My mom was in the hospital for 3 months.
April, 2018- July, 2018
By April my mom was using a walker full time. She could not go up or down the stairs, so she was stuck on the upper floor of our home. She could not get in or out of her own bed by herself. We had to physically lift her into and out of bed. She used a bed rail to help her turn her own body in the night to reposition herself. She had to wear adult diapers because she could no longer make it to the washroom in time to pee (or more because she was losing bladder control). We couldn’t bathe her as our shower is down 2 flights of stairs and we couldn’t get her in or out of the bathtub either.
By April my mom told us that she wasn’t going to make it to the end of the year. She told us she was dying and she could feel it. In hindsight now, she was right. But at that time we told her once we got it all figured out she would be able to get better. We just had to wait for the doctors.
Since the neurologists (nee: 2 neurologists) could not figure out what in the HELL was wrong with my mom, she asked them to admit her to the hospital until they could figure it out. We could no longer, safely, care for her at home and they hoped that testing and treatments could be provided at a faster rate.
So they admitted her in April. We spent a month and a half mostly sitting on our hands. Some tests were done. Some treatments began while we waited for results to things that she didn’t end up having.
I pushed again for a referral to the neurologist who specializes in ALS, 2.5 hours away from us. The neurologists still said that there was no way she could have ALS. They fought me tooth and nail to give me that referral but in the end I won. We were sent to London at the end of May.
I will never forget that day in all my life.
After fighting with doctors for 6 months we got the answers we didn’t want, but did need. Our mom had ALS. A very rapidly progressing form.
When my mom asked how long the Dr thought she had to live, she said she didn’t know but it would definitely be on the lower end of the “average”.
On average a person with ALS dies between 3-5 years after diagnosis. My mom made it to 7 months.
The only thing my mom said before she started sobbing was “I won’t even get to see Brook graduate”. Those words broke me.
My daughter was 11 and my mom was her other parent. My mom worked sooo hard to help my daughter succeed. She came to every school meeting, every school function, every after school activity. She was the only person in the room when my daughter was born. She helped me care for her every day. She was there for it all. It broke me that, she was more worried about Brook, about us, her family, than anything else.
And it’s not fucking fair.