ALSCaregiver.com

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.

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.

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.

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.

One of the hardest things for me to do, besides coming to terms with mom’s ALS in general, was to learn what I needed to do for myself.  Being a caregiver can be a wrenching experience but there are a few things you can think about that may help.