Life goes on

WE'VE HAD SNOW here for three days—not much, about four inches. But it froze overnight and that kept me at home. Today it's starting to melt so I ventured out and picked up my husband's death certificate.

There's a finality about seeing those words tied to Ray's name on that official state-sanctioned form. It's a relief in a way, an undisputed acknowledgement that there's nothing I can do now. No medicines, no words, no supplications can bring him back. He's gone and I'm still here and life goes on. I've a document that proves it.

And I'm glad to be alive this week to applaud the energy and determination and strength of the students from Marjory Stoneman Douglas High School. It's a marvel to me that these students, suffering profound shock and grief, have summoned the willingness and drive to confront this long-standing issue. My husband died peacefully at home. These children saw their best friends torn apart by the bullets of an AR-15. That they had the courage to stand up and say "no more" just hours after the event, well, I haven't the words for it.

We are living through a kind of crucible in this country. So much has happened that we never thought to see. But I rejoice in the power of so many resisting the onslaught of corruption and ignorance. People are standing up, fighting back, speaking out. And the year is young. We mustn't waste a minute of it.


Mourning Ray


It is exactly a week since Ray died. I had just stepped from the shower when Laura knocked on the door, saying “you’d better come.” I threw on my robe and ran to his bedside but he was already gone.

I have been crying off and on all morning while going about my chores; breakfast, shower, picking up, doing dishes, feeding the cat. It has been much the same all week. But what do I feel? I can’t decipher it. Sadness, yes; loss, certainly; longing of course; wondering. Where is he? What is he doing now? Does he even know I’m still here? Has he lost all interest in Earth and its drama?

And what am I to do now? That’s the real question, and the only one I can answer, though not now; not yet. Now I can only keep going, keep putting one foot in front of the other, though moving that foot has little meaning.

In an effort to return to normal I went to Costco yesterday, my regular monthly trip, and half way down the first aisle I realized I was buying for one. It was like being hit on the head with a pillow; a numbing reminder. What was I doing there? Can one shop for one at Costco? Yes, one can, but not often. 

Ray’s death was long in coming. I saw hints of approaching dementia as early as 2012, though I blew them off as simply aging, or anxiety, or lack of sleep. I had many excuses, and in fact such hints were far apart and not terribly obvious. It was on a trip in 2014, after a series of mini disasters that Ray couldn’t seem to handle, that I was sure. Later that year he was diagnosed with Alzheimer’s. Unfortunately that diagnosis was later changed to Lewy bodies, a combination of dementia and Parkinson’s—a double hit on the brain, as a nurse would tell me, and therefore a faster progression.

So I sit here at the computer, writing because it's the only thing I can think to do. Writing words that mean nothing without the context of the man himself, a kind, compassionate, smart, funny man with whom I was privileged to share a life of laughter and curiosity and adventure. He wasn’t perfect and I didn’t expect him to be, but he loved life and hated injustice, and he wasn’t afraid to speak his truth whenever he saw the need. I learned a great deal from him, but I will never be as good, as kind, or as funny. 

And now one week without Ray is behind me, and the next one looms as empty and sterile as a waiting petrie dish. I will put one foot in front of the other because I can. And because I have no other choice.


Happy Thanksgiving!

It is peaceful here on this day before Thanksgiving. My morning helper has gone home. The cat is curled on the bed and hasn't moved for at least two hours. Ray is dozing in his chair. There's a fire in the fireplace and I'm settled on the couch. To perfect this picture my favorite jazz pianist, Don Shirley, is entertaining us via Pandora. I am grateful for all this and more, including the idea that as a country we have chosen to dedicate at least one day a year to thankfulness.

We often forget to be grateful for the difficulties of life, but from my aging perspective I know that hard times brought the greatest gifts. It was problems, despair, and fear that taught me, that forced me to be honest with myself, that pushed me forward in new directions. I'm thankful for the lessons, the shoves, and the happiness that always followed.

