Life with ALS…as seen through the eyes of my mom, dad, and my brother (written in 2013)…
A letter from my mother:
So many people are unaware of what ALS is and how destructive this disease can be. I was one of those “ignorant” people until I was diagnosed with it in 2010. This invasive and deadly disease has sent my life, and my family’s, in a whirl spin. Its catastrophic journey has taken control of my body muscles thus robbing me of my mobility and left me totally dependent on my spouse for my care. Simple tasks like holding a spoon, brushing my teeth and getting dressed are now impossible to do. This disease didn’t stopped there. It attacked my facial muscles, my respiratory muscles and swallowing muscles. Now my speech is impaired and my lungs can no longer perform on their own without the help of a bi-pap machine. I receive my daily nourishment through a feeding tube connected to my stomach.
In 2010, Angella, my spouse that I met 44 years ago, was diagnosed with ALS. She was given approximately three years to live. I did not believe it for a moment. They had made a mistake I thought. It could not happen to her, it only happens to others. We had plans to travel and like so many today, we also had a bucket list. But now the bucket’s bottom was gone and so were our plans. For days and weeks we both were confused, lost and always in a mixture of emotions. Gradually family and friends got the awful news and visited to let us know that they wanted to help in any way possible. Angella and I couldn’t think of anything more than for them to visit when they could. But, the most painful moment was telling the bad news to both of our children. It felt as if someone had reached in and yanked my heart out. I felt sick deep inside with sadness for the both of them. It was obvious to me that life as we had known it, was gone forever. ALS is a disease that is turning our normal life upside down with a certain and unwanted ending. It is a daily struggle not only for Angella but also for our children and myself. I find it very hard and unnatural to witness someone very close to me slip away a little every day. To live with someone for over 44 years that has hardly any quality of life left is almost too much to bear.Looking back since her diagnosis, there has been a continuous decline in her health as well as her quality of life. It is a hard and new life that has very little good moments. At this point (March 2013), she no longer has the luxury of the mobility in her legs, hands, and neck (needs support to hold her head up), or to sit comfortably in a chair (always sitting in a wheel chair). Her speech is almost incomprehensible. Her meals by mouth also require the use of a feeding tube to supplement her intake that is needed to maintain her calories and weight. The feeding tube will be required when she no longer can be fed normally by mouth. But for now, she still wants to taste her food for as long a she is able. She needs my help with just about everything from getting out of bed to returning to bed for the night, feeding her, cleaning her, showering her, dressing her, brushing her teeth, transporting her from wheel chair to the toilet seat, to the bed, etc. And some of these moments are very demoralising for her, as you can imagine if you needed someone to help you clean yourself after using the toilet. But she swallows her pride and allows me to help her with her needs. We have gone through much these past 44 years, but this is just unreal. Often, I will notice her looking at her hands or her legs with much of mix emotions. I can sense the emotional storm brewing inside her. The same can be said when she is looking through the living room window and not being able to go out there and do all the things she loved in the winter time such as skating, cross country skiing, hiking, photography etc, and visiting beautiful places in our province. With all that she longs for and cannot have or do, she just turns away from the window and returns to the present moment of the life that she has.Her passion has been writing for numerous years. Sometimes, jokingly, I will call her John Boy Walton and that makes her smile. To live like this for the both us, at times it seems to be too much. But then again, on certain days, we seem to accept our situation and get on with the tasks handed to us, even if it’s difficult at times to find much that can make our day a slightly a pleasant one. Nothing with ALS is easy. She requires a variety of equipment such as a By-pap machine, a Cough Assist machine, Respiratory machine, LVR bag to help keeping her lungs retain full volume expansion, and a few ventilating puffers (to help her breathing). All of these items she needs to use each and every day, making for a full and long exhausting day. Around the clock, I need to help her in all of her needs that includes several times in the night; she needs to be turn over because it causes her hip pain when lying on one side for too long. She cannot sleep on her back because her lungs will partially collapse causing her to panic for air. Also a few times a night she needs the bathroom to relieve herself. These sleeping interruptions are very hard on her body as her energy needs to be conserved and replenished for the upcoming day. On most days, she needs to get at least two to three house sleep during the afternoons to catch up from the lack of sleep during the previous night. Angella has the following professions that visit her during the week; a nurse, a occupational therapist, sometimes a pharmacist, a dietitian, a social worker, a respiratory therapist and a speech language pathologist, all of which are from the New Brunswick Extra-Mural Program. As much as she needs these people, their visits also add to her exhaustion. And somewhere among all of this, she will need to visit the family doctor and her ALS specialist in Fredericton New Brunswick (approx.3 hour drive away). With all of this help that she regularly gets, I have to say a heartfelt Thank you to the ALS Association for their enormous support with all of the equipment that they continue to provide to meet her everyday needs. It needs to be noted that not all of the money collected for ALS goes for research. Some of the money raised is used to pay for much needed equipment that patient cannot purchase without the help of someone or service provider such as the ALS Association.
