A wonderful life

Another amazing person’s life has ended too early because of ALS.

Karen Liebrock died at 2:30 this morning.

This blog is not a platform for my pet causes, and chances are none of you knew Karen, but it is intended to be a forum for my thoughts and, at the moment, they are all with Karen and her family.

As I wrote about in this post my previous research position was with ALS. Two years ago, it was through this work that I met Karen and her family. They had just recently received their diagnosis and were still coming to grips with what it meant.

Over the time that I knew Karen professionally, we became friends. When her involvement in our project was over, we maintained this connection and I would visit her at home and we continued to talk by phone and e-mail.

Karen had devoted adult children who accompanied her to clinic visits and were very hands on with her care. The love that they shared was palpable in the room.

When Karen’s speech began to get slurry, especially when she was tired, she preferred to communicate through e-mails. I just spend a few minutes reading through our conversations. Most days she felt pretty good, but then there were others.

Thanks, Steph.
Oh, how I hate feeling like this!!!!
No strength, no energy, so weak.

After she was in hospital for a while with a stomach bug.

Well, got home from the hospital Sat. p.m.—hope I never have to go again—-but that is probably pushing it, considering my diagnosis.
Very weak, tired, helpless—how I hate it.

When Karen could no longer manage her own care, she moved out of the city to an assisted living facility close to one of her daughters and grandchildren. It was hard for her to leave her apartment and circle of friends but she knew it was for the best.

This place is very nice, and I can get the care here when and if I need it. I hated having to depend on the girls all the time. It sure isn’t the same though, but hopefully, I will get used to it.

One of the hardest things about living with ALS is the constant adjustments that need to be made. You just get used to doing things a new way and then the disease progresses so that new adaptations are needed.

Not too long after being in her new home, Karen required more care and had to move again. This time it was the care facility that had trouble adjusting to her! Karen was dependant on a feeding tube in her stomach for all nutrition at this point. This is from one of her daughters;

I don’t think they have ever had an ALS patient before and the first month was having major issues with the food and trying to get the dietician to meet with her. It was crazy, they prepare the food in Halifax then ship it to the homes. She was getting minced instead of pureed etc. Then would have nothing else or not much to offer if it wasn’t right. She was supposed to be on a high caloric plan and she wasn’t… She is sooo skinny. She’s 80 lbs. with clothes, shoes and leg braces.

So earlier this week, the family let me know that her breathing had taken a significant turn for the worst and that palliative care had begun. This can be a very scary time for the patient if the anxiety and panic of not being able to breathe is not well controlled.

I will always remember Karen’s easy and infectious laugh and the love that seemed to surround her at all times. Even now, as I have tears in my eyes, she is making me smile.

No matter how often it happens, it’s hard when I lose a friend to ALS but it only makes me want to fight harder for a cure. Tomorrow morning I will walk to fund that fight.