Frustration!

• By msgar1ginny
• Posted April 17, 2008 at 11:39 am

I didn't realize how lucky(?) we were. Cale was retired, had a good pension and Medicare. He also had enough points to get into the V.A. I hope that ALL PALS(people with ALS) and CALS(caregivers of those with ALS) will donate ALL of their usable equipment when it is no longer needed. The ALS loan closets do an amazing job helping Pals til they can get their equipment covered. Thank You for the help you are providing.

• Reply
• Flag for review

• By Charlie3
• Posted April 19, 2008 at 2:12 am

Hi Angel,
Welcome to "our" world. Regretfully I must tell you that you haven't "seen" anything yet. As you deal with this disease throughout its "course" to its final conclusion you'll need those meds.
Wisdom can be gained from 2 sources; 1) the lives others have lived and "passed on", and 2) the life you have (and are) living.
Each has a requirement attached before they become "useful" for the future. #1 requires that you hear, believe, and remember that as "passed on". #2 only requires us to REMEMBER.
You are now gaining wisdom about ALS via #1 and #2.
Pass it on - please.
Charlie

• Reply
• Flag for review

• By angelplus5
• Posted April 19, 2008 at 8:19 am

Charlie:
Thank you for the reply. I actually shared it with my children as something for them to think about it their lives. When I cared for a gentlemen (when I was practicing nursing) who had ALS I learned so much from him. We "clicked" they day that I came to the house and was interviewed by him and his family. He had the patience of a saint, and would watch me fumble with trach tubes and laugh as I asked him to repeat things over that I couldn't understand. He always maintained a sense of humor and was able to look at the bright side of things. I was lucky to have him in my life, even though it was only a short while. We even had the same birthday! He always told me how lucky he was to have me as a nurse and a friend, but I think it was the other way around.
Maybe that is where some of my frustration comes in. I know first hand what he went through as well as what his family dealt with. I cannot comprehend companies being so callous in this situation. Having dealt with it now, it just makes me more determined to make sure that they "get it right the first time" so that maybe down the line there are procedures in place. I realize that for some companies it comes down to the mighty dollar, but you cannot put a price tag on human life. We as a society need to learn to be human and care for one another again. It breaks my heart when I see my patients struggle to get what should be given to them before they even ask. Again, I think that my frustration just strengthens my resolve so that is the silver lining in this for me.

• Reply
• Flag for review

• By angelplus5
• Posted April 19, 2008 at 8:22 am

Good morning! I am glad that you did not go through the same experiences, as no one should have to. It is difficult enough to experience ALS as a loved one or as a patient (I couldn't think of another word this early..lol), no one should have insurance struggles on top of it. Take care!

• Reply
• Flag for review

Add to the discussion