Monday, August 10, 2009

Catching up

Hi Everybody,
I apologize that it has been a while since my last post. It seems there is never enough time in a day to do all that you want to do. With hospice care, we have somewhat of a new pattern and it is still taking some getting used to. Somehow, I don't feel like I have any more time than before, but maybe that is because business ventures are keeping pace with any extra time I may have had, and so I suppose that is a good thing. H's "bed baths" are a comfort to her to not have to deal with transport and sitting up in the shower and although I was fine with giving her her showers, I could see how it was becoming very hard for her to sit up for that period without the support she needed.

Right now, our biggest hope is to get a wheelchair that H is comfortable in enough to go out for a bit. Neither of the electric chairs really work for her anymore and now we just really need something that fits her and is comfortable for an extended period of time. We are working a few angles now. It is so sad that insurance companies won't help in this regard, when it is something that is so necessary for comfort in our situation. By the same token, the companies that provide the chairs overcharge so ridiculously that you can almost hardly blame them. As an example...$7,000.00 is the price tag for a Manual wheelchair that has the necessary support and features. It is ridiculous.

I ran across a chair on that would probably work and it belonged to an elderly gentleman that also had als and passed about 3 months ago. Apparently they paid (or their insurance did) $6,800 for this chair that he used for 3 months or so. They are still hoping to get $5000.00 for this chair, which I consider a pipe dream, since there is no real market for medical companies to re-sell these chairs. I paid something like $900 for the initial electric chair that I got for Heidi, which worked for quite a while because she was strong enough then to deal with it. The original invoice on that chair was something like $21,000.00 and when we took it to the medical company to re-size it to her, it was going to cost $14,000.00 additional dollars to do that. Talk about a shameful racket. These people should all get a glimpse of what is on the other side of their "business" and maybe they would stop this madness.

In the end, I hope that these folks in Castle Pines will donate their chair to ALSA or a similar organization so someone can use it. This is what we plan to do with all of our equipment once it is no longer of use to us.

I know you probably expect more from my posts than this, but of late I have not been much inspired. It seems like we are in some type of holding pattern with nothing to look forward to and nothing additional really to fret about. Certainly there are some things that are no fun, but I'm not going to elaborate on the negative here.

It has been nice having some family in town and the girls are exhausted each day, which means for easy bed times and good night's sleep. School is back in session, so the days will be somewhat easier for me minus the "entertainment" factor.


1 comment:

  1. There are 2 organizations that may help pay for the chair that Heidi needs. One is MDA. A quick phone call and an easy form to get registered and they will pay $2000.00 toward any durable medical equipment for ALS patients. Next is friends of man.
    They help pay for all sorts of things including wheelchairs. Hope this helps.