Now I can talk about it

Sunday I talked with a dear friend whose partner is dying of pancreatic cancer. She walked to the top of their garden in the West Virginia mountains to get better cell reception.

Our conversation was surreal. Were we really talking about him dying?

“I am in a dream,” she wrote in January after he was diagnosed. “Never felt so full of love and yet so  shattered. Never felt so potentially devastated by a loss. I feel like I don’t know ANYTHING for sure anymore….cause and effect seem unknowable.  But I do know that I am where I should be and that all of this is very closely related to my life work.”

She had finished a master’s degree in social work last June, a degree she long sought to give her credentials for the work she had already been doing. She is a natural counselor and had helped other people die. She is a massage therapist, a conservator of the land, a dog lover, a lover of life, a giver. She wanted to give more.

Last summer she got her first social work job at a domestic violence shelter. It was a first step. Even though she loved her man, she had no plans to marry him. He lived isolated on the mountain 30 miles from town. She was involved in the happenings of her community. She had been married before and hurt before. She was holding him at arm’s length

And then, like life is apt to do, everything changed in a moment. She was no longer holding him at at arm’s length. Within a month she quit her job, left her house in the city, and moved to the mountains. She has been his caretaker, his midwife to his journey. He deeded his mountain retreat and home to her so that she would have something when he was gone. He has no children, nor does she.

“We have been nesting like honeymooners,” she said yesterday, “and then he is going to leave.”

She wept. Our phone connection faded and I couldn’t hear her. She moved further up the mountain.

Her pain pierces me, her open heart instructs me. Even though she is in exquisite pain, she is conscious and breathing. She reminded me of the work of Stephen Levine, author of Who Dies, An Investigation of Conscious Living and Conscious Dying, who instructs people to breathe through their bellies…that’s where people hold their grief, he says.

I began to breathe through my belly, and felt the tears come.  She waited. Understanding.

They sought out all the treatment options. He saw the best oncologists. People across the country have been praying. When he visited his sister in New Mexico he saw a healer, who told him to open his heart to the experience, that his body may not be healed, but his spirit will.

My friend says he is slowly disappearing, communicating less and less. She knows the cancer has metastasized to the liver.

“I feel so needy,” she said, a woman not prone to being needy. “I want him to affirm me and to tell me I am the love of his life. But he doesn’t talk.”

“He gave you a mountain,” I say.

“Reminding me of that helps,” she says.

He will leave her alone there. But she is grateful.

“If I thought I was going to be homeless and without a job when this is over, I’m not sure I could stand the stress,” she says

I saw a vision of her speaking before large groups of people, sharing the experience of keeping her heart open while losing the love of her life.

“I knew what this was intellectually,” she said. “But now I know it. Now I can talk about it.”

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Spinning orb

There are days I wake up assailed by guilt. Mom told me more than once with eyes ablaze, “Promise me you’ll never ever feel guilty. No daughter could have done more.” But I never promised and I never believed her. I knew I could have been more patient, more kind, more … .  But it wasn’t true. I couldn’t be more than I was. Mom drove me nuts sometimes.

But some days I wake up angry that I feel guilt over the best I could do. I feel guilt even though I recognize the demands of an 18-year caretaking journey that started at a slow pace in the beginning, pneumonia at 87, falling down the stairs at 90, cellulitis at 91, skin cancer surgeries at 92 and 93, more falls, convincing her she needed to stop driving (95), transporting her to the grocery store and to get her hair done every week until she could no longer manage the stairs but bribing my husband to take her down the stairs and him having to say no, lymphedema, lymphoma at 96, two surgeries, chemo and radiation, family dynamics, more falls, broken coccyx, more lymphedema treatments, more convincing that she needed caregivers, her being impatient with caregivers, having to talk to her about being impatient with caregivers and her insisting she’s never been mean to anyone in her life, more falls, caregiver with Munchausen Syndrome calling to tell me mom had MRSA, gout and something else, a stroke that sent her to rehab even though she refused, high blood pressure, aortic aneurysm, more convincing she needed more care, finding right caregivers, family dynamics, her firing the caregivers, me managing caregivers, vascular disease, gout for real, more lymphedema treatments, a broken foot, move to assisted living, moving back from assisted living, onset of dementia that wasn’t dementia, transitory eschemic attacks, throwing her hearing aids at the mirror, hemorrhagic migraine strokes, another TIA, unable to speak, scaring the caregiver, next day being fine, managing every element of her life while I quit my job and turned an ankle, managing her money that was enough but not quite enough and then there was nearly none, paying her bills and washing her sink and making sure her prophy brushes were clean because she couldn’t see they weren’t and making sure the caregivers washed her drinking glasses so that slime didn’t grow, and making sure they documented when she had sores on her feet, instead of ignoring them and letting me find out by accident, and then all the times she had to talk about the past and rework the past and come to resolution about the past, over and over until at the last she was able to accept the past, thinking I was tired of it, but now wishing I could ask her questions I never thought to ask in all those years of talking, congestive heart failure, managing meds, more insisting she needed more care, and more resistance and then more guilt because in all of this I wasn’t the perfect daughter who never lost her patience.

