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)

 

Its Been a Minute

Hello WordPress world!!

Wow it’s been a minute.

Recently, a good friend of mine told me that I need to start writing again. My life has been flipped upside down and I just don’t know which way is up anymore. So with her great advice of “it will help you” here I am, beginning over.

This post, or even the rest of my blog, may not be about ‘fitness’ or getting healthy or anything in particular. I am just going to write what I need to write, for myself. If it inspires people, cool. If it doesn’t and everyone hates it, that’s cool too.

Newest update on my life?

My daughter is 11. She has been diagnosed with Sensory Processing Disorder.

We got a pupper that I am training to be her service doggo.

My mom is dying, quickly. She was diagnosed with ALS a few months ago. They do not think she will stay with us very much longer.

I am taking a leave of absence from my job to take care of her.

I am not working out. Or eating right. And I don’t care at this moment in my life.

I’m bitter and resentful and completely lost in life.

I am still me.

ADHD Life-A bad day

This is an older post that I wrote on a bad day. At the time I had decided not to post it because…*what would people think?!* But if you have read my blog, then you know that I try to be honest…sometimes to a fault.

I am going to post this today because well, I cannot be the only mother who has ever felt this way at one time or another.  This is not a constant feeling, it was just a feeling in the moment. This does not make me a bad mom, it makes me a REAL mom. A real PERSON.

A Bad Day

As I sit at the dinner table all by myself, tears falling into my untouched plate of food, I wonder if anyone else has ever had a moment where they hate their child?

It sounds so awful. I cried just thinking it. But I have had moments, like right now, where I have hated my daughter.

Maybe it is not hate towards her, maybe it is hate towards the life that we live or the way that we have to behave or the uncontrollable screaming and name calling that is coming from the other room.

It only lasts a few minutes. I should be able to handle it. But when your child is calling you an awful mother, screaming it at you with such venom, saying they don’t want to live because you are so awful, over and over, it is hard to keep your composure.

When we have a good day, it is SO GOOD. When we have a bad day, it is SO BAD. Sometimes it only affects the time that the ‘BAD’ takes place but a lot of time it puts tension on the entire day and it is so hard to shake it off.

Patience mommies…patience. It will get better.

-3rd Generation Mommy

Life With My Daughter-Changing Plans and ADHD

You have heard me talk about my daughter’s ADHD and the yet to be diagnosed, “learning disorder” that affects her ability to cope with changes, deal with her emotions and regulate the way she handles responses to external stimuli.  Going to new places, trying new things, doing regular family stuff that involves being out in public or just around people in general (even our own family) and any kind of quick change of plans or change in routine…we do all of those things differently than most. We introduce things slowly. Brook has to be mentally prepared for pretty much anything that we do. We plan things well in advance in order to give her the best shot of being able to enjoy herself.

For instance at the beginning of each school year we go in the week before school starts so that she can be prepared and will know where her new desk is, where her new locker is, what the new teacher’s routine is. When having a family party we have to start talking about it weeks in advance, explaining that there will be lots of people in our home, it will be crowded, noisey, she has to use her manners and if she gets over whelmed to tell us and take a break in her bedroom with the door shut. The extra planning doesn’t always help. When we had her First Communion last year she was excited to have all of these people over and have a party, until the last second before we left for the church, when she started crying and yelling and asking us to cancel the party…she wasn’t going to First Communion at all! But for the most part planning helps.

I’ll give you two examples of what happens when we dont plan, or when we do plan but the plans change.

Example 1) Going to her friend’s birthday party at a family fun center. We talked to the mom and she told us exactly what we would be doing in the order that we would be doing them in (I love parents that are totally open to helping make experiences for Brook so much more enjoyable), I explained to my daughter what each activity was and how she would play it. We get there, everything is fun, she is having a great time but then the one activity that we were supposed to do (laser tag) was not working so we had to do bumper cars instead. She had a melt down. She was prepared for laser tag and not bumper cars. She could not wrap her head around the change until I explained to her exactly what she would do, from walking to the bumper car, getting in, and driving it around. I had to have her watch the other kids so that she could see how the cars were used. She eventually went on and had a great time (YAY) but the before was the struggle.

Example 2) Right after we learned that my daughter has this disability (whatever it is) but before we had learned anything about it, we planned a trip to Disney World. Every kid’s dream right? We made it a surprise for her…you can only imagine how that turned out! She was miserable for the first 2 days as she acclimatized herself to the new surroundings. She cried, whined, wants to go home, did not want to leave the hotel room…for 3 days! It was awful. I thought I had made the biggest mistake of my life. She eventually came around, got used to the crowds and the different setting and had a great time, but those first 3 days were brutal.

This is just a glimpse into our life. Everyone’s experiences are different. Everyone has their own opinions. These are mine.

3rd Generation Mommy