Our Best Wasn’t Enough
“Sometimes when I walk my leg stays locked straight. It’s weird, I’m not sure what’s going on.” It was 1994 and these words came from my mom, Sarah, an Irish-Catholic mother of 6. I certainly didn’t know what was happening but I wasn’t too worried. I knew that knees break down sometimes. I was 28 years old, struggling to grow up, and pretty carefree, unsuspecting of what can go very wrong in an otherwise good home.
Pictures of families dealing with ALS usually include a loved one in a wheelchair, often dependent on breathing assistance, supportive family surrounding them, smiles all around. When I see these photos, I imagine the love that must exist, but at the same time, I’m convinced that it was impossible to get to that point without some serious pain and disruption. I also believe that many members of those families had been or will be asked to do something they’ve never before considered possible. The person living with ALS is facing something I won’t pretend to understand. Kids with parents with ALS will often have to grow up too fast. Partners will have to get up and make it all work for another day when all they want to do is curl up and cry. Adult children will have to navigate challenge after challenge. Some families rise to the occasion. Some, in spite of their very best efforts, come up short.
I want to tell that story.
Mom had raised her six boys and was now a grandmother. She was 62 years old but still too young to suspect this issue with her leg was a symptom of some sort of catastrophic disease, one that would, within a year and a half, take her life and leave behind damage that would last for years.
The progression of Mom’s disease was tragic, but typical, a few false diagnoses before finally, all of us were introduced in more detail to something we had only generally heard of. Even if you didn’t know this disease, you knew of Lou Gehrig the person, and that he died too soon. We learned some details of the disease from the doctor, but we really didn’t know what it had in store for us.
Growing up, we were seven males, a dad, and six boys, in a four-bedroom suburban house in California with one mitigating force, our wonderful and loving mother. Dad, age twelve, was already a working man, hopping the subway to all five boroughs of New York City. He joined the Navy at seventeen and never looked back. He liked to tell you that he had four kids and owned a home by 26. His tough edge was particularly pronounced in the soft world of suburban California. Dad was there to make you tough. Any nurturing was left to Mom.
Our world was rough, loud, physical, and highly competitive. Three of my five brothers, at one point or another, dislocated each of their shoulders. I dislocated my kneecap. This is just a few of many examples. Dad excelled in these emergencies. He was calm and was always a terrific advocate. If you were laid up, you knew that someone had your back and if there were any laziness happening with the hospital staff, you knew that he would burn the place to the ground, just for you. A great advocate, however, doesn’t necessarily possess the softness needed to be a good caregiver.
A culture of sports dominated in our home. I have often said that growing up we could do whatever our heart desired, as long as that thing was baseball. Cooperation was something as foreign as cricket or escargot.
Like many mothers, ours played the role of peacemaker with her words and caretaking. Our parents’ marriage was solid but very traditional. Dad was always the steady provider, but at home, he was taken care of by our mom, just like all of us boys. Dad’s way of doing things was not unusual for a man who became a husband and father in the late 1950s. The home was Mom’s domain. We loved her and desired to please. That kept us from each other’s throats, mostly.
By the time of her diagnosis, most of us were living on our own and some of us had our own families. We didn’t know we were about to embark on this huge group project, whether we liked it or not. Once mom was weakened by ALS, the balance was thrown off and the adjustment to a new reality was stark and painful. Some of the restraints on our interactions were removed and conflict ensued.
Some of us jumped in to help with caretaking, and some retreated. I understand now that this is typical. Those that stayed often battled over what was best for Mom. Dad wanted all decisions to go through him, but unfortunately, he was soon overwhelmed by the speed of the changes in Mom’s condition, and reactions to those changes routinely came too late.
A stark example came during the debate over the use of a wheelchair when Mom fell on the front porch and broke her arm. Nighttime nursing help was also slow to arrive, even as Dad grew more and more tired and resentful of the interruptions to his sleep.
