Sitting in the computer lab at school waiting impatiently for my mom to come online and let me know what the diagnosis was for her recent unusual symptoms. The neurologist told my parents that it was A L S. Three letters that had absolutely no meaning to me at that point, but somehow managed to change my life forever on January 19th 2006.
CHAPTER I: A L SA couple of months before the diagnosis my mom started exhibiting symptoms that included losing her balance, not being able to walk properly anymore, and muscle weakness. Given that our family doctor was not doing much about this issue, we took her into emergency after the New Year where they admitted her for five days, did a variety of tests, but found nothing to be the cause. Finally, they did an MRI and told us she had an appointment on January 19th with a neurologist.
Sitting in the computer lab watching the clock slowly tick away, my mom finally messaged me and told me they now know what’s wrong. She has A L S. The first thoughts that came to my mind were “thank God, finally they know what’s wrong” and “now they can fix her.” Not knowing what ALS was I decided to Google it right there and then. That probably was the worst thing I could have done. I went on the ALS Society web site and found out that ALS is a terminal disease with most patients living to a maximum of three years. The tears started to well up in my eyes, I was absolutely devastated. I felt numb like my whole world had stopped and I was living this nightmare.
My roommates, friends from back home, and family members were all extremely supportive. At this point it didn’t hit me too hard that my mom was actually dying. I was in denial; I refused to accept it. One night my mom was home alone sleeping and her shirt got caught on her neck and she started suffocating. It was a good thing our neighbour’s had keys to our house and came over to help her. After this experience I decided that I needed to move back home and spend as much time with my mom as I possibly could.
Once I moved home, we started to see a specialist in London who told us that the type of ALS my mom had is called “sporadic” and for some reason it was progressing a lot quicker than expected. This was still all so surreal, every morning I thought I would wake up and everything would be back to normal. After conducting another series of tests the specialists in London gave my mom 6-18 months to live. My dad and I thought it best not to tell her and instead cherish every moment we would have left with her. And this is when the roller coaster I call my life with A L S began…
CHAPTER II: SLEEP~Slowly turning over during the night is now an event that someone else has to provide…~
Turning over during sleep without thought and not having to worry about what’s going to happen when we get into bed is something we all take for granted. For my family this has been a hard fought transition.
It started off with my dad working nights. At first it was okay to leave my mom alone at night because she could still cope with sleeping and turning over on her own even if it took her longer then usual.
Then as ALS slowly started taking over her body she would be able to move from one end of the bed to the other but wasn’t able to turn over. This is when my so called social life came to a halt. I would sleep in my bed and in the middle of the night my mom would yell for me to help turn her over. This happened maybe once or twice a night.
But ALS didn’t stop there. It made my mom weaker and weaker. I went from being able to sleep in my own bed to sleeping on the floor beside her. This way if something was wrong, or if I needed to turn her I was right there and it was just easier to get more sleep.
Slowly my mom progressed to the point where she was unable to move in bed at all. She had lost the ability to do something that we all take for granted.
It is said that a disease only affects the person who has it. In this case that was not true. My social life disappeared because I had to be with my mom at night since my dad was working the night shift so he could take care of her during the day.
I went from being able to sleep eight hours at night in the comfort of my own bed to sleeping maybe four to six hours in my parents’ bed beside my mom. Turning over during sleep is something we can all do on our own, but for my mom I am the subconscious thought that turns her over every two to three hours. She yells for me and I automatically know that’s my signal to turn her over and switch sides.
My dad has been working nights for almost two years. Most normal people sleep through the night. He does not, he works. The only time he gets two to three hours of sleep is during day when he doesn’t have to do household duties, or does not have to attend to my mom. ALS did not only affect my mom’s sleeping patterns, but our whole family’s.
CHAPTER III: SPEECH~Lips that spoke so many words day after day are slowly fading away…~
Talking is another function that we all take for granted. Have you ever wondered what would happen if one day you slowly started losing your ability to speak? For someone who always talked, smiled, and laughed losing speech was extremely hard. We went from not being able to understand certain words that had the letter “Z” when she spoke to now resorting to various other ways of communicating.
Losing the ability to speak disappeared really fast for my mom. Within about six months we went from being able to have a conversation, laugh, talk about anything our hearts desired to not being able to hear her say one word. Her voice was gone, she could still make sounds and cry, but we would never hear her say “I Love You,” or anything else for that matter, ever again.
With my mom losing her ability to speak so quickly, it made us have to resort to other ways of communicating. It’s a good thing that the mind stays intact with ALS because now my mom speaks through her eyes. It took a while, but I have come to master reading my mom’s eyes. She just has to look at me and I know what she wants, or I just hear a noise that she makes and I know that she wants a channel changed on the television, or she needs me to scratch something. For my dad it is not as easy. For the most part, it is because he is sleep deprived and does not have the patience most of the time.
When people come to visit, which is very rarely, they don’t know how to communicate with her. I sit beside her and I am her mouth. They talk to me instead of looking at her and talking to her. It’s like she’s not even around, it’s like she’s already dead. That’s one of the things that really bothers me. She still understands, so you can ask a question and tell her to look at something for a “yes” or a “no”.
