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.
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.
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.”
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.”
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.
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.
Just like Eskimo tribes are said to have 200 words for snow, we need many more words for grief. Is the grief I feel today the same as the grief I felt when Larry first died? Is the rush of “ambush grief” that overtakes me unawares and strikes me down, the same as the gentle fond grief I feel when I catch sight of one of his photos?
I was reading a post on a widow/widower discussion group that talked about someone naming grief that lasted too long “stale grief.” That strikes me as wrong in so many ways. What’s too long? When I cried in my neighbor’s arms this morning and it’s almost a year since Larry died is that stale grief? Would it be if it had been 2 years?
I remember my mother tearing up talking about my father who had died thirty years earlier. She’d gone on to figure out how to live alone, how to parent alone, how to fall in love again, and have a wonderfully happy second marriage. Was her grief in that moment of remembering “stale grief?” We need more words for grief!
Words help us make sense of the world. They help us see similarities and differences. They help us understand ourselves and others. “My task, which I am trying to achieve is, by the power of the written word, to make you hear, to make you feel–it is, before all, to make you see,” wrote noted author Joseph Conrad. How can I understand, or help others understand, when I can’t find the words?
Do we not have more words for grief because the English are not ones to be comfortable around grief, don’t really want to talk or hear about it?
I was curious about words associated with grief in different cultures. In Persian, the word for grief is also the word for regret and the two emotions are seen as similar. In a particular regional Russian language, the word for grief is more similar to anxiety. In Austronesian languages the word for grief is often paired not only with regret and anxiety but also with love. There is a Farsi word for sadness or grief that has a more physical connotation – ,Ghoseh – to have emptiness. And a Japanese word, natsukashii, which is the sadness and longing for something that will never come again. Or even the German word, Mutterseelinallein, which is a feeling of being abandoned by everyone you love, literally translated as “your mother’s soul has left you.”
There are times when I feel grief, like today, that has more of a sense of anxiety of being alone in the world, and how to make/take the next steps alone. Other times I experience grief I would identify more as the deepest sense of loss – a major part of my life, myself, gone missing. Sometimes grief feels physical – like being sliced open by a machete. Sometimes it’s like a rush of love.
I experience grief at different intensities. Sometimes it’s a tiny drip, sometimes it’s a fire hose unleashed.
And then there are the different relationships we’ve had with the lost – mother, daughter, wife, brother – and the quality of those relationships – loving, estranged, angry, complicated – that change the way we feel grief.
These feelings are not the same, even though we use the same word. I wonder if it would help the process make more sense, help us talk about it with more clarity, if we had more words for grief, words that would describe the nuances of grief.
Yesterday marked ten months since my husband died. Ten months! And I’m just recovering from three weeks of illness – Influenza A, then sinus infection and bronchitis. Ten months of grief and the flu is not a good combination.
Grief at this point mostly sits in the background, always there, but more of a low buzzing than a loud drumbeat. Except when those “grief ambushes” occur. The problem is that the low buzzing still uses brain power and heart power to manage, leaving not a lot left over for the normal challenges of life, like the flu.
I read some research several years ago about students who were put in a room with warm chocolate cookies and told they couldn’t eat them but they had to solve what in effect was an unsolvable math problem. They gave up on the math problem very quickly, compared to the students who were told they could eat the cookies. The first group’s emotional control got used up on resisting the cookies and they had no stamina left to confront the math challenge.
That was me, after the succession of holiday grief ambushes. I told someone it was like I had been in a prize fight with a much stronger opponent. I get in the ring and get pummeled by Thanksgiving and go down. I struggle to my feet, wipe the sweat from my brow, or the tears from my cheeks, and I get punched again by Larry’s birthday. Thankfully the bell rings and I have a few weeks in my corner to marshall my strength for Christmas. Then back into the ring where I’m knocked down again. I stumble to my feet and get pummeled again by New Years. Now I’m staggering, nothing left to find my balance, and then I get sucker punched by the flu. And… I’m down for the count. Now I really and truly physically feel like I’ve been pummeled by a prizefighter.