One particular time, I failed too. I was in a new relationship and living with my now wife of 28 years and in a moment of fear and exhaustion, I refused when mom asked me to stay with them to help her through the night. Dad was sleeping through her muted requests for help while she was experiencing nighttime cramping in legs she could no longer move.
I know now that I was wrong to refuse her. I was shortsighted and weak. In truth, I didn’t want to deal with Dad and his smoking. 28 years later I still regret my decision. I prolonged her suffering. It’s like I’m right back there, sitting with her as she pleaded with me on her notepad. I can’t get that moment back. Ever.
Instead, I pushed hard for the night-time nurse, who soon arrived over Dad’s objections. In fairness, money was on his mind and I get that now. My folks were on a fixed income by that point, after a life of not having a lot of extra money. Some of us chipped in financially but it was an inconsistent and always a struggle to organize and collect. ALS, of course, doesn’t care about your finances. It’s coming hard for you regardless of your ability to handle it.
If neither of them were sleeping well, soon Dad’s daytime care was also not up to where it should be. Our mom, like anyone would, wanted to move about the house, sometimes out to the yard and back in. Each move required work on the part of the caretaker, that very often fell to our dad. As he grew more and more tired, he became less responsive to her needs. She, of course, could not speak.
On occasion, some of us would come over to help only to find her trapped in the backyard, overexposed to the sun, and wanting to go inside. Dad was inside, clueless. I’m being hard on Dad but I don’t think this a story of neglect as much as it’s a confirmation that everyone, without rest and overwhelmed with a task, has their limits. My dad went past his limits but sadly, was unwilling to give up control. We were stuck and tensions were rising.
Before mom got sick, our tradition was for her adult children and grandchildren to come over to her house for pizza on Tuesday nights. Dad would be out golfing. It was a highlight of her week. We loved it too. When she got sick, she didn’t want to give that up but, because of her condition, she could no longer access any money.
Mom had always handled the household finances and that was just one more thing she could no longer do. We asked Dad to make sure that she always had some cash, at least enough for pizza. He could never understand why she would need access to cash. He couldn’t conceive that it wasn’t about the money, but it was about control. For the first time in their 35-year marriage, he was dealing with day-to-day finances and he wasn’t a little freaked out. Yes, we were adults and could pay for pizza and we did, but that wasn’t the point. Mom wanted to keep hold of any control over her life that she could. One loss of many.
All of the brothers were working day jobs at this time, but some of us took shifts, getting mom ready for the day and ready for bed at night. We did the best we could to help, but there are some things only husbands should do for their wives. That didn’t mean my brothers and I didn’t have to occasionally transport our mom on and off the toilet when dad was starting to physically break down from the strain. I would like to say that no son should ever have to see their mom in such a condition, but people are asked to do things all the time that, “no one should ever be asked to do.” I can only imagine what this experience was for Mom.
An adviser let us know that an advanced directive would be appropriate at a certain point. Our dad could not bring himself to talk to our mom about what the future held. He was not perfect but, now having been married for a long time, I have empathy for his hesitation. Sometimes too much is asked of us. It wasn’t something I wanted to do either, but the task fell to me. The directive eventually came in handy in a trip to the emergency room to address a choking incident.
In the end, our family survived, even though Mom did not. We had no choice but to move on and we did. But, the damage was done. We loved our mother fiercely and we did what we thought was right but we were not equipped and, ultimately, I believe we failed her. We would be better if we had to deal with it today but it was something we had all hoped to never experience again.
Well, it happened again…
It was a decade or so since mom had passed and I got a call from my cousin Donna. Something was wrong with her mom, my aunt Patsy, and it was progressing in an eerily similar manner to how mom’s symptoms did. Mom had two sisters and two brothers. This was her sister and it was happening again. I don’t think any of us thought that was even a thing-- two people in the same family?
After Mom passed, for a long time, none of us became advocates or even followed potential ALS treatments or cures. It was too painful to revisit. The truth is, we hardly even mentioned even her to each other after she died. We carried her in our hearts but scarcely did she escape our lips. I suppose we were all trying to move on, far from the pain of what had happened.
