how i care for als: a lonely journey through anticipatory grief
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jennifer and don hutton kept their promise to each other to move to nova scotia, and have since fallen in love with hiking throughout the province.
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jennifer and don hutton reached the best time of their lives at the beginning of 2020. they had just fulfilled their dream of moving to nova scotia, a promise they made on their first date 20 years earlier, discovered a love for hiking and set out on new and exciting adventures around the province every chance they got.
“i can’t believe this is our life,” jennifer remembers telling her husband. “i can’t believe we actually did it.”
through this, dating back to as early as 2011, don had been dealing with sensations in his legs. it started with random bouts of what jennifer describes as a charlie horse. from yearly, to weekly, to daily, the issue became more frequent. by 2012, the symptoms evolved into a consistent tingling in his right leg that eventually moved into more of his body.
their first reaction was to look online, which introduced a terrifying possibility – amyotrophic lateral sclerosis, also known as als.
over the next decade, through countless appointments and exams with neurologists, there was no confirmation. there was speculation that don, a retired transit operator, had benign fasciculation syndrome, a condition that causes muscle twitching, but that was later ruled out. the symptoms continued to worsen to a point where it was affecting don’s movement.
desperate for answers, jennifer and don secured a referral for a neurologist in halifax. this meant more appointments, more tests and, eventually, a fateful phone call on september 9, 2021.
“the doctor says it’s definitely als,” jennifer recalls the words out of don’s mouth.
dealing with an als diagnosis
the journey to a diagnosis had already been a tough one. it was during the covid-19 pandemic so jennifer was not allowed to attend don’s appointments. hospitals and other healthcare facilities also had their attention pulled elsewhere, which added a layer of uncertainty.
sponsored by:
als society of canada (als canada)
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don’s sister had been diagnosed with als in 2020, and with no prior understanding of the disease’s genetic component, jennifer had previously put the possibility out of her mind.
“we didn’t realize that there was a genetic component to the als,” jennifer says of her feelings prior to don’s diagnosis. “we actually chalked it up to, ‘ok, now there’s no way it’s als because what are the odds of you and your sister having als?’”
jennifer sat silently on the phone. as an executive in the information technology and cyber security industry, she was on a work trip to montreal at the time. her personality, which she says is a key to success in her professional career, is rooted in problem solving first and dealing with emotions later.
“i’m not going to get upset about it because my job is to fix it. i’ll be upset about it later, but i have to fix it right now and that’s exactly what i did with this. my first thing was i need to figure out a way to fix this,” she says.
“within that hour and a half, i had already called the als clinic in halifax. i had already called the als society of new brunswick and nova scotia. i had already contacted mcgill [university] to find out about clinical trials, i had already sent an email to the mayo clinic asking if they accepted international patients. this is the way that i process trouble.”
“once i knew that we had an action plan, then i reacted. … i went down and sat in the rental car and cried for hours.”
at the same time, a few provinces over, don was left with few answers and fewer options. he was given a pamphlet for maid and a follow-up appointment in six months.
maid, which stands for medical assistance in dying, is a process in canada that allows eligible patients to receive medical assistance in ending their life. this means that the only information don had at the moment he received a terminal diagnosis, was that he could speed up the process. he also wasn’t given a follow up appointment for another six months.
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it wasn’t good enough for jennifer and the rigorous search for solutions continued. she connected with a highly-reputable als doctor in montreal and got don into a clinical trial in less than a month; a trial he remains a part of today. she also fought through numerous rejections to receive access to the als clinic in halifax, a pursuit that went all the way up to the premier’s office.
“we need an ongoing care plan that involves therapy and involves, you know, learning about different clinical trials and learning about the existing therapies that are out there,” she says. “how can we continue to make his quality of life as good as possible for as long as possible?”
anticipatory grief and a new reality with als
the first thing jennifer wanted to do after learning of don’s diagnosis was fly home to halifax and be with him. but with the impact to air travel from the pandemic and new requirements to fly, she would first have to get a negative covid test to be able to return to nova scotia.
the delay was hard, but the thought of a new reality was suddenly too much to bear; the knowledge that nothing would ever be the same and don would never be the same.
