My
Dad and step-mom Sandy used to live about a ½ hour from me. One summer we noticed Sandy was slurring her
words. Sandy insisted she was fine. Dad and I talked about it a few times when
she wasn’t around, we were both worried.
In addition to the slurring, she was stumbling a lot. We thought she might have had a stroke. She finally agreed to go to the doctor and he
ruled out a stroke but didn’t have any idea what was going on. She continued to get worse without any reason
why. Then my Dad died suddenly. Sandy was living alone and I was worried about
her so I tried to go over to visit more and we had her come over one night a
week for dinner. One night when she was
here she tripped, 3 times. She had
become so unsteady on her feet, something was very wrong. Another night she dropped her plate and chipped
a piece out of it. I still have it. Every time I use it I think of Sandy and I
say quietly to myself “Life is too short.”
It is a good reminder. Finally,
with the help of her brother and sisters Sandy started trying to find out what
was happening. I had been doing a bit of
online research myself in an effort to find a diagnosis that might foretell what
was going on. At one point I came across
ALS. I remember briefly reading about it
and thinking Sandy was really exhibiting some of the early signs, but there
were other things she was exhibiting too.
I didn’t give it much thought.
Then she went to an appointment and the doctor mentioned ALS and wanted
to take a chunk of muscle tissue from her arm to be tested. That night I sat down at the computer and
began learning about ALS. After an hour
of reading, I knew what was happening to Sandy.
And I knew she was going to die.
A
week later I took Sandy to the hospital for her surgery to remove the piece of
muscle from her arm. As we were in
pre-op the nurse came in to get vitals.
Sandy told her she didn’t think she needed to do the procedure because
she had a stroke in her mouth, not ALS like the doctor said. The nurse looked at me. I just smiled and shrugged my shoulders. A stroke in her mouth! That Sandy could come up with some great
stories! Later the nurse said that the
doctors felt pretty certain it was ALS, I responded “So do I.” A few weeks later the results were in. It was ALS.
Sandy
decided to move back to Colorado, her home, to be near her son and
brother. It was heartwrenching to have
her leave. I wanted her to stay so I
could take care of her. I found a
retirement living center just blocks from my house and wanted her to move
there. She was determined to go home to
Colorado. One thing about Sandy was once
she got an idea in her head there was no changing her mind. Off she went to Colorado. She moved in with her son and he began the
gigantic task of taking care of her. For
a few months I would call and talk to her on the phone. Then she lost the ability to speak. So I would call and talk and she would just
make grunting sounds back. Finally I
stopped calling, it was just too hard for me.
If you knew Sandy you knew this, the woman could talk, a lot! Sandy was a talker. Constantly asking questions, telling stories,
talking to just talk. Talk, talk,
talk. I guess if there was any solace in
this it was that even though Sandy lost her voice she had talked enough for at least
two lifetimes throughout her life! To
know someone as a talker, then watch them lose their voice, is a painful
thing. You don’t realize how powerful a
voice is until it is gone.
I tried
to visit as much as I could, but with a child with special needs at home and a
husband who worked full time it was hard.
Every time I visited I could see her body deteriorating. At one point Kevin, Jackson and I went down
for a visit. It was during that visit I
realized there wasn’t a lot of time left.
Kevin and I decided that Sandy had to be a priority and I would go to
Colorado once a month to spend time with her and hopefully give Mike a little
break. By this point Sandy used a walker
to get around and she had a feeding tube.
I always thought it was ironic that I had a child with special needs,
but it was my stepmom who had the feeding tube.
I hated that thing. Sandy was
such a pistol about it. She liked to
control the valve, so I would inject the liquid food (which was stinky and
sticky by the way) and she would turn the valve on and off. I never could figure out if she was just
messing with me or did it accidently but she would always turn the valve at the
wrong time and the liquid would go everywhere, except into her! She desperately needed that because the once stout
little woman I knew growing up was as thin as a rail. She was at least half the person I grew up
with. Her weight loss wasn’t the only
thing. Watching her use a walker was
horrifying to me. Sandy wasn’t a
sitter. She was always go, go, go. My Dad used to say “Good god woman just sit
down for 5 minutes!” She was rarely ever
sitting. She was taking the dog for a
walk, delivering Meals on Wheels, working at the Senior Center, working at the
Senior Center Thrift Store, gardening in her yard, making dinner for the Eagles
Lodge, going to Curves for a workout, running errands, volunteering at her
church daycare, playing the piano at church.
Sandy was a woman on the go.
Watching her sitting down all the time and needing a walker to move
around was awful. My last two visits
with her she was in a wheelchair. Every
time I wheeled her around in it I had to hold back tears.
Sandy
didn’t like to go out and about anymore except to the movies. The 6 months before she died I went to see
more movies than I probably had in 20 years combined. On the way home she always wanted to stop at
McDonald’s and get a cheeseburger.
Although she wasn’t supposed to eat or drink because she could choke to
death she just wouldn’t give up trying to eat.
Even though I knew she shouldn’t be eating I would still stop and get
the cheeseburger. I can’t imagine never
being able to eat again. I knew it was
hard for her to accept so I just went along with her. She was dying and I wasn’t going to say no.
The
last couple of visits with Sandy I knew her life was ending soon. She had become increasingly weaker and spent
most of my visits just sleeping in bed.
Her breathing was more labored and the light was gone from her
eyes. The second to the last time I saw
Sandy I sat down with her and said my goodbyes to her. We both cried. She knew it was coming and so did I. On my last visit to see Sandy I brought
Jackson with me. She was amazed at his
progress and kept clapping every time he sat up by himself. She sat there just watching him and
smiling. She died two weeks later.
I’ve
left a lot out of the story because if I wrote it all it would be 10 pages
long. There were a lot of things that
ALS did to Sandy. It robbed her of so
much and then took her life. Watching ALS
kill Sandy those last 6 months is something I will never forget. It was incredibly painful to watch. I have no doubt watching someone you love die
from any disease is painful. The sad
truth is that I never really had heard anything about ALS. I didn’t even know it as ALS, I knew it as
Lou Gehrig’s. When I tell people about
Sandy and how she died, typically if I say ALS I get a blank stare. If I say Lou Gehrig’s Disease they have at
least heard of that, but most don’t know anything about it. That’s what this ice bucket thing is about,
bringing awareness. While it is
estimated that approximately 30,000 people have this disease at any given time in
our country, it is a low number compared to the 50,000 a year diagnosed with
Parkinson’s or the 15 million with cancer.
That is why this campaign has been so amazing. How many of you had heard about Lou Gehrig’s? How many of you knew it was known as ALS
also? How many of you knew what ALS
was? Have any of these answers changed
since the campaign?
Estimated
funding for research for ALS is $40 million, Parkinson’s $139 million, cancer
is in the trillions. While I get that
the more people with a disease the more funding comes with that, I just have to
say, when you know someone who has died from ALS, you want the same funding as
others, you want the same recognition of that disease, you want people to know
about it and to be motivated to do something about it. You want their story told.
So
while some may be critical of the campaign and the recognition, I am loving
it. ALS is out there, reaching millions,
earning millions for research and support.
I have watched countless ice bucket videos these past couple of weeks
and every one of them make me smile. It
makes me think of Sandy, I wish she was alive to see them. Sandy, I have no doubt, would want everyone
to know about ALS and what it does to those who have it. I know I do.
I realize that to some the challenge may just be a fun thing to do. Fine.
Let that be it. But to many it
has brought ALS into the forefront and has earned the recognition of many. So keep those videos coming, they bring me a
little joy every day. But most
importantly take a minute to learn about ALS and the people that have it.