Everything hurt – eyes, teeth, whole body. Even my hair hurt. I wondered if that was how Larry felt toward the end.
Being sick is rotten but being sick alone is awful. The first days of the flu when my fever was up over 103, I just ached and slept. But once the fever broke, I started down the self-pity path.
I had nothing left emotionally to combat the slide. I wanted Larry. I wanted my Mom. I could find no comfortable place in my mind, my imagination, or my heart. I had so many hours with not enough energy to do anything, and just enough energy to pay attention to how much I missed my husband.
Finally I started to think about why the flu – why now? I’m sure I was exposed to flu germs over the last three years and never got it. Every year I get the flu shot and this year was no exception. So why?
On top of the holidays, I was putting pressure on myself to make decisions about the future. I was facing lots of new options that were confusing. I pushed myself physically – draining my last energy on an 8 mile kayak trip.
So my body gave out. I began to wonder if my body remembered how to be well. But I also wondered what benefit was this illness providing? I didn’t have to go out and face the world. I couldn’t have much in the way of visitors because I was contagious. The flu provided an enforced cocoon.
Maybe that’s exactly what I needed in order to rebalance. Maybe that’s what I needed to restore – like a farmer leaving a field unplanted so it re-nourishes itself.
Ten months of grief and the flu took their toll, but I’m still here, quietly getting ready for whatever will come next.
You care for people at their most vulnerable time, but mostly your care is for a very brief time. Tidewell Hospice here in Sarasota quotes the average length of stay as 14 days. When we were admitted that’s about how long we thought we’d be with you. But instead we were in for the long haul. Six months before you discharged us. About 3 weeks out. Then maybe 3 more weeks back under your care.
In our situation with a progressive neurological disease, once the precipitating symptom to contact you was brought under control, the disease still progressed but it was a time you should have started to treat us differently. We were no longer on a precipice, but on an unknown and significant decline. But different from cancer!
You could have been so much more help if you had recognized we didn’t fit your norm. Please, please do it differently for others.
It could have started when you first admitted us and made such a big deal about hospice care not being curative and did we understand that. You didn’t understand that this disease diagnosis came with the words “no cure – terminal.” This was not a transition for us.
You should have started our care by doing the research to understand the disease. We wished for clear guidance about the disease course and what to expect from you as symptoms progressed over time. Instead, we had to do the research and provide it to you, and often you ignored it. You need to listen to patient and caregiver knowledge and amass your own knowledge even if just on an as-needed basis. You should have encouraged us to keep our neurologist involved.
You need to educate yourself about typical causes of death for this particular disease. We didn’t look like cancer, but you looked at us the same. You didn’t track the appropriate measures of decline for his disease, which ultimately led to you discharging us and causing us a horrific last few months. You should have told us what you were tracking, especially as the nurses spent so much time doing it in our presence. We could have told you it didn’t apply.
Your must understand which drugs that can’t be used for this disease, and which drugs only work for this disease’s symptoms. For example, you refused to supply the only constipation med that had worked for Larry in spite of us explaining the significance of constipation in MSA quality of life. You insisted we use your formulary, in spite of the fact that he had tried those drugs and they hadn’t worked. EVER.
You should make sure to set more appropriate patient and caregiver expectations about roles of each of the hospice team members including how often a doctor or other provider will be involved and under what cirucumstances. Do this again after the initial crisis has passed. Your people kept telling us we would be getting all the “good stuff now,” like massages. That happened twice in 7 months. And doctors – never. We went from making the rounds of many specialists regularly all for symptom control to never seeing a doctor or PA or NP in the whole time we were with you.
Provide appropriate and timely answers to questions about symptoms that have to be brought by the nurse to the doctor we never saw. We were used to getting immediate answers when we sat with the doctor instead of addressing them to the nurse who might or might not remember to bring back answers on her next visit in a week or two.
Instead of wanting to manage his autonomic symptoms that were impacting his quality of life, you only wanted to manage the pain. And you only seemed to want to manage it pharmaceutically, instead of with other measures. Instead of the equipment your physical therapist recommended for managing pressure sores, you offered pain meds.
