Mom Died: A Reflection on Grief and Love

Mom died last week.

Her death last Monday marked the end of a long and courageous struggle with Parkinson’s. And while certainly not unexpected, the finality of her being gone hits home in a powerful and familiar way for me.

As has been the case in multiple posts to this blog, me writing this is a means of working through this familiar strain of grief. And maybe, just maybe, there is something here that resonates with a few other people going through their own losses.

We’re Losing Our Parents

As a proud member of the real greatest generation (tongue in cheek here – I mean no disrespect to those who were born earlier), those of us in Gen X seem to be going through it these days. Every week, my feed on any social platform – Facebook, Instagram, or even LinkedIn – seems to be sprinkled with another friend sharing the news of the passing of a parent. And I suppose me sharing this news of Mom’s death is right in line with what I’m seeing more and more frequently. The reality is that those of us now in our 50’s are naturally seeing life run its course with our parents. In my case, Mom’s demise last week also feels like ringing a bell on my own mortality, as I’m now the oldest living member of our original family of four.

I’m here to tell you that just because it’s natural, or in Mom’s case even expected, does not mean it’s easy. As I’ve written a few times over the years, the level of pain felt after the loss of a loved one is directly proportional to the level of love that was shared before their death. And Mom loved big. She loved her husband, Tom. She loved me and my brother. She loved our wives. And she REALLY loved our kids.

That’s why this past week has been hard. Expected, and hard.

The Impact of Parkinson’s

I’ve learned a lot about Parkinson’s in the years since Mom was first diagnosed. One of the things I was initially surprised by was that the disease itself is not fatal. It’s what the disease does to you that eventually kills you. In Mom’s case, she responded extremely well to treatment for most of the first six years post diagnosis. The cocktail of drugs she was on was very effective in helping her manage her symptoms, and she and her husband Tom continued traveling the world, walking everywhere, and enjoying life as (mostly) normal.

In the last couple years, however, Mom’s body began to betray her. The various medications began to slowly lose their efficacy. What this meant for her was that suddenly the things she could safely do the week before began to bring unintended and frustrating degrees of risk. Specifically, she began to fall unexpectedly – sometimes from an inability to make her muscles respond as her brain was instructing, and sometimes from a low blood pressure condition that tends to be present in about 30% of Parkinson’s patients.

What started as an occasional stumble morphed into a somewhat regular hard fall as both her low blood pressure and her brain’s inability to control her muscles led to enough ER visits to have earned Mom frequent flier status at the Reston Hospital. Somehow (miraculously) Mom managed to escape serious injury with any of her falls, but she began collecting fresh bruises by the week, while poor Tom was left in a constant state of worry about what the next fall might bring.

All of this led to Mom’s eventual shift from her home into an assisted living facility this past November. While she desperately would have loved to stay in her home, the combination of her falls and an increasing level of need for help with all her various activities of daily living necessitated the move. Tom worked so hard to help her as best he could, but it was unrealistic for him to step into the round-the-clock daily caregiver role that Mom required.

The Start of a Long Goodbye

As we watched this shift, Kim and I (and my brother Greg and his wife Carrie) found ourselves making trips to Virginia with increasing frequency to be able to be more present. On one of those trips, I was able to help set up Mom’s new room at the Sunrise Senior Living facility in Reston before she moved in; we tried as best we could to create a space for her that felt more like a welcoming version of home than a sterile ‘facility.’

And Kim and Carrie facilitated what became a fantastic final Thanksgiving for Mom. While not knowing what the future would bring, we all had a feeling that last year’s turkey day might very well be Mom’s last. So, we did something we hadn’t done in many, many years… we managed to get both Greg’s family and mine, including Mom’s three living granddaughters and one future granddaughter-in-law and her mother to all gather in Reston for a home-cooked family Thanksgiving dinner. I was actually born on Thanksgiving Day many years ago, so it felt like a very special treat to get to once again celebrate the day with Mom, in her own home, all of us surrounding her with love.

