Nancy, Author at The Artful Caregiver

Valentine’s Day 5 Years Later

Renewing our Vows Five years ago today we were preparing for renewing our wedding vows with friends in the evening while making the rounds of doctors to recreate care after hospice kicked us out. Six weeks later, Larry took his last breath A heartbeat ago and an eternity.

There’s something about five years that carries significance in a way that four or six doesn’t, with no reasonable explanation. It’s just what I feel and if there is one thing I’ve learned these last five years it’s that feelings matter and you can’t just push them away.

In some ways I’ve come full circle this last year. Mostly since Larry died I’ve been grieving him, intensely at first, then learning to live with it as an ache that comes and goes, sort of like an old injury that hurts when it rains.

This year I’ve found enough stability and equanimity to be able to finally allow myself to fully feel the crushing blows of caregiving. I spent months “oozing” the trauma. It wasn’t like there were flashback memories, it was all physical. I called them dread attacks and they came during the nights and early mornings, sometimes one at a time, sometimes like endless waves crashing over me. I fought them, looking for how to “fix” them with things like journaling, meditation, drugs, and therapy, It was only in accepting and allowing them that they started to abate.

Next came grief for me, for the years of regular life I’d lost, for the career I gave up at its high point, for the hopes I lost.

This Valentine’s Day I’m back to grieving for Larry. I feel like I’m losing him, losing memories. A friend suggested maybe I’m not losing him, I’m letting him go. When we celebrated five years ago, we included a sand ceremony, taking it from ancient traditions where parties would each mix sand to seal a contract – once the sand was mixed it could never be separated. Larry (with my help) and I each poured sand from our favorite local beach in a turquoise decanter, added sand our kids had mailed from their home beaches, and invited our neighbors who’d been so supportive to us to each add a small cup of sand. I’ve moved that sand in that decanter from Florida to California, and from houseboat to houseboat to houseboat.

Original pastel of one set of footsteps in the sand

I’ve been thinking about loss and letting go all week. I decided it was time to let go of that sand, let go of holding onto the pain, the grief and yes, even some of the love. There’s plenty of love still to keep but I don’t want to keep the rest of the pain and grief that got so tied up in it.

Yesterday I separated out a small amount of sand to take with me to Florida next week when I make my first visit back to the area where we used to live, where we celebrated that last Valentine’s Day. I’ll leave it there on the beach it came from, perhaps at sunset because Larry loved the beach at sunset.

Today I took the decanter out on my deck and slowly scattered the sand into the water below, to the sounds of James Taylor (his favorite) in the background playing “You’ve Got a Friend.” The past life scattered at the base of my present life. I’ve washed the decanter and will give it away. The sand, the decanter, they’ve served their purpose. I don’t need them anymore. I remember saying at his funeral that Larry taught me how to let go of people I loved. I meant the kids, but I think it applies now.

I like the person I’ve become over these last five years. I’m strong, I’m happy. I’ve made lots of friends of all ages. I like the people around me and I know they like me. I’m enjoying life.

There’s lots of kinds of love and today I feel well-loved, by those alive and those who’ve left me. By Larry, by my parents and my stepdad, by my kids, by my grandkids, siblings, dear friends. I’m so fortunate! I know how to live open-heartedly and I know how to give love and receive love. I’m not afraid of what will come because I know whatever it is, I’ll figure out how to manage. Not just manage – I’ll figure out how to thrive. You can do that when you know about love.

Dread Attacks After Four Years

It’s been over four years since my husband died. I just got in from a kayak paddle with a friend. I live alone across the Golden Gate Bridge from San Francisco in Sausalito on a houseboat. It’s late October and though the air has a tinge of fall, the sun is still very warm.

I’ve been struggling with some PTSD type of symptoms recently. Not grief, though I still miss him. Instead, this is about the trauma of caregiving. Those years when you had so much to manage but so little control over what was going to happen, living with constant fear, the hospital visits, the EMT calls, the transformation of your relationship, the fights with the healthcare system, the slow deterioration of someone you love.

I don’t have flashbacks, like returning veterans talk about. There are no images, no specific thoughts. It’s completely in my body. I wake up during the night and many mornings with pure dread coursing through my body. I’m not dreading anything in particular, it’s a physical sensation. Usually, after maybe 5 minutes, they dissipate. Occasionally, they come in waves.

