Hospitals Are For Losers

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.

Christmas Just Wasn’t the Same pt 2

It was quiet in our house Christmas morning. We opened presents and loved on each other more than ever. For New Years we went to my aunt and uncles for a few nights. My mom could barely make it up their stairs to bed at night. We had to help her walk from room to room by letting her hold our arm for support.

Christmas 2018 came and went. And with it, any good feelings we had of mom possibly getting better without intervention.

We saw doctor after doctor. Specialist upon specialist. The neurologists are where we stopped. 3 neurologists in fact.

First were tests. So many tests.

And then possible diagnosis after possible diagnosis. Everyone was sure it was MS. “Definitely MS” the doctors said, but the tests confirmed it was NOT MS. Then it was clearly brain cancer. Then “It has to be cancer hiding somewhere in your body” all of the doctors were sure. But all of the tests confirmed it was NOT cancer of any kind. Then it was an autoimmune disease, then definitely Lyme disease, then definitely an infection in your brain, definitely, definitely, definitely.

I knew what is was. I am not a doctor. Or anyone in the medical field. But I KNEW.

I asked both neurologists “could this possibly be ALS?”. The answer was always no. “No way, ALS is not this rapid. This is not what ALS looks like. This is not ALS”.

Then came the 3 month long hospital stay.

Christmas Just Wasn’t The Same

My mom was diagnosed with ALS. She is dying, and I am her main caregiver, along with my dad and sister.

This story is hers to tell but she can no longer do that. ALS is taking everything she has, including her voice.  So I am giving everything I have to her. I may at times sound selfish but the reality is that she gets everything I have and nothing is left over at the end of the day. This story is hers to tell but I’m going to tell it instead.

In mid November 2018 (less than a year before this post) my mom got sick. She came down with a high fever and weakness all over her body. Cold sweats, freezing but hot to the touch, couldn’t stand on her own, couldn’t keep her balance. She stuck it out and felt better after a day or 2 in bed.

1-2 weeks later my mom got sick again. The same kind of sick but worse than the first time. After a day of this fever, we brought her to the hospital because she could not stand or walk on her own. They diagnosed her with a severe bladder infection and possible lung infection.

After some meds, she felt better but her left leg was still weak and she would lose her balance often. She got tests on her lungs and bladder and all came back well and good after antibiotics.

A month or so goes by and the weakness in her leg and her balance kept getting worse but she pushed through. She was such a champ. We went on with life as usual. Hanging out, playing with our new pupper, Christmas was around the corner! But the Christmas spirit just wasn’t there for our family. We knew something was very wrong.

We couldn’t muster the energy or spirit to decorate, bake our traditional Christmas cookies, or even get my mom to go shopping. These were my mom’s usual things to do at Christmas. She loved this time of year and would set up our Christmas tree with lights and we would all decorate it together, she would put silly decorations everywhere, and get the lights and scenes put up outside. Every year of my life, we have decorated the Christmas tree as a family. That didn’t happen this past Christmas.

I put the tree up myself, strung the lights myself, and helped my daughter to decorate the tree just her and I. I didn’t put up my Christmas village, or extra lights outside. I didn’t wrap the banisters with ribbon or tinsel or bulbs. I didn’t put our wreaths on the doors or Santa pictures on the walls. I didn’t put the star on top of the tree. I didn’t put THE STAR ON TOP OF THE TREE!

Something was wrong but we didn’t know what. By early to mid December my mom’s leg was beginning to drag just a little bit and she was dizzy often. She said it felt like her leg was just not connected to her body, it just wouldn’t listen to what her brain told it to do. She would hold on to things if she needed steadying, but you could tell the dizziness made her tired. The doctors were convinced that she had vertigo. A really bad case of it, but vertigo none the less.

Let me tell you, that vertigo is no where near what was wrong with my mom. But it would take us another 6 months, lots of fighting with doctors, a 3 month hospital stay, and time away from our family, to find out exactly what was happening with our mother.

(to be continued)

 

What A Week

67787Last week was rough! So rough in fact that I ended up taking the week off from the gym. I still ate the way I normally eat, but there were no workouts at all.

It started Monday when I fell and hurt myself. Not wanting to make my injury worse, I skipped Zumba for the first time since I started. I actually really missed it and CANNOT wait to go back tonight. But this started the ball rolling I feel.

The rest of the week was just an emotional mess; from a family pet being put down, to work sucking, to Christmas Concerts, to outragously high blood sugars (damn you diabetes). My nights were filled with tears, reminiscing, happiness, sadness, and cuddles on the couch. I really didnt care about hitting the gym or going for a walk or anything else. It was just a week that needed to be spent with family and not a week spent trying to fit workouts in around everything else that was going on.

Do I feel bad about missing an entire week of workouts? I guess I do a little bit. mainly because I don’t want to reverse the hard work that I have put in. But honestly, it does not bother me all that much. I am happy that I took the time to spend with family and friends. I am happy that I have those memories and that my daughter will look back and remember that mommy was there. Not just physically there, but 100% mentally there as well.

Today, I am looking forward to getting back to Zumba and shaking my ass like we normally do on a Monday night lol Who knows what the rest of this week will bring?

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