And then I awake with grief because I loved my mother. I miss her hand on my leg and my hands in her hands warming them when they are cold. I miss her sweet smile when I walked in the door, always accepting, always open. I miss her being present in my life, being the crazy glue in the family, sometimes crazy and sometimes the glue and sometimes both. She was generous and funny and through it all she became kinder to her caregivers and more grateful for the care and recognized that she had a team of people around her who loved her. I miss her needing me, which was a prediction my friend Ted made years ago when I was a full-time reporter/photographer at a newspaper and mom had cancer and I had to leave work to help her. I miss being able to say to queries about the holidays, that I thought I’d never ever miss, “What are you doing for the holidays?” and answering, “Oh, mom will be here,” and I wished I hadn’t added the “as usual,” indicating what a pain in the ass she was, but really she added depth and continuity to my life and I didn’t realize how much. I miss the weekly and sometimes nightly conversations with her caregivers, who became my friends, and I miss the community of people who gathered around her, who became my community of people, and who I lost when mom died. I miss being her daughter. I miss her unconditional love. I miss that even to the end of her life, she was still my mother.

And then I awake and I feel relief that she is out of pain, out of suffering, and that the problems that my brother once said were layered one on top of the other, are over, that I don’t have to worry about her bathroom accidents, or worry about her falling in the night, or having a TIA and not being able to speak, or having a stroke, or ending up on hospice again, or wondering if the cancer will return, or if the caregivers will be there on a holiday, or having the constant interminable anticipated grief that drove me nuts. I don’t have to hear the endless reworking of the past, which I now rework on my own.

But it’s a mixed message I tell myself. The guilt is, of course, unwarranted. I can see that intellectually. But it’s still there, wrapped around relief and grief in a spinning orb in my brain.

It’s better each day.

But damn, I wish she was going to be here for Christmas. I would be so patient. I would be so accepting. I would serve her as I always did, but I would never roll my eyes at the endless demands, or grow impatient when she asked for a glass of wine, or whine to husband after she went home.

Of course, that’s a lie. I would still be impatient. I would still feel guilty. I would still feel tired. And, I would still love her.

Syncronicity

One of mom’s caregivers has a 19-year-old daughter who graduated from high school this past weekend. I was invited to her party because not only had R and I forged an unlikely friendship over the two years of her caregiving mom four nights a week, but I took her daughter’s senior photos last year.

When mom died, R was the one who saw the white owl the night before and thought it was an omen of her own death, until a cousin corrected her and said, “No, it’s just a message. Not to worry.” The next day she got the message that mom had died. She was with her the night before. “She was fine,” she said.

She was one of many people who saw mom in the two days after I saw her.

R was 14 when her daughter was born. Her husband was 15. Her dad helped them make a home. They were poor, uneducated, Hispanic. Down and out. But got married and raised their daughter. She had a son when she was 20. Her husband worked. Dad helped. But then dad got sick and when she was 24 she took him into her home and cared for him in his last weeks.

She then became a caregiver and worked for hospice. She went back to school and got her GED and is now entering nursing school next fall. I edited her application letter and essay.

