ALSCaregiver.com

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.

An update to this post is at this link.

A while back I wrote about the BiPAP machine that mom got to help her breathe at night.  We finally found a mask that worked ok because the nose pieces weren’t working at all, but today she told me she isn’t going to use it.

My mother’s greatest fear is suffocation.  Apparently, if you don’t get enough oxygen, carbon dioxide builds up in your brain, diminishing certain sensations and fears.  If she uses the BiPAP, she’ll have oxygen pushed in and carbon dioxide pushed out.  If there came a time when oxygen had to be turned off, she would know exactly what was happening.

It’s hard to describe the processes, thoughts and problems that can go on when someone finds herself in a motorized wheelchair.  It’s hard because we don’t go through it – the patient does.  While I can’t tell anyone that “things happen for a reason,” I do know that those happenings can be useful in the end when they happen to a caregiver.

A couple weeks ago, I got nailed with plantar fascitis in both of my feet, with some Achilles tendonitis thrown in on the right leg.  Mom had left her motorized wheelchair at the house while she went on a cruise, using one that was rented at her vacation spot instead.  So I got to spend a week using it and let me tell you, it was an experience.

One of the most nefarious things about ALS is that it never stops progressing.  You can have periods of “same-time” but inevitably things begin to move again.  It’s very easy to let yourself get lulled into a sense of security in those times because, while the disease is still progressing, it is doing so slow enough that you don’t notice it much.

Then you realize one day in one fashion or another that it’s gone farther than you thought.

We now have a new machine in the house – the BiPAP.  What in the heck is a BiPAP?  “BiPAP stands for Bi-level Positive Airway Pressure. It is a breathing apparatus that helps people get more air into their lungs.” (Wisegeek)  Essentially it helps mom out when she’s feeling short of breath.

It’s an interesting little gadget.  It tells you how much you’re breathing, it will shriek like a banshee if it has to do more work than it’s supposed to (ie. if you aren’t breathing on your own) and it adds a lovely “strangled robot” sound to the room.  No worries though – it’s not distracting and you get used to it.  It even has a water tank so you can humidify the air you’re breathing if you feel so inclined.  That can help ward off dry mouth and dry throat.

A while back we put longer door knobs on our interior doors so mom could open them easier.  Lately she’s had a problem getting them to close because of problems getting the wheelchair to move well in our small hallway.  I bought a small clip and tied it to the door handle but the stress caused the door handle to pretty much fall apart.  To solve the problem (and not shell out a whole lot) we used the same setup but got a $1.50 hook to screw into the door.  Problem solved.  And it doesn’t look too bad.  With more time I’d tie it a little better for looks but that it works is what mattered.

Caregivers deal with a lot of grief. There’s the grief of knowing your loved one has a terrible illness, the grief of being unable to fix it and, eventually, the grief of loss. This article is about how grief affects the bereaved and how it affects those close to but not directly involved in the situation, whether they are friends, coworkers or neighbors.

Experiencing Grief

Grief affects different people in different ways. Some are able to work through it fairly quickly while for others it takes a great deal of time.