What We Didn’t Know

We always knew this would end badly; there were no good solutions and never the promise of a cure.

What we didn’t know was how it would come about or when the end might be.

Death is tricky, and even in days of waning health and absolute signs of what was to come, strength can arrive from seemingly nowhere and final days sometimes become final months.

We knew it would be hard, knew it would be painful, knew it would release feelings that had been buried for years, and recognized that we didn’t know what else might erupt.

What we didn’t know was just how much it really would hurt.

We knew it was for the best. There were too many years filled with too much suffering, too many tears – his and, of course, ours – the pain of his illness and our collective loss, of seeing a life taken away from all that he loved. We wanted to ease his pain, perhaps to ease our own.

We just didn’t know how hard it would be to say goodbye to someone who left us so long ago.

What we really didn’t know, didn’t even suspect, was that with his death, John would suddenly become himself again – the person we knew so well, missed so much and hadn’t seen in so many years.

When someone is sick, like he was, for such a long time, life becomes reactive, a series of phone calls, medical and managed care facilities, emails, solving problems, taking care of needs, dealing with issues and never feeling like you can ever possibly do enough. Mostly because you can’t. So you do what you can and take care of what’s in front of you and all the best parts of a life you once lived become background noise, seldom listened to, examined even less, because it hurts too much and there is too much in the present to attend to.

What we didn’t know is that in the end, there was nothing else to focus on, except the life we once lived – together – and the memories, and the pictures; so many pictures, bringing back sensations and smiles and the recognition of a life once lived with joy, with a lot of love, lots of laughter and the chaos of many kids and too little time. Yet we didn’t know then how little time we really had, but even if we did, I don’t think we could have cherished it any more than we once did.

We knew once John was gone, we could finally begin to grieve, but we didn’t know what form that grief might take. So tonight, out of nowhere, I wept in earnest, the first time with no restraint, for the husband that’s gone, the life we led, the family we had together and the father and grandfather that would have loved it all so. I miss him so much and have for so long.

What we didn’t know, although we thought we did, was that somewhere inside of us, we clung to the hope that someday he’d be back, be part of our family again, even if we had to have known it would never be. Illness can delude you, give you a glimpse now and then of the person still there. It’s brief and it’s painful because it offers hope where none should really be.

We knew we had lots of love surrounding us – from family, friends that feel like family and even people we barely know well. We could feel it, even before this, and it magnified as the days blended into one.

And as that last day began to come and we finally knew that this was really it, not an illusion or one more close call, what we didn’t know was that almost 20 years would somehow melt away and the worst of it all didn’t matter anymore. Here we were all these years later, remembering decades ago as if they were yesterday.

In death, John became ours again. In life, we’ll miss him every day.

On the Precipice

DSC_0011This has been a difficult week.

In most ways, it’s been no different than any other. Each of us in the family went to work, took care of personal responsibilities and even had a bit of social time together. We made plans for a family dinner over the weekend, and perhaps even an afternoon at a N.H. fair.

But in between, there have been tears – and a few adult beverages. There have been hugs that felt tighter, laughter that seemed a bit too necessary and memories shared and sometimes quickly swept away. It hurts less if we don’t think too much.

Yet, we can’t stop thinking about what’s going on. Can’t stop thinking about what’s been – and most of all, we think about how much longer this all will be and how it will end.

Here’s the thing – when someone in your family is gravely ill, the kind of sickness that’s gotten significantly worse over the last decade, when you witness what life has done to him and wish there was a way to make it all stop, even when that person is in hospice care, there is no guarantee that person you love will soon have any peace.

In early June my children’s father entered into hospice care, a bit surprisingly, at least to us, even though we had been watching his agonizing decline for such a long time. This past winter brought a fairly severe injury and surgery, and he’s been increasingly less active since. What we see now is barely a glimmer of who and what he once had been – and with each day, there’s a bit of improvement, a bit of decline, a bit more decline, then perhaps a better day, although at this point, what really can be considered better?

We’ve been in a holding pattern for so many years. No one but our immediate family can even imagine it all – and we share it with each other in ways that run deep and run strong.

The greatest tragedy of our collective lives has not been just losing this person, but losing him incrementally over the course of so many, many years. He’s been gone for us for so long, yet his physical presence, while just barely, is still here.

Earlier this week, we met again with hospice care providers, who offered kind words, spoke of discontinuing medications, procured funeral home information and yet, none of us have a window into the length of this journey. This man is stubborn, but he may finally be ready to let go in the months ahead.

As a family, we may soon face that final loss, the acknowledgment perhaps of what we’ve felt for so long. We’ve never truly had a chance to grieve as we experienced one thing after another over the past 20 years, focusing instead on holding things together, finding solutions and pushing emotions as much as we could to the side. That’s not to say emotions haven’t run strong; that we haven’t had our own mini-breakdowns and crises of the heart. To feel anything at all sometimes is to begin to feel it all – and to get through it has almost pushed us to the point of desensitization.

That seems melodramatic, but it’s been 20 years of appointments, of medical tests, of more and more medication, psych evaluations, cognitive testing, of medicine mismanagement and misusage, of supportive devices and therapies, hospitalizations and adult daycare, of increasingly difficult behaviors, of safety issues, of car accidents, of impairment, of anxiety and physical harm, of managed care facilities, of brain surgery, of a family pushed to the very limits of love and acceptance and a man who was loved dearly who never accepted his illness or realized that no matter what happened to him he was someone of great value to this world with so much still to contribute. The list could go on and on, and the heartache could match it along the way.

There have been countless discussions around long tables, with caregivers and caretakers, with medical and mental health professionals, with good people often doing the best they can, with little to offer that could ever change a thing – and we’ve told his story, told our stories, offered medical history, becoming a bit more jaded and disheartened each time.

This past week has been a difficult one – one more table, one more discussion, some tears, another emotional visit and time together as a family. We’re on the precipice now, holding our breaths not sure when the ledge will break. We know all too well how painful the plummet will be.