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Active member
Nov 20, 2003
British Columbia
Caregivers in the Later Stages of ALS

Hi Margaret,

My Mom just passed away on Nov. 8, 2003 from ALS. The last 6 months were very tough for her and me. She lost her ability to speak and more recently the ability to swallow.

I never really learned how to cope with the exhaustion, the stress and worry. I just sort said to myself that I would rest when it was all over. (Please note I don't recommend that to anyone!) I didn't realize how burnt out I was until we brought her to the hospital on October 20, for chest pains, that night I slept 14 hours!

I didn't get much of a break, my Mom would get very upset if I were to go out for coffee with a friend so I didn't do that, but that was a choice I made so that I could be there for her.

She never talked about death very much, the only thing I knew was that she wanted to be cremated.

It wasn't until October 24 that ALS was finally diagnosed and she was told that day that she didn't have long left. I don't know if my Mom was in denial or not, I don't think she was. She was a pretty tough woman who had survived many health problems during her short 69 years.

My husband and I kept her company and told her that we loved her. At the Hospice we never left her side from November 2 to November 8. She was kept free from pain and all the other types of discomfort that come with the dying process.

The thing that bothers me very much is that for so long she couldn't communcate her thoughts and I'm sure that she must have had many things she wanted to say, worries and concerns she may have wanted to share. Now that it's over I really miss the sound of her voice and her laugh, that went 6 months before she did.

I hope I have helped a little.

Sonia Thomson
Burnaby, BC
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