I was so strong for so long, I feel a subtle shame at feeling “weak” now. But what does that mean? It’s a voice that plays in my head – the old “you shouldn’t be feeling that now.” Or “you should be over it by now.” And yet, it is what it is.

I’ve started thinking that these dread attacks are my body working to get rid of the stress that was encased in the armor required to survive through the pandemic and my cross country move these last few years. Maybe I’ve carried it with me because I wasn’t yet in a safe space to process, to let it run through and out of me?

At least that’s what I am wondering. Kind of like shivering, or sweating, or even vomiting. It’s my body’s mechanism to get rid of the accumulation of feelings leftover from caregiving. There is a lot written today about how the body holds trauma, like The Body Keeps the Score by Bessel van der Kolk, MD.

At first I was thinking I needed to “fix” these attacks.

Now I’m thinking maybe my body has found its own way with these dread attacks.

Other than that my life is pretty good. Generally, I’m content. I have friends, family nearby, work I enjoy. I get plenty of exercise and have abundant opportunities to enjoy nature. I do yoga, and meditate. I am lonely at times and at other times I enjoy living alone. I have traveled by myself, most recently to Yosemite for a couple days. I look forward to other travel, not alone.

I think I’m OK. I don’t need to be “fixed.”

So for now, I’m just going to accept that this is a process I need to allow to run its course. If it gets worse, or if it doesn’t go away, I’ll seek help. Somehow that feels like the right combination – trust and track.

My First Home Alone

After 7 months of waiting, I have finally moved into my first home alone. While the landlord finished the renovations, I was 2 months in one temporary place, 5 months in another temporary space. Throughout that time all my worldly possessions were in storage. Now I’ve reclaimed them – what’s left of my past life, of the houses I owned with my husband.

It’s been a strange melange of emotions. I’m excited to have access to my stuff – my art supplies, my books, my clothes. I’m happy to have familiar things around me. But unpacking has brought back a lot of memories of an old life that is no more.

I unpack the big food processor I bought my husband because he loved to cook but no longer had the knife skills for all the chopping. It’s heavy and too big for this little place, and for the size of entertaining I might someday do here. I unwrap the turkey pan that prepared many many holiday family dinners. Will I ever use it again? Somehow, in the old house, they didn’t seem out of place in my life so I packed them up for the move. But do they belong here??? That was the life of wife, the active mother. Now I’m the widow. The grandmother.

This is the first home I’ve ever created entirely on my own. College, grad school etc, I had roommates. Then I got married. Kids, divorce, another marriage. All homes with others. Never alone. Yes,I lived alone for 2 years after my husband died in our big house, but we had moved into it together. Decorated it together. For a life together.

I suppose there’s the freedom to put things where I want them, choose things I want. But there are also big identity questions. Who am I now? What is this new life I’m leading going to look like? And for how long? Mortality creeps in.

I got my new CA drivers license and registered my car. I wanted to cry. Why? I had no great love of Florida, only there 5 years, 5 of the toughest years of my life. Why did I care? I guess it’s because it made this move feel so permanent. That life is GONE.

Then there’s the whole holiday thing. Last year I was entirely alone, celebrating Christmas dinner on Zoom. This year I’ll be with family. Better. Much better. I brought the old Christmas decorations for my kids to choose from. I love having my grandson run in to open the wooden doors of the Advent calendar my kids used to open.

There are many tree ornaments, though, that no one will want. Ornaments Larry and I bought on our many travels. We’d always have two trees – one for the family ornaments and one for our travel ornaments. As we unwrapped them together, we’d have fun remembering each trip as we sipped eggnog.

I don’t want to take them out alone. And the kids weren’t there. They don’t have those memories. Should I even bother to keep them? That’s one of the many things I miss. Shared history. Shared memories.

Am I hanging on to the past, keeping these elements of a past life? I put a picture of my husband on a shelf. It’s been a long time – 32 months since he died. Am I clinging to the past? Am I holding on to grief as a way to hold on to the love? Am I afraid to move on? Am I resisting building a life alone?

