All those lessons

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WRITING HERE A year ago I cited T.S. Eliot's famous line, "April is the cruelest month" while complaining about the constant rain. This year is no different. Each morning I check my weather app hoping to see sunny skies in the future, and each morning I see rain predicted ten days hence. I think I should stop doing this.

My new life continues to evolve and the days have taken on a kind of habitualness that has the benefit of filling the hours, if nothing else. My concentration has improved enough that I can now sit for a half hour with a book without reading the same sentence endlessly, or battling the omnipresent urge to do something else. Even the news doesn't hold much interest, and for a news junky that is weird. But the president and I have this in common; we are both living through a depressing year. The difference is, he doesn't know it.

So what have I learned so far from this year of bereavement? I have learned that by flitting from one task to another a lot can be accomplished. The satisfaction of actually finishing something, however, is lost. I have learned that yogurt can be eaten for breakfast, lunch, and dinner; that errands can be put off indefinitely; and that the body can produce an endless amount of tears. Thanks to my grief counselor I have learned that talking to yourself out loud is neither unusual nor a sign of imminent dementia. This was a relief.

I have learned that I can still laugh out loud, still enjoy friends and outings, still look forward to events, while holding a sadness in my heart. I am impressed with the flexibility of my heart, how it makes room for boundless love and seemingly endless grief. If the rest of our bodies were as flexible as our hearts we would all be made of rubber.

Despite the evil and suffering that fills the world, I still believe we have within us the power to  change. In ways big and small that is happening every day. And maybe my grief is its own wake up call. Today, life without Ray feels empty and meaningless. But I know in my flexible heart that more awaits, and that the years ahead will confirm what I've always known, that all life is a gift.

Here's to the caregivers!

March is Women's History Month and today is International Women's Day. I've spent the morning vacuuming and dusting and cleaning up the kitchen, because Laura is coming for tea.

I had thought of honoring women in my family this month, for women's history is essentially the history of our families. There are many I could draw on, from the those who supported the underground railroad, to the sisters who fought for women's rights along side Cady Stanton and Susan B. Anthony.

Closer to home I could write about my paternal grandmother, who raised eight children on an Oklahoma homestead and wrote poetry, and kept a pet pig that she washed every laundry day in the big cast-iron cauldron that now sits in Jennifer's living room, full of throws.

I met Alice Hedglin Coffin only a few times and most of my memories are of tales others told. Like the time she found a large rattlesnake asleep on the floor of the parlor. Alice grabbed the shotgun that was always nearby and threw it over the snake. Then she planted a foot on each end of the gun and called for help. A son soon appeared and cut the snake's head off. Then he asked, "Why didn't you just shoot it?" because Alice was as good as any man with a gun.

"Because I didn't want holes in the floor!" she replied. Which always made sense to me.

In the end though, I decided not to write about family; that can wait for another time. Today I want to honor the women who too often go unsung and underpaid. I had the good fortune to know several over the last months of Ray's life. Sometimes they came when called, like Siri, who lived down the hill and filled in when others couldn't make it. Sometimes they came for an hour or two a week, like the nurses; or twice weekly, like the bath aides. And sometimes they were there every day. One of these, Laura, was with me the longest, eight hours a day toward the end.

Laura had worked with dementia patients for nine years, and with those in hospice for the last six. She was knowledgeable, competent, kind, and loving. She cooked scrambled eggs for Ray, with the hot peppers he loved. When he could no longer hold a spoon she fed him, and when he could no longer eat she gave him hourly doses of morphine to ease the pain of inevitable bed sores. We bonded over dirty diapers and strong cups of green tea. I heard about her extended family and the traditions of her Mexican roots, and she heard stories of our travels and my highly opinionated views on politics. I could not have gotten through the last months without her.

Most women become caregivers at some time in their life, but few make careers of it and those few—there may be millions in the US alone—deserve our respect, decent pay, and even honor. I keep thinking about the President, who wouldn't give Laura, a Chicana, the time of day. He might even want her deported, despite being born in the U.S.

But Laura and those like her who spend their lives caring for others are worth far more than a thousand Trumps. So today, on International Women's Day, I'm happy to honor them. And I'm also happy because Laura is coming for tea.

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

11:29

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.

Changes

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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.