Personally, I was able to remember those days in order to advise my cousins on what to look out for and what to prepare for, but these we much kinder, gentler people; Uncle Neil, their two adult sons, and an adult daughter who is a nurse. They were all used to cooperating and I believe did much better than us.
The implications of another family member with ALS were understood among the greater family but the subject of a potential genetic link was, at least from my perspective, hardly ever broached. We all just clenched at the thought of another victim and tried not to think about it.
Aunt Patsy, a kind and positive presence in many lives, soon succumbed to the disease. Like my mother, she accepted her fate and didn’t put up much of a fight; a decision we all respected and still do today. She was in her seventies, hardly old, but maybe that was a factor in her decisions. Truthfully, I don’t know what was in her heart and I’m not sure her children did either.
As we were all getting to the point where we thought, probably irrationally, that two sisters with ALS were just a fluke, we got word that their brother, our Uncle Charlie, had also been diagnosed. I never knew my Uncle Charlie well. My mom’s folks left Ireland and raised their family in New York. We were the family that ended up in California and Uncle Charlie’s family settled in Tennesee. I never really heard about their experience of dealing with ALS, save for one haunting fact.
Soon after his diagnosis, my Uncle Charlie, a man in his sixties, looked at his road ahead, presumably thought of his sister’s experience, and came to a conclusion. He wanted all of his suffering and the suffering of his family to end as soon as possible. He soon decided that he had eaten his last meal. I don’t know all the details but I know that he starved himself to death. This is not unheard of in the ALS community and it is a hard subject for many, with many opinions.
Many years later and from the perspective of someone somewhat removed by distance and time, I am still, however, struck by how easily we all accepted what had transpired with Charlie. In other words, it made sense to us. My attitude then was, well, that’s hard but understandable. A man saw that starving himself to the point of death was his best and only option, and I just shrugged.
I hope I’ve made my point, but sadly, the story doesn’t end there. After Charlie passed there were two siblings left. Uncle Jimmy and my Aunt Mary. Jimmy died at the ripe old age of 88 but, after he passed, ostensibly of old age, we heard that his doctors believed Jimmy had ALS when he passed.
Our lives went on but the story goes on and again hits closer to home. Two of my five brothers have passed in the past 3 years. Duke passed in 2020 of covid at 58 years old, but he had fallen on a few occasions prior to getting covid and his muscles were showing some signs of wasting. We will never know for sure if he was suffering from ALS but you can see how we are suspicious.
Lastly, we lost our brother Rich at age 62 just this last year. Rich had a variety of symptoms but ultimately died as his ability to breathe slipped away. Again, we are suspicious.
You may be wondering if a gene has been discovered that explains this pattern. As of yet, that has not happened. Some of those diagnosed early on were tested but no gene was found. Since that time, I believe medical science is more aware of problematic genes but we still haven’t found a link in our family. Granted, the ones most recently diagnosed were not tested. In one case, you can blame the pandemic, and in the other case, sadly, the incompetence of the one with the power to order that test.
I’m sure this story was hard to read. It was hard to write. If you concluded that dysfunction in our family led to some of the more damaging moments, you would be only partially correct. We had and have our problems, but I would say we were more of a typical American family. We excelled in some areas and fell far short in others. Our patriarch was a highly-skilled athlete. Some of his children were also exceptional athletes and some of their children were exceptional, and so on. Those skills, combined with a fierce competitiveness led to some glorious moments. It also, however, left us unequipped and unprepared to act as a team against a foe as unrelenting as ALS.
There were smiles along the way, and there still are, but not without some serious pain. Being human means limitations. Our task is to push against those limitations without deluding ourselves that they will ever completely disappear.
God bless you Mom, Aunt Patsy, Uncle Charlie, Uncle Jimmy, Duke, and Rich. If we failed you, please forgive us. It wasn’t because we didn’t love you.