It's that thought that keeps me moving ahead now. It allows me to not be consumed with Ray's illness, and it gives me hope for the country, despite the apparent deliberate deconstruction of the State being delivered by Trump and his minions. Our president lives in an alternate reality, a self-created maelstrom of narcissism, hate, greed, and stupidity, and unfortunately we've all been sucked (or suckered) in there with him.

But experience suggests that in a few generations people will look back on this period as something to be happy about. They'll be grateful to Trump for waking us up; thankful that we started paying attention, and voted, and ran for office, and resisted the worst impulses of the worst president. They'll wonder how we managed to sink so low before we awoke, and they'll vow to never let it happen again. 

And I am thankful that now, in 2017, Americans still have the time, the courage, and the dedication to make my vision true. 

Happy Thanksgiving to all from Ray, the cat, the couch, the fireplace, Don Shirley, and me.



The pin pictured above is one of my favorites. I once admired it on a friend, and when I left my last job she gave it to me. Shannon died a few months ago, but the pin is on my jacket and I think of her every time I see it.

Change is something we all live with. Some welcome it and others dread it, but no matter how we feel about it, it's a powerful motivator. I've always tried to welcome change even when negative, because it carries with it such valuable lessons. For me the word has usually meant new vistas, new friends, new beginnings. Change.

There are other kinds of change of course. There's entropy (brought to us by the second law of thermodynamics) which tells us all things decline, disintegrate, fall apart. Organization decays into chaos, plates break, walls crumble, and where concrete erodes, weeds sprout and flowers bloom. Entropy is everywhere and humans are prime examples. No matter how we fight it, we age, decline, and die. Since I'm writing this on my birthday that idea has a special poignancy. Change.

I have witnessed a great deal of change in the last eight weeks, which is one reason I haven't been here writing. My husband is now on hospice. This alone feels shocking, and the change has brought a bevy of new people into our lives, caregivers of every kind and miscellaneous others. The phone rings far more than it ever has, and my "alone time" has shrunk markedly. Change.

I try not to think ahead to the great change that is coming, but at times I find myself slipping into daydreams, mostly about how nice it will be when the hospital bed, lift, table, and two wheelchairs are removed from our small premises. I regret these thoughts but humans are essentially selfish; I refuse to feel guilty.

In the broader world we are faced with astonishing, even shocking changes that were unimaginable until they weren't. I can do little about that either, except heap praise on those fighting to uphold the norms and laws that we all took for granted before T***p. The pace of change is no longer a stately and steady altering, but a clock warping slide toward dystopia. We can only hang on and try to remember that change is good. It is opportunity, it is possibility, it is life and it is death. We might as well welcome it. Change.

A perfect life

There is smoke in the air again today, so instead of the patio I am comfortably ensconced on the living room couch. Since we've hardly used this room all summer it feels odd and is a distinct reminder that winter, and use of the fireplace, aren't far off. The week ahead promises to be rainy, which adds to the sense of summer's end.

While I write Ray is in the "back room" watching a rerun of a bike race in Spain. Both of us are enjoying this day without plans because the week has been unusually busy. Tuesday it was the bath aide and a sitter, so I could run errands for three hours. Wednesday it was two women to talk about the caregiver study I agreed to participate in (my contribution to science). Thursday brought a speech therapist to check on Ray's swallowing (one of the symptoms of Lewy body). Among other things she suggested thickened water. Ick. Friday was the bath aide again, plus a PT to help with transfers. She watched as I helped Ray move from chair to couch, and said my technique was excellent. I felt like a kid getting an unexpected A.

All this attention to illness is not unexpected but it lays bare how much our life is consumed by it. As Ray grows less able to care for himself I take up the slack, but while I grow more intimately aware of his most basic needs, I understand less and less of his thinking. The two issues are on divergent paths and the distances between them grow daily. Communication suffers, of course, but I have learned to shorten my sentences, to cease sharing complicated topics, to hear silence in answer to questions. Instead of talking to Ray I talk out loud to myself, and sometimes wonder if I too am not losing all sense.