What Does Starting a New Life Mean?

Muir Beach – one of my familiar places to walk

Here I am, six weeks into moving to California from Florida, two years after my husband’s death. I’m struggling to find my balance, a sense of fit. I have to build a new life from scratch, but what exactly does that mean?

When we moved to Florida from New England 5 years ago, it was for Larry’s comfort. We were a couple. We moved into a community of couples, with activities for couples. Quickly we started building a new circle of friends, and then a new circle of support from doctors and support groups we discovered. Though I was still working, the bulk of my energy and attention went to ensuring Larry’s well-being, as far as was possible.

Now I’m alone. Yes, I have my daughter and her family nearby. And I love our visits. But I can’t live her life.

So I’ve been thinking about what I need to do. What I need to find. What I need to create to have a good life here.

What are the components of a good life?

I Googled it. Family. Friends. A sense of purpose and meaning. A sense of belonging – of fitting in. Of community . Of familiarity. Fun.

Ok. I have family nearby and I have been heartily enjoying that.

I’ve been making a few acquaintances on the dock – people living in the nearby houseboats. But it takes time to turn an acquaintance into a friend. It takes time to feel like you belong somewhere.

I am working and I love my coaching and my clients so I have a purpose and meaning , but it’s all virtual. And even though things are starting to open up, COVID is still a factor. There aren’t a lot of ways to meet people.

It’s an odd feeling. A pretty lonely feeling. I’m usually pretty content to be alone.

In some ways I felt less alone rattling around in my big house in Florida, even without family nearby. Maybe it’s because everything was familiar. The arrangement of furniture in the rooms. The views out the windows. The placement of stuff in the kitchen cabinets. The roads I walked the dog on. The roads I drove for groceries, or for a walk on the beach. I knew how to get places without using Google Maps.

Here everything is different, unfamiliar. Getting anywhere requires a lot of concentration, nevermind navigating always with GPS since I don’t know my way around. I’m trying to find a balance between exploring new places and going back to a grocery store or walking path I’ve already found.

I guess the bottom line is that this is a work in progress. You don’t build a life in a few weeks. Familiarity and comfort take time – like breaking in new boots. I have a wonderful opportunity to practice patience, never one of my strengths. I figured out how to live in the present while Larry was dying. I have to relearn that skill.

Starting a new life includes the fog of not-knowing

The fog rolled in yesterday in big swaths of dense white air off the mountains, changing the view that has just begun to feel familiar in these weeks of starting a new life.

In the sunshine last week, I traveled out of my comfort zone of the Waldo Point docks, drove over to the Pacific and took a walk up into the headlands. There was no GPS coverage behind the hills so I had to rely on the old way to get there – the road signs. I had no trail map when I left the parking lot so I just wandered along the cliff paths. My not knowing where to go allowed me to just take in the ocean views, the smells of the sea and the wildflowers, and the gonging of the bell buoy. My unknowing footsteps led me to discovering a labyrinth on a cliff top promontory.

Given the fog this week, I went a different direction for my foray into the unknown. I found a sporting goods store and bought hiking sneakers – Florida was really not a place for hiking. Then I went further north to find sunshine and a wonderful art supply store.

Allowing myself to experience the unknown is challenging, but has its rewards.

In a book I’ve been reading by Frank Osaseski (who coincidently lives on a houseboat two docks away from me) I discovered the concept of “don’t know mind,” which seems like what we need when experiencing change.

“As we go about our day-to-day lives, we rely on our knowledge. We have confidence in our ability to think through problems, to figure things out. We are educated; we have training in specific subjects that permits us to do our jobs well. We accumulate information through experience, learning as we go. All this is helpful and necessary in moving through our lives smoothly.

Ignorance is usually thought of as the absence of information, being unaware. Sadly, it is more than just “not knowing.” It means we know something, but it is the wrong thing. Ignorance is misperception.

Don’t know mind represents something else entirely. It is beyond knowing and not knowing….

