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.
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.
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.
Who knew that New Year’s Day would bring such new year’s grief? Actually, a friend who is a retired grief counselor knew but we didn’t get together about it till yesterday. She said she’d always warn people about it and they wouldn’t believe her
Then I flew home on New Year’s Eve and enjoyed sunset on the beach with friends. All ok.
But starting the next morning all resilience was gone. Although January 1 is just another day, it seemed so significant to start a new year without my husband. The first of many. Impossible.
I felt bereft without Larry. So lonely.
I could blame it on the jet lag, and certainly that didn’t help.
But there’s no question that all these “Firsts” are hard to navigate and they’ve come so quickly. My first birthday without him in October. My first Thanksgiving without him in November. His birthday in early December. Christmas. And now the new year.
There’s something so symbolic about the new year. It’s all about the passage of time, and the passage of time makes you look at yourself and your life – both past and future. After all, the custom of resolutions is associated with the start of a new year, whether or not you make them or keep them. At the very least, it’s time to tackle all the things you postponed until “after the holidays.” At the most, it’s a fresh start, a time of new beginnings, time to start new things, and leave others behind.
So what did I postpone as I worked to hold myself together through the holidays? Not little things, big things!
All the big decisions about new beginnings. What am I going to do with the rest of my life? Should I try to rebuild my consulting business? Should I do some other kind of work ? Retire? Where am I going to spend the rest of my life? When should I sell my big house that I rattle around in alone, making me feel even lonelier – a single small being in a space meant for two, or three or four.
I pushed myself hard in the last few days to start making some of these decisions. Then I started having panic attacks and I haven’t been sleeping.
The passage into a new year facing an unknown future alone is scary. And it feels sort of like leaving Larry behind in last year. I miss him. There is no place of safety or security in my mind or in my heart.
Finally I realized I have to do more healing first, before pushing forward. Get over the holidays. Get past this first rush of new year’s grief. Get my feet back under me. Stay in the present. Adjust to being home, to being alone after being with family. Not worry about big decisions, until tomorrow, or next week or month. To stay present in today.
I’ve meditated, alone and in a group. I’ve allowed myself to cry. I’ve gone back to exercising, to yoga. I’m journaling and studying a bit about healing trauma – as caregiving over time involves traumatic experiences. I’m doing artwork. I’m tackling little projects, errands where I can feel like I got something done. I’m seeing friends.
I’m still feeling crappy, but I am feeling less crappy than last week. I’m okay with that as progress through the new year’s grief.
My husband died on April 2. I can’t believe it’s been eight months since his death. Three quarters of a year gone by that I barely remember. I think I’m just beginning to wake up again, from the death and perhaps even more from the months and years of illness that preceded it.
I’ve been rereading the best book on managing to live while grieving – Resilient Grieving by Lucy Hone. It’s got an optimistic active view about what to do, rather than the passive view that it will just take time. It’s not just about the research (like Bonanno’s) that says the majority of people will recover to full function in about 6 months to a year, but it’s about research that tells you HOW to recover.
I’ve been doing such activities – traveling, trying new things, meditating, exercising, journaling, spending time with friends, even taking on new clients, while allowing myself to also nap in the hammock and cry when I need to.
So I’ve been asking myself why I felt such deep anguish over Thanksgiving, finding myself dissolving into tears multiple times for several days. Hone talks about something she calls “grief ambush,” that she describes as the sadness overtaking you suddenly from some trigger that brings you back to the past.
Thanksgiving was a trigger like that for me, bringing me back to so many wonderful holidays with Larry,
In the first eight months since his death, the loss was dulled somehow by all the challenges of the illness. His decline, his frustration, his incapacity, the hopelessness of it all – that was front and center. I found it hard to even remember Larry before the symptoms of Multiple System Atrophy.
But this Thanksgiving brought healthy Larry back, and part of the anguish was that for the first time I grieved all those six years of darkness. All those years that I was so strong, so positive – trying to match his positive spirit. After eight months since his death, in those days surrounding Thanksgiving, I was finally able to grieve the loss of healthy Larry.
And being by myself for the days surrounding the holiday (except for a few hours while I ate turkey), it really sank in that I am alone in the world, the only one responsible for me. Yes, with friends, yes with family, but ultimately alone.