Next week the every-other-week nurse will return, as will the bath aide and the PT—this time to work on car transfers. All bring a whiff of the outside world with them along with their help and conversation. I will be here, chopping wood and carrying water, and living in the now with Ray and the cat. It is not an exciting life, but it is not to be disparaged. It is the perfect life for me, at this moment, now.

Summer's gone

It's Labor Day, the official end of summer. Since this ending always makes me gloomy I've moved to what passes for nature here, our plant bedecked patio, where the air has an orange cast to it. Either the gods have changed their color palette or there's smoke in the air. Since I can't smell it, I'll stay. It's about 80 degrees; a lovely day if you like orange.

I've been on Twitter this morning. The news is of DACA and Korea and floods and fires, and I wonder what it all means—or if it's just coincidence, all this destruction and drama coming at us at once. Like you, I am tired of it, I have enough on my plate and I'd like the universe, or our corner of it, to make this shared now a little quieter please; more placid, please. Less yammering and yelling. Please! Bring us some capable leaders, some ordinary weather. As some senators are fond of saying, "we need a return to regular order."

The orange light and terrible news has not affected our cat. She is currently spread across the love seat, one of several stops in her determined effort to spread her shedding hair onto every comfortable chair. I protest, of course, but she is as oblivious to my words as she is to threats of war.

Ray too, is essentially oblivious. We watch the news together but he forgets it as soon as the subject changes, and his lack of worry and general calmness mirrors the cat's. What they have in common is  their complete attention to now—when they're not sleeping—and confidence that their needs will be met. All will be as it is. Right now.

I am the only one in the household who looks at the calendar and sees events rushing toward us at a dizzying speed. It's a strange responsibility. I understand that now is the only place change happens. Now is where life is lived. But time is a construct built of clocks and calendars and at least one of us has to pay attention. Ray can't and Zoe won't. Summer's gone but there's a lot more now ahead. I guess it's up to me.


Maybe it gets better

My email feed is a litany of need. There are so many causes anxiously urging support; so many people pleading for help; so many demands on my wallet and time. And no matter how often I unsubscribe they keep finding me. I feel like tossing the computer out the window, but instead I send a little money here and a little more there, never satisfied that I'm doing enough.

I long for the days when I opened email and saw messages from friends. Now I just get asks.

This email problem isn't mine alone, and it contributes to ongoing anxiety over the state of our nation, the state Trump's mind, the state of Kim Jong-un's mind, increasing racial tension, climate change, and now the shocking Texas flood.

Stress is the word of the day, and even if we aren't directly involved with the events in Houston, we can't help but feel the pain and loss, albeit to a lesser degree. Watching a video a few days ago of an elderly man being pulled from his flooded home caused me to burst into tears. The power and unexpectedness of that reaction had, I think, less to do with me or the old man, and more to do with the current zeitgeist.

But we can't simply wail about our problems. That old man was being rescued by a fellow citizen, and he's not alone. Hundreds, if not thousands of people have turned to neighbors, friends, and strangers for help and it has gladly been given. Maybe we're not as bad as we think.

This constant churn of email—frustrating as it is—is the result of many people working to make things better. They are protecting our Constitution. They are working to heal the earth and the animals, plants, and wild places that benefit each of us. They are struggling against racism and poverty, or raising money for the victims of Charlottesville. They are in courts saving our water and protecting us from dangerous chemicals. They are stepping up to run for office. I can't recall a time when so many were so active in causes of every kind. Surely this is a good thing.

I believe our thoughts have power. If we can trade our frustration and anxiety for belief and action, maybe we can change the world—at least our own piece of it. Maybe I'll quit seeing all those emails as a problem and instead spend time every morning cheering on the senders as they go about their work. Maybe what it takes for anything to change is simply seeing the problem differently. Maybe we can change the zeitgeist. Maybe it's worth a try.