Don’t know mind is not limited by agendas, roles, and expectations. It is free to discover. When we are filled with knowing, when our minds are made up, it narrows our vision, obscures our ability to see the whole picture, and limits our capacity to act. We only see what our knowing allows us to see…

This moment right here before us, this problem we are tackling… we have never experienced it before. When we enter a situation with don’t know mind, we have a pure willingness to do so, without attachment to a particular view or outcome. We don’t throw our knowledge away – it is always there in the background, ready to come to our aid should we need it – but we let go of fixed ideas. We let go of control.

Don’t know mind is an invitation to enter life with fresh eyes, to empty our minds and open our hearts.”

The Five Invitations by Frank Ostaseski

The Awkwardness of New Surroundings – Change Can Hurt

Change can hurt. Literally and figuratively.

I sold my house last week and I’ve arrived in California. Sausalito, to be exact, just north over the Golden Gate Bridge from San Francisco. I’m in tiny temporary quarters until the renovations on the place I’ve rented are complete. Though the space is small, the bed is tall – 5 ½ feet off the ground with a metal stepladder to go up to it.

First night, 4 AM (7AM on my body clock) I decided to get up. I stepped carefully down to the first step, then automatically stretched my leg down for the ground as I was used to doing at home when I used the small stepladder I had at home. Yes, you guessed it. My leg did not reach the ground and I tumbled down, banging up both my knees.

Luckily, the only damage was blacks and blues, not any serious injuries. But it demonstrates to me how much our brains and bodies are attached to our old ways of doing things.

It’s been 3 weeks today since I left my Florida house, the house we outfitted with things to make life easier for my husband, like a touch faucet in the kitchen. I’m still banging the faucet here trying to turn it on and off. How long will it take for my brain to learn the new pattern?

Far more distressing is the discomfort of the unfamiliar, from the view out the window, the faces I see walking the dog, the dials on the stove, to the furniture. Our brains automatically react to unfamiliar stimuli as dangerous – it’s a survival tactic? Consciously we don’t think that because our brains are doing an override, making sense of what’s new, but it still feels strange. When it’s familiar our brain doesn’t have to do any work.

There’s also the complete sense of incompetence that comes from not knowing. Not knowing where to put the trash. How to get to the grocery store. What the COVID rules are within the grocery store. Etc.etc.. I felt like crying first time in the grocery store. It’s incredibly uncomfortable to feel so unskilled.

So what’s the lesson in all this? My move wasn’t the wrong thing to do just because I’m uncomfortable, or in pain, even. Same with any changes you go through.

Just because it feels scary or uncomfortable doesn’t mean the old way is better, though our brains will tell us that as a reflex. Just because we feel stupid or incompetent because we don’t get it at first, doesn’t mean we won’t get it or that the change is wrong.

It’s a matter of hanging in there, letting our bodies and brains get accustomed to the new patterns, new ways of doing things, telling ourselves that the feelings of discomfort are normal. Repeating “things will get better.”

Starting a New Chapter – Emerging from the Cocoon

Image of the butterfly saying that we may need to cocoon before we grow — Cocoon Before Emerging

I haven’t posted for a long time. It’s been two years this month since my husband died, and I’ve just started a new chapter.

Because of COVID, I spent 380 days mostly alone. Since nothing much was happening externally, I figured I had nothing much to write about.

Having moved to Florida only 5 years ago with no family nearby, I had no “pod” with whom to shelter in place with. I had a friend I walked with a few evenings a week. Lots of people I Zoomed with, both friends and clients. But I ate almost all those 1140 meals alone. Filled all those many many hours alone.

But as I’ve started to emerge from my cocoon, I realize it helped me to learn a lot about taking care of myself. The first year without Larry the neighbors rallied round, inviting me to lunches, dinners, parties. I was living our couples’ life, just alone. I did a lot of things to fill time without thinking whether I wanted to do them or no. And some things I did to allow others to feel they were helping me. I wasn’t spending much time figuring out who I was or what I wanted.

This last year I had plenty of time to think. To meander through past memories, both good and bad. To ponder the future. To explore and experiment with what made ME happy, what foods I liked to eat, what I wanted to do and when. I had no excuses to make about why I didn’t want to go out. I didn’t even have the responsibility of deciding whether or not to go out and about.