She lost her speech, but she has not lost her ability to communicate. She is still a human being, she is still my mom who can tell me she loves me when she looks at the communication signs I put up around the room. If people would just take the time to learn how to communicate they would realize that it’s possible even for someone who is dying and has lost the ability of speech.
CHAPTER IV: EATING~Aromas, eating, tasting, cooking in the kitchen all the things that were once enjoyed are now a distant memory….~
As the days went by it started getting harder and harder for her to swallow. Family friends would bring by home made food and all she could do was smell the aromas coming from the kitchen. My heart broke at the sight. She cannot eat much now and we all had to adjust to that.
At first it was just a change in cutlery, a thicker spoon, fork, or knife with handles so that she could grasp it. I will never forget the night when we were at a family friend’s place and she couldn’t grasp the regular spoon, which was soon followed by her breaking down and crying. My dad brought her home, as she was embarrassed and didn’t want people watching and staring at her. We went there in separate cars and I ended up going to a friend’s house, breaking down crying for an hour because it hurt me so much to see the progression of the disease. It hurt so much to admit to myself that this was not going to get any better.
Following this episode, it only went downhill. We then had to resort to puréeing her food like we would for a baby so that she could still taste it.
Now, my dad and I do not cook anymore. We make things that are quick and do not give off too much of an aroma because we do not want her to feel left out. Eating together as a family as we used to does not happen anymore. Most of the time, my dad and I eat separately because we eat when we find a spare moment away from my mom.
The day finally came when she asked us to arrange for the feeding tube surgery. Something she was so against since we first mentioned it, but something she desperately needed in her fight against this horrible disease. Can you imagine having a tube shoved down your throat and a hole poked in your stomach? I was in the operating room with her for the beginning of the surgery and I was there as soon as it was over. Not able to move, not able to speak, and lying helplessly in the hospital bed with a tube sticking out her stomach was probably the hardest experience by far throughout the whole progression of this disease.
She still eats breakfast most days, by now it’s all-liquid so that she doesn’t choke on anything. One thing she can look forward to every day is the Icy Square chocolate that melts as soon as it is put in her mouth. After that her feeding tube is hooked up to a machine that pumps mashed up organic food, such as carrots, beans, and some other proteins, into her stomach. Eating and tasting food is something we all enjoy so much, but for my family it hasn’t been the same for over two years. We eat because we need the energy, not because we enjoy it…
CHAPTER V: DAILY ROUTINEPeople say that an illness only affects the person, but that’s not true. Everyday my mom depends on us for every little thing. It has not only affected her, but all of us. What would you do if you lost your independence and had to rely on someone scratching your nose, turning you over at night, feeding you breakfast? All the things that we take for granted, ALS has taken away from my mom.
A typical day consists of my dad getting home from work after an eight hour night shift, waking my mom up, taking her out of bed and taking her to the bathroom in the rolling chair. After going to the bathroom and washing her face comes breakfast. She can still eat by mouth on her good days so my dad spends an hour or so feeding her. During all this she watches TV. She has her regular shows every single day. During all this, my dad wakes me up at whatever time I have to get up to either get to school, or go to work.
At 11 a.m. there comes another trip to the bathroom and this is when my dad dresses my mom and gets the feeding tube ready. He has to wipe her each time she goes to the bathroom. I cannot even imagine how hard that must be for her. When she has her period, I get the pad ready, but if I am not around and it needs changing my dad does it.
Around 11:30 a.m. someone from our home healthcare team comes and sits with my mom for about three hours. They watch TV together--all of the shows that I tape the night before. My mom loves this because the person sitting with her fast forwards through the commercials. Then at 1 p.m. her soap operas start and she watches them religiously. While all this is going on, my dad gets to sleep for a little bit and I am at school.
Around 2 p.m. my dad wakes up and massages my mom’s whole body. Then I come home and I sit with her and we watch TV while I do some reading or work on school stuff. During this my dad gets a break and goes downstairs to eat or goes out for a walk to the grocery store just to get a break from all of this.
Our nights consist of some more TV watching. Every week it is the same shows at the same time that we watch, or tape. At 6 p.m. my dad takes her into the bathroom and gives her a shower. We tried doing sponge baths in the chair in our living room, but it really didn’t work so my dad decided to keep showering her until he can no longer physically do it. While they are in the bathroom this is when he puts on her pajamas.
Then it is my turn to be with my mom. This gives my dad a break to sleep, eat, or just watch TV before going to work. My mom and I watch TV, talk, laugh and I massage her at night. The time’s when we have good laughs and get to spend time together is when I feel like everything is going to be all right. It is times like that when I think there’s still hope left. A simple smile, a small laugh makes putting my life on hold for the time being worthwhile.