Somewhere between the moments that she does not need me, I attend to keep the house up (groceries, prepare meals, clean and dust the house, laundry and ironing, do beds, shovel snow etc ). At times it appears to be overwhelming, but it is nothing compare to what Angella has to go through every day. I am aware that it will get worst for her in the coming days, months, and years and I will be there with her all the way even knowing that it will hurt and tear me apart. No one should have the misfortune of this awful disease, especially someone so closed and dear to me and our children.
Much more could be said about her life with ALS, but I would rather remember the good times and the fun that we have shared since our first date.
Not to say that we don’t laugh even at these challenging times and we do enjoy each other’s company. The highlights of these past few years have been the weddings of our children. Denis married in 2011 in Edmudston New Brunswick and Rachel married in 2012 in the Sunshine Coast of British Columbia. We had the best time of our life. We are so so proud of them both.
They say that there is always something to learn in times like these. I am convinced that you must live each and every day as if it was the last one and live each day to its fullest. Don’t waste your present moment planning for tomorrow or linger on the past. The moment of the day is all that you have. Get out of the box and live while you are still capable and always try to find happiness in your everyday of your precious life.
A letter from my brother, Denis:
As I read my brother’s letter I was moved by how clearly and truthfully he spoke of ALS and its lasting effects on him (us). One thing that struck me most actually wasn’t in the letter but rather in his email to me. He said: “This took so long to write because I was working through my own grief in the process. I had to own the negative in order to finish on a positive note. Each time I tried to write, I’d either write a “puff” piece to avoid dealing with how I really felt or went off the deep end.”
Although small, this paragraph spoke volume to me. That’s because I believe it embodies so much of what we feel on a daily basis. Hesitation of addressing and dealing with our emotions for fear of going off the deep end so to speak.
It’s unfortunate and incredibly sad that my brother is also hurting and struggling with all of this. But truth be told, I take great comfort in knowing that I’m not alone and that him and I have each other’s back. I couldn’t ask for a better big brother.
Maybe I’m numb, in denial or simply too overwhelmed to express any kind of coherent thought or emotion. At times it seems pointless to find meaning in a senseless loss. As I watch my mother’s body wither away, I wonder what is more merciful – to pray for more time or to pray that the end passes swiftly and mercifully. The weight of that harsh reality is barely hidden under our brave faces – a reality we do our best to ignore if only to seize these precious moments together. Yes, our feelings are justified and normal. But normalcy doesn’t really matter or seem to apply right now. At least, it doesn’t matter as much as keeping this disease from robbing more of our time together. Living in the moment (however cliché it may sound) has never seemed more important whereas everything else seems so trivial. Imminent death and the fragility of life have a way of stripping away our illusions and putting what’s really important into focus. My mother’s struggle with ALS has made me realize that the “little-every-day-moments” we often take for granted are really what matters most in life. If there is any silver lining to be found in this sad story (for me anyways) it’s that I’ve discovered that I owe my mother far more than gratitude for my life. You see, she could give up. She could hate life. She could push loved ones away. She could stop smiling. She could stop laughing. She could stop trying. She could stop caring. She could stop believing. She could find excuses. She could blame. She could give in to her anger. She could dwell in regret. She could lash out at the world. She could be ungrateful. She could be resentful. She could miss-out on this moment. She could let her losses overshadow her gifts. She could throw in the towel and in each of these instances, we’d all understand why. Who could blame her. Yet, she chooses the path less traveled and shows how being incredible isn’t always about accomplishment. It’s sometimes about who we choose to “be” independently of our circumstances. While there are times where her morale likely waivers, she and my father continue to weather this storm with more honestly, humility and dignity that I could ever imagine possible. They have become the giants I once believed them to be as a kid. If our purpose in life is in fact to discover and become our best “selves”, we would do well to take a page out of Angella and Lorenzo’s book. When everything is said and done, my mother may lose her physical battle with ALS but her spirit and beauty will remain forever intact. That is non-negociable and a testament to who she is. I take solace from this realization and these precious moments I have with her. Perhaps just importantly, I take pride in knowing that even when her time comes, she will leave a legacy for us to follow. Mom, know that you have loved well, you have served well and have lived well. We will be there with you until that moment where the streets of heaven become slightly more crowded. Until that moment comes and thereafter, I will try to live in your example and appreciate the joy you bring into our lives. Thanks Mom.