I started to learn Spanish, played the piano more than I’d had in years, swam laps every day, did hula hoop fitness in the back yard, and did a lot of writing and painting. I took on a healthcare client who wanted to provide stress relief to their staff and did lots of research on resilience and mindfulness. I meditated and journaled a lot! For the first time I joined my art and writing and work with weekly resilience messages coupled with a painting.

I finally decided it was time to move. I’d known I wouldn’t keep the large house for myself from the beginning but it was lovely to have so much space while I was house bound. With no family around, the work and cost to maintain it didn’t seem to make sense and Florida was never a forever destination for me.

The problem was I didn’t know where I wanted to move TO. The 15 months without family made moving close to family seem so much more important than ever before but my kids live in the most expensive cities in the country on the opposite coast!! I think grief hampers decision making for some of us – everything compared to care giving should feel easy but for some reason making decisions alone seemed hard (even though I had been making decisions alone for years – but with a sounding board that was now gone.)

The work of getting the house ready to sell, choosing how and when to sell, and starting the process of shedding so many possessions was incredibly daunting and had me procrastinating out of fear for many months. Fear is so sticky – I couldn’t move in any direction. Finally I decided that if I could find the strength and skills to support my husband while he was deteriorating daily and still find joy for us in each day, then I could support myself through this next big thing! And I have. I moved 3 weeks ago.

When feeling fear we have to look at how we’ve come through difficult things in the past, look for our strengths, look for courage to continue to face difficult things. Without self-pity. Without carrying a list of all the bad or tough things we’ve had to go through. But we also have to be compassionate and gentle with the scars we carry. It’s a fine balance, but the only way to move forward.

50 Days of Eating Alone

Socially Distant Flowers Quarantine? Lock down? Shelter-in-place? Stay Home, Stay Safe? Whatever you call it, I’ve been home alone. I’ve kept a journal of my reactions. And it’s a way of having a morning conversation. With myself. I’ve tracked it – it’s been 50 days of eating alone. Every meal.

I see people when I walk the dog. I’ve had plenty of conversations on the phone, or video chats with family and friends using FaceTime or Zoom.

I’ve even taken a few socially connected but physically distanced walks with a neighbor.

Mostly, though, I’ve been alone with my thoughts (and my dog).

I hate listening to the news. I hate the disrespect for the science. I hate hearing about and thinking about all the deaths, all the illness, all the loss – life, jobs, businesses, food, family, connection, celebrations, funerals. There’s so much loss and grief.

But for me it hasn’t been all bad. I don’t have to psyche myself up to accept invitations I’m not up to going to. I’ve had time to do a lot of journaling and a lot of meditation, including loving kindness meditation where I send compassion to myself, my family, my friends, and to the world. I practice gratitude daily. I practice staying in the present.

I’ve done art. I’ve started playing piano again. I’ve gotten a lot of projects done around the house.

I get bored. I miss hugs. I miss being able to travel to see my kids. I’ve had occasional crying jags where the pain of missing Larry is all too acute. But all in all I feel pretty ok. Actually, I feel more whole again. I think this time has helped me finish my healing. Not finish because I’m sure there will be more, but maybe move on from healing as a primary necessity. I didn’t even notice the passage of the monthly anniversary of Larry’s death on May 2.

I can’t say I look forward to getting back to normal because I’ve some to the conclusion there won’t be the old normal anymore. We’ll have to figure out a way to live in this new coronavirus infected world. My state is opening up and people are out and about working, shopping, and socializing. But I’m not sure I’m ready to go out. I’m not confident of the safety. I’m not confident it will bring me anything I don’t already have.

Except maybe not eating alone. And a hug or two.

Grief of One Year and Grief in the World

Still life of fruit separated on a table just as we have to be separated by 6 feet in the world — Still Life: Social Distancing

Today, at 9:02 PM, unbelievably, it will be one year since my husband died. I dreaded this day coming. Another “first.” But it seems a bit trivial to feel sorry for myself in the light of all the grief in the world. Great loss makes us more open to others’ pain. I resonate with the grief in my extended family for the loss of a daughter/mother, wife, sister to colon cancer last week. Today I resonate with the grief in the world of 48,290 families – that’s the coronavirus death count as I write this. If each person who died had 10 people mourning them that’s 480,000 people, most of whom never were able to say goodbye or even be with their loved one as they passed from this world.

