Daily Archives: April 26, 2011

A Personal ALS Story

Mom & I about a year after I moved home

When I look back on my life, I can say it had all been pretty planned out.  Once you graduate from high school, you go to college.  After college, I ended up getting married and moving a bunch of times.  I had predictable jobs that fit my marketing degree & lived the life that I always thought I would have.  You could say it was pretty smooth sailing.  I always felt that God had a plan for me…and everything always happened for a reason.  I had never experienced the feeling of my world being turned upside down over night.

Once my mom was given her ALS diagnosis, things began to change very quickly.  I became addicted to calling home and seeing how things were going (I was living in Boston at the time).  My mom had officially left her job at Nordstrom (which she loved) and was now cooped up in the house more than she would like.  My dad had taken on an enthusiastic endeavor of learning everything about ALS he could and possible homeopathic therapies that can help.  He had to continue going to work as well, and he never found time to rest.  I felt completely helpless.  I kept hearing about little things that were happening, like random falls or not being able to get up off of the couch after being seated.  Eventually, I was being told that my mom was having a hard time feeding herself.  This was tough to hear.  I wanted to come home.  My dad had told me to wait until things got really bad when I kept asking if I should come home for a visit.  Eventually, I just said I was coming….and he said ok.  He sounded relieved.  I told the company that I worked for that I needed to go home for a month.  They were kind enough to hold my job for me & I headed home.  I remember when I told my sister (who was attending school at the University of Kansas) she got upset.  I assured her that I wasn’t going home because they couldn’t make it without me.  In my heart I didn’t know if that was the truth, but I have always felt a need to protect Jenna.  I didn’t want her to get upset and worry while she was at school.  I told her that I was going home to check out the situation & I felt that I just needed to be with mom & dad.  I think that she was happy I was going home too.  We were all so confused with how to handle our new situation.  Our emotions were all over the place & who knows what stages of coping we were all at.  I think we were all at different places.

The day that I came home, I will always remember the look of relief & excitement on my mom’s face.  She was sitting in the corner of the family room in her lift chair on the phone (of course) with her legs tucked up.  She looked so cute like there was nothing wrong with her.  How could this amazing woman be sick?  She got off the phone & I gave her a huge hug.  I was so excited to be with her too.  How would I ever be able to leave her again?  This woman just meant way too much to me.

Over the next month, my mom and I spent every day together.  We both (with my dad) mentally got used to what ALS was.  We accepted the fact that a walker was necessary.  Little steps such as this were hard to accept.  You hate accepting the fact that you are getting worse.  But compromising safety is far more dangerous, and we had our falls (which we would try to laugh through).  I would feed my mom every meal.  One bite for her, one for me.  It didn’t even bother me.  And she handled it like a trooper.  We had many of her friends over, like we do now & they would bring organic meals & we would chat our afternoons away.  After spending a couple of weeks at home, I knew this would have to be a permanent choice for me.  If this disease was going to do this to my mom, then I had to be with her.  My husband at the time & I were growing apart….so I made the choice to move back home with my family.  (of course there was a lot more behind the scenes than that….but I won’t go into it).  Shortly after I moved back home, my sister decided to transfer to the University of Minnesota when her semester was done.  My parents went from “empty nesters” to having 2 of their 3 children back home.  We wish it could have been under better circumstances, but I know that it made my mom happy.  If you talk to any family that has had a member with ALS, you will hear about sacrifices that had to be made.  There is just no other way. In fact, I could write a whole story about going from being an independent working woman with her own home that moves back home with her family & the struggle to be a respectful daughter yet still be an independent adult.  haha.  That was probably the hardest adjustment.  But in the end, we are a very close family that has travelled a very long a challenging road together to find what our new sense of “normal” is now.


Filed under April 2011, Personal Family ALS Stories