“i wanted to see him, but i was so afraid of what i was going to see because in my head when i left him, he was just a normal everyday guy,” she says. “when i come back four days later, five days later, this is now a dying man. this is somebody with a terminal illness.”
it was the same at first. jennifer arrived home for don’s birthday and they enjoyed an evening out to dinner. it was the following weekend when the new reality set in and jennifer says the two shared in a breakdown, crying in each other’s arms for some time.
their relationship has grown stronger since the diagnosis, but jennifer can’t help but think of a life without don. she’s taken over different roles around the house and is learning new skills that don would otherwise handle like how to “check maintenance on the car and how the snow blower works.” but he’s still here and the anticipatory grief comes with physical and mental tolls.
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anticipatory grief is the experience of the emotions associated with grief before an expected loss happens. as a result of the anticipatory grief jennifer experiences, she suffers from chronic migraines and insomnia – all while maintaining a 50-hour work week.
the concept of anticipatory grief is something she only learned about in the last six months and it’s a concern that is still hard to grasp at times. the physical and mental impacts often rear their ugly heads under the same conditions, but it can be hard to see it coming and even harder to manage.
“i think i realized when things start to happen like you start to run out of medication or new symptoms creep up in your life. i think we all get to as you approach different ages, you’re susceptible to different problems,” she says.
“the only way to really get anything done right now is to go to the hospital and that’s eight hours. that’s eight to 12 hours of your time and i don’t have that, you know, and sometimes you have to fight for care and advocate for yourself and i’m out of energy. i save all my fighting for don.”
currently on a waiting list for a specialist to deal with women’s health concerns, jennifer says she doesn’t deal with the impact of anticipatory grief until it’s too late and “things get messy.”
as for a light at the end of the tunnel, she doesn’t necessarily see a pathway to her own wellness while she cares for don.
“i don’t even know how i would go about it.”
not-so-supportive system for als patients and caregivers
the struggle to gain access to als services was the initial spotlight on a fundamental flaw in the healthcare system, but a larger falling out with family and friends revealed how lonely the journey would be.
as the daily challenges continued to mount for jennifer and don, the support they had once seen from their family and friends waned to a point of near non-existence. it reached a breaking point after an als event that jennifer says no one attended. she chose to confront and chastise her circle of family and friends before cutting ties completely.
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while she admits her reaction was somewhat irrational and the result of her own exhaustion, she still believes the response from her loved ones to her anticipatory grief and the uncontrollable impact it had on her life was void of any empathy.
“i’ve had comments from people who say, ‘i’m not getting into this hole with you. i’m not gonna mourn somebody who’s not dead. you need to pull your socks up and just move on because he’s still here, and you should just be thankful for that. i don’t know why you’re upset. he’s still here, he’s still alive,’” she recounts. “and i think i just got so angry at people for not understanding my feelings and not being supportive of the situation because they don’t understand it.”
that misunderstanding of the individual experiences permeates into the als community as well, where jennifer says she is often criticized for her feelings when other patients and their families have worse outcomes.
the progression of als differs for each patient, which means while don has lived with the disease for two years and can still walk and talk, some people lose bodily functions much sooner and others who don’t survive that long. the average life expectancy after diagnosis is two to five years.
“there’s some animosity even within the als community because people tend to be bitter if somebody’s doing better than them, or if somebody’s different than them. it seems like it’s a battle no matter which way you turn,” she says. “so in some sense, i feel better that it’s just the two of us living this journey now because we don’t judge each other and we just go through the journey. but it is lonely sometimes.”
life with als as it happens
jennifer continues to work full time and manage the progression of don’s condition.
she’s returned to a cybersecurity program out of york university – she delayed due to don’s diagnosis and her lack of mental bandwidth to focus on new studies – and is committed to seeing it through.
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“if i don’t complete it now, there’s no more free passes,” she says.
jennifer continues to treasure the time she has with don and hopes that als awareness and research continues to improve.
“the als journey is very difficult right now and we’re still not in a place with healthcare or with supports with als, then you know where we should be,” she says. “they don’t cure it. do they slow it down? you know, maybe they slow it down, they don’t arrest it.
“but there’s still lots of research to be done. there’s still lots of work with advocacy to be done, and we’re just not there yet.”
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