A year seems so long. Without him. I still feel married. Still wear my ring, His picture sits in front of me and his smile still makes me smile. Yet so much has changed. In my life. In the world.

I miss holding hands. I miss hugs. I miss his jokes, and his calmness. I miss his acceptance and his optimism. I miss Larry!

For a roof inspection last week (too complicated to explain here) I had to read through my journals from three years ago. It made me realize just how incredibly hard things were for both of us. I had forgotten??? What I read made me so much more compassionate for how much healing I’ve had to do. Still have to do. More compassionate for how little I’ve done to move on this year. You can’t expect to accomplish much from yourself when you are grieving.

And now the world is grieving. Grieving deaths and grieving lost freedoms. Grieving loss of work and loss of income. Grieving normal rhythms and activities. Grieving that fragile and unrealistic sense of predictability that our “normal” lives give us.

I had to learn how to live with uncertainty. I had to learn to stay in the present. I had to learn to live alone. I had to learn how to be intentionally social when I need to, and how to wrap myself in a cocoon when that seemed right. I had to learn how to let the darkest moments of grief wash over and through me, and also to let them go and get on with it. These are all skills that serve me well in this time of coronavirus.

I had originally thought I’d commemorate this day by flying to Maine and visiting his gravesite. Nope. Then I thought maybe I’d gather some friends to talk about him. Not in these days of social distancing, and so much grief in the world.

Tonight, I’ll light a candle at 9:02, for all our losses. If you knew him, maybe you will to.

Otherwise, I won’t do much of anything special today. After all. This isn’t an ending.

Lessons from Larry in this Chaotic Time

Larry looking at the turquoise waters from Sharky's Pier My husband faced the deterioration of his body and the inevitability of his impending death (yes we all know we’re going to die sometime but it’s different when you know it’s sometime soon). Somehow he maintained his grace, gratitude, and goodwill. I think these lessons from Larry we can all apply at this time of world chaos.

Everything became unpredictable to him, from the daily ability to hold a spoon, to the ability to draw an easy breath. And now everything is becoming unpredictable to us, from where we can go, to wondering if we’ll have money to survive, to searching for a store selling toilet paper. Somehow Larry learned how to accept whatever came that day, without giving up, without wasting energy mentally fighting it and without complaining.

We have to accept, and not give up, but not waste energy wishing what is happening isn’t happening. Because it is. And really stop complaining about being asked to stay home so as to save lives of others more vulnerable.

Larry found a way to continue to appreciate life in an increasingly small “lifespace,” as international, then local travel, then even walking became impossible. The beach was a favorite place to relax and regroup, first playing frisbee or paddle ball, then just walking, then just sitting and enjoying the water. When he could no longer navigate the sand, we’d just drive to the water and sit in the car and enjoy the view.

Now, our collective lifespace seems to be shrinking rapidly – my daughter lives in one of the California counties that needs to “shelter in place.” Just like Larry, we have no choice, other than how we react. We can rant about it and wish it weren’t so, or we can find ways to live with it, and appreciate life in whatever way we can experience it.

Over time, Larry lost the predictable schedule of daily work, and as many retirees find, no longer knew the days of the week by the activities on his calendar. But in its place a different rhythm took over – a rhythm that became both comforting (and sometimes annoying). It was the varied but predictable rhythm of physical exercises, voice exercises, and lung treatments.

We are rapidly losing our predictable schedules and it’s hard to adjust. We need to rapidly put new rhythms in place, creating some variety and predictability for ourselves, because who else will do it for us?

Larry was open about his problems and in his acceptance of his vulnerability, he drew people to him. He was always grateful for the help he received, even though he didn’t want to be in the position of needing help. He always wanted to help others, and worked on helping family members even in his last year. When he couldn’t speak much, he continued to communicate and show he cared about others with a few words or a smile.

This is perhaps the most important of all the lessons from Larry. We need to be open about how vulnerable we feel – honest with ourselves and each other. And we need to communicate and show we care, help others, and be grateful for one another.

We’re all in this together. Unlike Larry, we will survive. Let’s pay attention to these lessons from Larry, his gift to us, and let’s help each other survive with grace, gratitude, and goodwill.