small. I am meticulous about the mileage when traveling to medical appointments and ask for receipts when I have to pay for parking at the hospital. My work pays off at tax time, when I can produce proof of what we've spent and why.

So, yes, we will be receiving a nice tax refund ... which is already earmarked to take care of the crumbling bathroom with the leaky faucets that the plumber said are so old they can't be fixed. (It also has mustard yellow tile, circa 1972.) It would be great to throw the refund at debt, but sometimes other issues take priority.

Onward and upward.



  1. Ooh mustard yellow isn't' that coming back and when you live with men you wouldn't have to worry about misses? I feel for you, know one knows unless they walk in your shoes.

    1. Well, there is that. Of course, it's also harder to spot the messes so it never gets clean :)

  2. I'm glad you're getting some of that enormous outlay back!! Mustard yellow - ewwwww!

  3. The house we sold a year ago had a Tuscan Sun bathroom. Okay, so it was really Mustard Yellow. Tuscan Sun just sounded better. It was the one room we didn't get around to remodeling. The fixtures were all in mint condition, so aside from the expense, I never wanted to rip it out.

    Glad you are so fastidious about tracking expenses and for doing so, will get a good return. I have a close friend who has been taking care of her son for almost 30 years. A true show of love!