ALSCaregiver.com

It’s taken me some time to make this post for a variety of reasons.  On May 10th, my mother, the inspiration for this site, died in hospice.  Even though technically you could say she died of respiratory failure, we know she died of ALS, and hospice was good enough to put ALS down as her cause of death.  Some ALS deaths go unreported because doctors put cause of death down as a complication.  Mom wanted ALS listed, and it is.  She counts.

I first came down with plantar fascitis in both feet (plus Achilles tendinitis in the right foot) in October of 2008.  I was in a wheelchair for a month and still haven’t gotten over it.  I can’t stand up for more than five minutes at a time, I can’t lift anything heavy and I can’t walk over hard surfaces for any kind of distance.  Which means I still get stuck in the scooter at Wal-Mart.  I’ve been stuck in one since I was able to drive again by myself four and a half months ago.

I’ve added a page with video lessons for caregivers.  You can find a link at the top of every page and the left side of every page.  Hope you find it useful!

I wrote a song called “There’s No Place Else” for my mom, who most of you know has ALS (Lou Gehrig’s Disease).  After I wrote it several people said other caregivers would relate, so I posted it on the onewildchristy MySpace for anyone who wants to hear it.  It’s the first song in the player.

I’ve gotten several emails recently from visitors who are dealing with a brand new ALS diagnosis, so I thought I would write a little about what I went through at first.  I hope it’s helpful.

You should also see my previous blogs, especially Caring For The Caregiver.

If your loved one was just diagnosed with ALS, you’ve probably known something was wrong for some time.  ALS causes the body to lose function, so some loss is noticeable ahead of time.  You’re probably a little lost or in some amount of denial.  You might be angry.  All of these are natural human emotions.

I knew it would happen eventually but I wasn’t as prepared as I thought I’d be.

Mom, our friend Margie and my brother Shawn went to Branson a few weeks ago.  While they were picking up tickets, Mom felt that she needed a breathing treatment.  By the time they got to the hotel they had to call an ambulance because she could barely breathe at all.  She didn’t go to the hospital that night, but Margie quickly ran and bought an adapter so the BiPap could be plugged into the cigarette lighter of the van (finally, it has a use).  When mom continued to have trouble, Margie decided that since we had an appointment with the ALS doctor in Little Rock on the 8th anyway, they might as well head on down, so she rocketed down the highway and checked mom in to UAMS.

As an update, I’ll just say that mom has decided she can’t be without the BiPap.  While she does not want oxygen, she has realized that the BiPap helps her breathe without forcing in oxygen.  She hates it, but she’s working with it.  The truth is, we can’t risk being without it at all now, so we’re in a new adjustment period of figuring out ways to still do things and yet have power handy and nearby.  Since I can’t afford it, it’s up to her if she thinks it’s worth it to spend $500 on a portable battery for the BiPap.  I’m all for it but it’s not my decision.