I was fortunate to witness one of the most beautiful things I’ve ever seen during that Thanksgiving weekend last fall. Without any prompting or cajoling, Maddie took the opportunity to sit on the floor, next to Mom’s chair. As seen in the header image for this post, holding Mom’s hand, she recounted just how impactful Mom had been in her life, and there was almost a magnetic pull as Mom’s other granddaughters took turns doing the same. It’s safe to say there wasn’t a dry eye in the room following the giving and receiving of real love we got to experience.

As things continued to progress, Mom and Tom made the difficult decision in May to shift her into hospice care. Although it appeared to be a subtle shift in terms of day-to-day living, that move into hospice was a big move from the standpoint of managing a growing list of medical appointments and medications. While there’s no doubt it streamlined and simplified her care, I know it was mentally difficult for Mom to come to terms with the fact she would no longer be able to see the “young” handsome Georgetown neurologist who for so many years had been like a beacon of hope for her.

A Short Note on Care

I hope you’ll indulge me as I go off on a short tangent here. Mom’s Parkinson’s doc – the handsome Georgetown guy – was so very valuable to help soothe Mom’s fears and get her dialed in on the meds that no doubt extended her quality of life. But it was also interesting to watch from afar what happened as Mom’s condition began to deteriorate. This doc, who Mom so looked forward to seeing, always had positive things to say to her, and he always made her feel better mentally after her appointments. But as her meds continued to lose their efficacy and her prognosis worsened, he slowly turned Mom’s care over to a younger associate and no longer would directly return her calls or answer her questions.

Now, I can’t make any insinuations about the specifics of Mom’s care from that office – I was never there. But I can say how her visits made her feel. In the early days, she walked away with hope, with some reassurance, and some confidence to balance the fears. But over time, she felt like the team at Georgetown no longer cared about her. When the handsome doc could no longer put her suffering off, he simply stepped out of the picture, thereby avoiding the hard conversations. And I know this made Mom feel abandoned. She was hurt. Once the shift to hospice was made, she continued to wonder why the handsome doc essentially sent her out to pasture.

My ask for any medical practitioners who work with patients like Mom is this: please have the compassion to say the hard things, and to answer the questions that make everybody squirm. Mom knew she was slowly dying. As the meds stopped working and her body could not hold back the progression, it would have been kind to acknowledge that instead of letting her be frustrated by the silence of the doc whom she had trusted so completely.

Anticipating What Would Come

It’s amazing what happens when you expect someone to die and then it really happens. There has been a lot written and discussed around the topic of anticipatory grief. And it’s fair to say all of us around her experienced our own version of that anticipatory grief. We knew what was coming. We knew it was inevitable. We just didn’t know the timeline.

On the other hand, Mom’s long, slow decline – especially over the past year or so – has in many ways given us a unique gift. A gift of getting to have hard conversations. Of being able to say all the things you wish you could have said. As hard as it feels today, I know I don’t have any regrets about not having said the things I wanted to say to Mom. In fact, I had probably four or five versions of what I fully expected to be our last conversation, our final goodbye. Difficult as it was to watch, Mom’s drawn-out decline really was a gift, especially in comparison to the sudden, shocking nature of our experience when Rivena died.

This brings me to where I am today. As expected as Mom’s death was, I now find myself back in a very familiar place of trying to come to terms with the finality of it. I’ve talked to Mom on the phone every weekend since leaving home in 1988, with very few exceptions. I didn’t get to talk with her this past weekend. And that stung.

And even though I did in fact get to have that ‘final’ conversation, the last version of that talk was more than a week before she died. She ended that particular call by saying “until we meet again,” something she had not ever said to me before, followed by “I love you.” As you might imagine, I broke down in tears after that one with what felt like definitive knowledge that it may have been the last time. But the truth is, after numerous conversations like this, I still thought I’d get to talk with her again. Her spirit to persevere had repeatedly proven that we could always expect another. I did in fact try to call her the day before she died, but consistent with her Parkinson’s symptoms, she had lost the ability to effectively use her phone on her own. So, my last call to Mom went unanswered. And then she was gone.