I feel like that descent was necessary. Maybe I’ve passed into a new phase. I’ve felt so wounded from it all and in need of rest, recover, cocooning – staying still in a way. Maybe I might be ready to start to move, literally and figuratively.
I know that grief is full of twists and turns and it’s not just a list of stages you go through in an orderly fashion, so who knows what will come next.
But today, eight months since his death, and fifteen months since he was first admitted to hospice, I’m thinking that it’s time to find a life for myself.
We always used to invite “strays” for Thanksgiving – people who would otherwise have holidays alone. Now I’m the stray. I have an invite for tomorrow, but it’s Thanksgiving eve and I’m sitting home alone (well, with my dog.) Working hard at not feeling sorry for myself.
All around me are houses full of guests, or empty ones that my neighbors have left to travel to their families. For days people have been shopping, cleaning, preparing. They ask me “where are you going?” with a sort of pitiful gentleness. They want to make sure I’m not alone. I’m grateful for the invitations, but I just wish it were over. These first holidays alone are hard!
I’ve done my best to make it as “less miserable” as possible. I’ve accepted an invite to join my neighbors, where I’ve never celebrated with Larry so there will be no associated memories.
I tried to be good to myself today. Bought myself sushi for dinner so I didn’t have to cook. Bacon for breakfast tomorrow – an unusual treat I don’t often cook for myself. I took my kayak out for a sunset paddle and the sunset didn’t disappoint but I sat at the edge of tears trying to enjoy it alone. I lit a fire for myself when I came home.
I know there is no getting past the grief, the loneliness. No going around it, just through it.
Grief around the holidays is the worst – it’s raw tasting. It’s coarse and gritty in texture and upsets my stomach. It’s like a turkey dinner in a fun house mirror – it sort of looks right but isn’t right at all. Not at all.
I don’t know why the grief feels so different right now. Perhaps there’s some self-pity flavoring it. Maybe some anger. There’s the oh-so-poignant comparison to memories of better times, and the societal expectation of Hallmark and Currier and Ives.
Larry loved Thanksgiving! It was his holiday to shine. He loved to cook and spent weeks choosing recipes. He loved to feed people, giving them much to choose from. Two turkeys, one for the table, one for leftovers to share. Many vegetable dishes, several stuffings. Mashed potatoes, gravy. Home made cranberry sauce. Everything, everything was made from scratch. My job was multiple pies and a pretty table. Oh, and a Thanksgiving ritual of the gratitude tree that we covered with leaves on which we wrote our thanks for all that was good in our life.
I practiced acts of gratitude today. I sent a book to a friend who helped me find the Caregiver Grant and pointed me to Santa Fe. I arranged flowers and delivered them to my host for tomorrow. I gave a floating Christmas tree to my neighbors who feed me once a week, and made some Coconut Sugar Body Scrub to thank my hula hoop teacher who has given me the chance to be playful through these dark months.
It’s finally late enough I can go to bed and this day will be over. And then tomorrow. Neither the good NOR the bad last forever. It’s all temporary, just like our lives on earth. I will get through it. I may be alone tonight but at least I know there are a lot of people are out there who love me and who I love. And I won’t spend the holidays alone. That’s luckier than a lot of people. That’s a lot to be grateful for.
The trip was an amazing experience. I had been awarded one of their Caregiver Grants, which gave me both the ability and the initiative to do something for myself, which I was sorely lacking after the years of caring for my husband and the months of grieving.
As I drove to the airport in Tampa in the dark of night, I felt a great relief leaving everything behind. I was going to a place with no memories, no family, no grief attached to it.
Yes, I brought my grief and certainly cried at times. But it was reassuring to know that I could also have a good time. “Both/And.” I could revel in noticing that I only had to worry about me, take care of me! One afternoon while journaling in front of a fire in the hotel lounge, I watched a couple negotiating what they’d do next. It was kind of nice to know I could just go off and do whatever I wanted, and I did! (I did crash when I got home and felt pure anger at not being able to share retirement with Larry.)
I came back with a new sense of possibility about my future alone, a sense of renewed confidence in my own ability to make things happen.
The trip itself was a perfect choice. I was glad to have been on an all women trip as it created an atmosphere where vulnerability and intimacy was easy. Plus I was never the odd single among couples.
Our guide, Vannetta Perry, was amazing – creating a “safe” environment for all of us. As a professional facilitator, I have often cringed when encountering unskilled leadership. She was exceptional – making everything easy. Her knowledge of the area culture, geology, and history was a great part of our learning experience.