At 10 p.m. we give her pills and it is time for the last bathroom visit. After this we roll her to the bedroom and put her to bed. My dad leaves for work and I read to her in Hungarian from one of her favourite books every night. Once I am done reading my six pages I turn on the CD player and she falls asleep to her favourite Hungarian songs. I come back outside and do some homework, or just watch TV until she yells for me to turn her over. After I turn her over, I curl up beside her and fall asleep. Every couple of hours she lets me know she needs to turn, so I do it and we switch sides. Then morning comes, my dad is home from work and our day starts all over again…
Some people have said they are amazed at what we are doing. Most people walk in the door and their first question is, “Why haven’t you put her in the hospital yet?” My dad said it best, “Because here she is my wife, there she is just a patient.” This whole experience has made me a stronger person, and has made me realize what amazing people my parents are. My dad is a hero for sticking by my mom through better or worse and my mom for not giving up hope and fighting with all her might to beat this disease. In reality, we all know it is not going to happen, but it has been two years and two months since her diagnosis and even though she is dependent on us for everything, she is still here with us.
I have been told I am an inspiration. That if other people were in my place they are not sure they would be able to do what I do. I go to school, I work, and I am a primary caregiver for my mom. As you can see ALS has not only affected my mom, it affected my whole family…
~In the end it all comes down to what would you do while you still could? ~
Submitted by Katelyn Brown, 15, Nova Scotia
Two Years of ALSIt's year two of my dad's diagnosis. It has been anything but normal. I have tried my hardest to keep myself and my mom healthy physically, mentally and emotionally. It's been hard to do so because it is such a long emotional journey. It's not easy to see someone so strong become so weak.
Right now, my dad is doing fairly well. He has lost most of the movement in his arms and legs. He can barely speak which makes it really hard to communicate. Most times we all get very frustrated, and it usually leads to an argument between my mom and me. My dad still eats by mouth, but has a feeding tube for nutrition. He will also need the feeding tube more later down the road. For mobility, my dad has a power chair that he can control with his head. Everyday, an LPN (licensed practical nurse) comes in the morning, a home support worker in the afternoon for physiotherapy (range of motion), and a home support worker at night. At first all of this care seems great, but it can get very uncomfortable when you don't know who you are inviting in to take care of someone you love so much. My dad is also on a medicine called Rilutek, one that will hopefully help slow the process down. Rilutek has slowed the process down dramatically for my dad—at least in my opinion it has.
At age 15, dealing with this is horrible. Most 15-year-olds where I come from are out partying and all the other things that teenagers do just to fit in. Although I was never one of those kids who wanted to do what everyone else was doing. With my father ill, I grew up fast. In a way, I am really glad about that. But of course I am still your typical teenage girl. Dealing with the stress of ALS, school, boys and friends, it has become super chaotic. Through it all, it showed me who mattered, who never mattered and who always will. I have gained many friendships, made some stronger, and lost a few. In the event of losing a few, I realized they were never my true friends.
I go to a school with amazing support from the staff and many friends. Mrs. Zann-Roland, the middle school guidance counsellor has been a great friend and counsellor. She has helped me through it all, good and bad. I always know I can go to her at my worst and she will be able to make me smile and feel better. My English teacher, Mrs. Schurman, is also there for me. We talk about this on occasion. She means a lot to me, and she is very understanding about this. Her friend's father passed away from ALS. She is one of the best. The other week, I had a rough day so I asked to sit out in gym class. Mr. Spencer (gym teacher) didn't really understand what I meant, but the next day I explained it to him. He was very understanding, and told me when I don't feel like it, just ask. He also told me the exact thing that my friend Nolan told me, that you would never know what I am dealing with at home because I always have a smile on. The administration has also been extremely supportive and caring about this situation.
Through these past two years, I have learned a lot, matured a lot, and became a stronger and better person. I've learned that when you need someone to be there through the hard times, it shows you who your true friends are. The people you think that'll always be there for you may surprise you. I have learned that the people I thought would be there for me, rarely are. Most are caught up in the immature things in life, but I am not. A lot of them have such a narcissistic mind, but the truth is, not everyone is fortunate to get whatever they want, especially when medical bills and medical equipment comes before things like clothing and toys. But, I have met an amazing group of people on “Facebook” (social network site) who are/ were living the same life as I am now. The group is called KALS (Kids of ALS). I became very close to these people. One person, Kinga, is like the sister I never had--we tell each other everything. These are the people who mean a lot to me, we're the greatest support each other has. This group shows us we are not alone. Nobody should ever feel like they are alone in this situation because you aren't.
My personal thoughts are, this sucks! Nobody should have to live this way. Honestly, as much as you hate your worst enemy, you wouldn't even wish it on them. I believe that everything happens for a reason, but this is one thing I am not quite sure of the purpose. By the end of this, we will know what the purpose was, and it'll definitely make us stronger and better people than we were before.
Keep in mind it's okay to feel how ever you do in this situation. If you feel selfish, it's only normal. I went through it as many others have, too. If you feel like you're missing out on your loved one with ALS, don't, do what you believe they would want you to do. They wouldn't want you to be sad, although you will be. Also, it's okay to cry. People say crying is a weakness, but really, it's a strength that shows you're not afraid to show your feelings.
If anyone needs to talk to someone their own age about this, I'll be here for you. If you have e-mail, e-mail me at firstname.lastname@example.org.