When Mom Died

I mentioned earlier that Parkinson’s itself is not fatal. What Mom’s hospice nurse had explained to us was that most late-stage Parkinson’s patients eventually lose the ability to swallow and thereby lose the ability to eat and drink. This is what we expected would be the case for Mom, especially as she had gotten down to a few tablespoons of pureed food at most of her meals each day. But as any hospice trained person would tell you, that does not mean Mom had entered an ‘active dying’ state. We thought that once she lost the ability to eat, we would likely have a day or two to get there to be with her at the end.

As it turns out, the other big risk for PD patients is aspiration. Food or liquid that most of us manage to clear easily if something goes down the wrong way can be especially dangerous for someone who lacks the ability to fully control the muscles to cough. And that’s what got Mom. Fortunately for all of us, Greg had decided to fly to Virginia to be with Mom while Tom had to be away for a couple days for work. As things worked out, it was shortly after Greg got to Mom that she died, and he was able to make sure she wasn’t alone when it happened. For that I will always be grateful.

But the suddenness of exactly how she ultimately met her end contrasted dramatically with the long, slow, gradual decline that we had witnessed in the last few years. And it also meant that except for Greg, we did not in fact have time to travel to be with her in the end.

I got the news of Mom’s death from Greg, who just after enduring the trauma of watching her die had to make a few calls that I know from our past experience to be particularly painful. When he called me, I was waiting for Maddie to join me at Mile High Stadium, about an hour before kickoff for a Denver Broncos Monday Night Football home game, and it was surreal to get this kind of news in that kind of environment. Once I relayed Greg’s news to Maddie, we talked about what to do. There was literally nothing at that point we could have done to change the situation, so we agreed to stay at the game; it was as if the two of us were in our own bubble of sadness, shock, and grief, while the 75,000 people around us continued celebrating a big Broncos victory.

The complete disassociation of how that night went has carried over for me, now more than a week later. Much as I try, I find myself still in a mental fog. I know from going through a similar disconnect with Rivena that the fog will eventually clear, and when it does, I know to expect the waves to come. But for now, there is still a numbness around Mom’s death. I know that will change. And it’s a big reason I’ve chosen to write this.

What Now?

Moving forward, we’re now preparing for another family gathering, this time a celebration of life for Mom. I look forward to getting to remember her with everybody who loved her. As I said at the outset, she loved big. Which means there are many of us in her orbit who are now carrying big amounts of grief over her loss.

The daughter of an Army Air Corps pilot, Mom started out as a schoolteacher and became a military wife to my dad, honing a few skills along the way: resilience, independence, the ability to create and maintain incredible friendships – especially across long distances, a sharp wit, a wicked capacity to wield guilt, and a deep well of love. I’m so glad Mom and Tom found each other in what was a second act for them both. Together, they managed to travel the world, and both learned how to tap into that well of love to enjoy so many shared experiences.

As the epitome of what a good mom could be, she was also a loving partner to her husband. And she was without question a grandmother like no other.  Hers was always the first birthday card to arrive in the mail. And her series of fun, cheesy, thoughtful holiday care packages at Halloween, St. Patrick’s Day, the 4^th of July, and others continually reminded us all that we were loved without question. Despite living 1,500 miles away from us, Mom never missed one of our kids’ school plays, community theater events, or graduations. And she was a fierce supporter of my kids and exactly who they are. From the very first day Rivena came out, Mom was in her corner. More recently, Mom was truly heartbroken with the knowledge that she would not be able to be at Maddie’s wedding to Emma next spring. She was such an amazing example of how to love, and of what family really means.

In the end, I’m grateful. Mom, thank you for being the best version of a mom I could have wished for, and thank you especially for being such a steadfast ally to my kids, from the day they were born until the day you died. It gives me some comfort to think of you and Rivena together once again – Grandma reunited with her oldest granddaughter. I’ll continue to cherish you both.

For more information, you can find Mom’s obituary here: Karen Spahn obituary