I’d never been to Santa Fe and found the art, cultural diversity, architecture, and natural beauty to be stunning. The breadth of experiences that were part of the trip – cooking, art, Zen meditation, yoga, hot springs, women healers, history – were themselves diverse and enriching. The hotel was great, the meals were great. And I found enough time on my own to take advantage of a few of the amazing museums.
I even wondered what it would be like to move to Santa Fe, or any place where I had no history, creating an entirely new life. I’m not ready for that, yet, but it was nice to have as a thought to consider.
I felt courageous for having chosen to travel alone, courageous for taking an extra day on my own, courageous for having rented a car to go out of town into the foothills and find Sanctuario de Chimayo, an ancient healing spot.
All in all, I returned with a sense of my own “agency” – ability to make things happen. Someone asked me if it helped with the grief, and what I answered was that it helped me separate the grief from the pain. I’ll always feel the loss but I don’t always have to feel in pain – a victim of the loss. Making things happen and feeling courageous is a great antidote to self-pity.
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!
I’m ANGRY. Again. Recently I met with Tidewell Hospice leaders after sending a letter full of the ways I felt they failed my husband and me with their care. They robbed us of our quality of life in the last few months. I came to the meeting with a list of ideas I had about how they could do a better job for patients who have neurological diseases, rare diseases, or lengthy stays. I sent the list by email after we met.
It took a lot of energy and courage to meet. I had to prepare by reviewing the worst months of our lives. I had to manage the anger and sadness that welled up every time I sat down to write down my thoughts, just as I am managing it now – my shoulders and neck tightening, the tears welling up, the lump in my stomach.
I haven’t heard back though it’s been 6 weeks. Not a thank you for your time, not a sorry, not any info about actions they are taking, in spite of them telling me they would be taking action. I did receive a request to leave them a legacy gift – mention them in my will. HA.
I met with the CEO, the Medical Director, and the Nurse Director of Home Care teams – people who have the power to take action. My fingers are shaking as I type, full of the impotence I felt while they provided their care, and my continued inability to affect change.
As I look back over the course of his disease I see so many gaping holes in the healthcare system for his neurological disease, that seem more readily filled in the field of cancer treament.
Doctors are SO poorly prepared to give bad news! And the reimbursement system doesn’t give them the necessary time to spend on doing it well.
When new doctors started suggesting Larry might have something other than Parkinson’s, I remember one particularly staggering moment. The neurologist said “it might be ALS, so I’ll arrange some tests.” He sounded sort of excited about the diagnosis process. His only advice was “don’t believe what your read online about life expectancy.”
We moved on to the next neurologist who confirmed it was MSA, saying “I know this is rough news. We will do our best to keep you comfortable and enjoying a good quality of life for as long as possible.”
At least there was some recognition of the emotional import of the news.
But who was the ‘we’ who would help us? We saw him every three months for 10 minutes. Who else could we turn to? Google became our best friend. We were faced with a terminal diagnosis with no support.
As his symptoms progressed we made the rounds from the primary care doctor to the specialists – gastroeterologist, urologist, dermatologist, neurologist, and then with pulmonology, cardiology. There was no coordination of care, no teamwork, no place for our emotions. We had no support groups, as the Parkinson’s groups we’d previously attended were not dealing with the terminal diagnosis that we were dealing with.
I looked for palliative care specialists. I found one at the hospital and left a message but received no reply. We weren’t hospitalized, after all. I asked the neurologist. He said that palliative care was what you received in the hospital and that hospice was what you received at home, but he didn’t think we’d qualify for hospice yet.
I knew from my daughter who is a researcher in hospice and palliative care that he wasn’t right in the academic definitions, but he WAS right in the practical definition.
In essence it was the practical definition of hospice, the way it is defined and paid for that finally did us in. Tidewell Hospice’s complete lack of understanding of the course of his neurological disease. The “six months til death or you’re out” definition, that sent us into a tailspin those last three months.
Okay, I thought I was past my anger but as I write this I realize I’m not at all past it. I was hoping that the list of ideas I submitted to Tidewell Hospice, which I’ll share in another post as this one is already too long, might at least help provide better care for the next neurological patient, making some good come from our bad care. But no. It seems my experience of them not listening continues.
So tomorrow I will write an open letter to all hospices. I will write all the ways I wish we had received care.