You should have educated us on how to prevent or mitigate new symptoms that might be expected as symptoms progressed. Having no experience with pressure sores, we didn’t recognize them as Larry’s mobility declined. There were things we could have done earlier to prevent them. You pretty much ignored them until they were horrific. “That happens,” you said. But he wasn’t even bed bound!
Communicate clearly, empathetically, and honestly. Make sure your phone system works exceptionally well and doesn’t require much effort or time to get to someone who knows me or at least can access my situation. How come my hairdresser can answer my calls with my name but you can’t find me?
Ask your staff to think about where the patient and caregiver might be emotionally and/or physically before they make a phone call or a visit. Too often we were bombarded with something that didn’t fit – whether it was insistence on their schedule and not ours – like coming early in the day before he was awake – or emotions that didn’t meet ours. Don’t bring false cheeriness or false sadness. Look where we are.
Prepare us for changes. You discharged us with no face-to-face, no warning, and no help to replace your care. I know from my healthcare experience that transitions of care are always hard, and I’ve seen them botched many times. But I’ve never completely experienced such trauma.
Because of the lack of palliative care services, once we were discharged we had no where to get coordinated help. We made the rounds of individual specialists again. And because Medicare required all the qualifying tests to be passed to replace medical equipment that had been provided through hospice, we had to jump through hoops and more hoops, when we were in such a precarious state, emotionally and physically.
So if you have to discharge someone with a progressive neurological disease, give them plenty of warning. Understand what a traumatic event this will be, what a disruption to their lives, and figure out ways to minimize that disruption for them. Don’t tell them it’s “good news.” Give them (not just a fax to the primary care doc) written instructions on how to transition the care. Help them emotionally while they are still under your care because there’s no one there to help them once they are discharged.
The most precious resource you provided us was a CNA to help with showers. Probably the lowest paid person in the place. Treat them well.
This is already too long for you to read, and too upsetting for me to write.
I wish hospice wasn’t our only choice. I wish coordinated care didn’t have to come with a die-in-6-months time frame. I wish you’d listen to me and make changes!
Then the recovery of some strength and better breathing and almost back to pre-crisis (except for random episodes of weird symptoms). Then things seemed stable enough for me to manage alone with him, and to plan the vacation. Then vacation (with it’s own mini-crises). Lots of action.
Now we’re back, but where are we? Are we near the end? We’re still under hospice care.
Are we proceeding with our lives? We went to a Selby Gardens outdoor concert last Sunday and to the beach for sunset on Thursday.
I asked Larry if he thought being in hospice was a psychological disadvantage that outweighs the benefits? After all, they know nothing about his disease. They’re good with the equipment we asked for, good with sending meds, good for the CNA help. But medically they just shake their heads when I mention a weird symptom. So does being in hospice make us feel closer to death?
He said “No, all positive.”
In some ways, I just feel like I’m always waiting. Like now. Waiting for him to wake up so I can help him. Then I’ll wait for him to finish on the toilet so I can help him. Then I’ll wait for him to finish eating breakfast so I can help him with his breathing treatments. And always waiting for the next shoe to drop. I can’t wait for him to get better. I don’t want to wait for him to get worse. I can’t do anything about any of it. I’m in suspended animation.
I know, I know. I need to stay in the present. Right now I’m just finding it hard.
Just the other day I looked out a window and saw a couple doing their morning walk together. Just a simple walk. I was SO jealous!
His breathing has been gurgly recently. It’s such torture to listen to. I asked him if it bummed him out that it had gotten worse again. He shrugged and said “not really – it’s all just part of the disease.” He has such amazing equanimity.
We weighed him. He was 168 pounds. Later he joked to me. “Last time I weighed myself I was 190. I missed the 80’s and 70’s.” He takes it in stride. I see a gaunt face, a body wasting. (Although his gaunt face is actually making him look very sexy.)
I used to go at 120%. I never had time for anything. Now I have lots of time, in some ways, bits of time here and there, unknown lengths of time. It’s hard to start anything when you don’t know how much time you’ll have. Even a cup of coffee.
So here I sit. A caregiver in suspended animation. Looking for my resilience.