She also wears spike heels and tight jeans, thick makeup and rats her long black hair. Without the connection of mom, however, our friendship would not have happened. There’s something about the caregiving relationship: the reliance the family feels on them, the bond that develops, that transcends education, clothing, lifestyle. If they are there for you in the most vulnerable of times, they could wear a purple mohawk and nose rings and it would hardly matter.

I went to the party thinking that because I didn’t know anyone I would take the graduation card, stay 45 minutes and leave. Three hours later R’s mother was hugging me, and R’s 81-year-old grandmother was waving goodbye  across the kitchen island (five generations at the party).

R introduced me to nearly all the 40 or so people who were there. Aunts and uncles and cousins and friends sitting around watching basketball or out on the deck having a great time.

“This is Sybil’s daughter,” she would say, proud to introduce me. Most lit with recognition, but if they didn’t she would say, “The woman I used to care for.” Everyone knew.

She walked with me to get a plate of food and sat with me while I ate. We talked about mom. We visited with her family and I watched as other young women with the highest heels, the shortest dresses, the most makeup and the most outrageous hair, walk in and make themselves at home. As was I.

She also introduced me to W. A few months before mom died R told me that her cousin and his girlfriend, W, were moving up from California and that W was a trained caregiver and needed a job. There had been drama around weekend caregivers after another long-time caregiver had to change her schedule. I hired her on the phone and was relieved when W arrived. The best part was that mom loved her. But I never met her in person.

And there she was at the party. We hugged. Later, instead of leaving when I thought I would, I sat down and talked to her. I asked her to tell me about her experience with mom. Over the next 30 minutes, she shared stories as if she had been with mom for many months, not just weeks. When she didn’t understand the routine, mom said, “Honey, I’m not mad at you, you’ll learn.” That was surprising. Mom used to get impatient with new caregivers, but she and W obviously had a connection.

I was a little shocked that mom called her honey, but it reassured me how much mom liked her. I had another family member, someone who knew and loved mom, who could share stories, see my tears and share her own.

She said she was in her apartment the morning mom died. “I went to get my paycheck about 9 a.m. [on the table where I left it] and I could hear her in the bathroom but I didn’t want to startle her, so I left.” Mom died about two hours later.

As I prepared to leave the party W said that when she read mom’s obituary she learned that they share the same birthday, April 26. Mom would have gotten a kick out of that, I thought.

I left the party feeling as if I had just left a family party. I’m not really sure I’ll return, but for that one night, they were family with a common bond, sharing stories about the woman we mutually loved. It felt good.

And on April 26, I’ll have someone to whom I can send a card. Synchronicity at work.

So many stories

Husband and I went to the dermatologist this morning for a checkup for his recent skin cancer surgery and for my yearly checkup to make sure things aren’t growing where they shouldn’t.

It’s also the same dermatologist we took mom to see several times earlier this year.

As we walked into the building the smell reminded me of mom. When we walked into the waiting room, elderly people sat waiting and it reminded me of mom. Needing to do more paperwork reminded me of mom because she always chafed at the paperwork.

We never had a very good time when mom had to see a doctor, but the dermatologist was especially trying. She had a squamous cell carcinoma the size of a large grape removed from her chest in January, one her doctor said not to worry about a year before. But it kept growing and it was uncomfortable and was in her way. Although many elderly opt out of certain invasive surgeries, you can’t just leave things to grow even though you think the person might die soon. It was completely healed when she died.

It was always an ordeal–the waiting room, the trips to the restroom, the complaints because she was uncomfortable…and then on the last visit she had an accident on the way to the examining room to have her stitches taken out. It was an awful moment for her, for me.

It’s in the remembering things like this that make me feel guilty, that I didn’t do it right, that I could have done it different.

Then a woman walked in with her mother. It reminded me of mom. The woman was old, but not as old as mom was when we last took her. She complained about paperwork she had to fill out. The daughter sat across from her while the mother filled out the papers, occasionally asking her daughter a question. The mother was abrupt. I picked up subtle resistance from the daughter. The mother said, “I have to go to the bathroom,” and got up by herself and went off to the bathroom, tapping her cane on the floor as she went.

“Looks like you have your work cut out for you,” I said, knowingly, to the daughter. She said, “Yes. Mom is 91, strong…and very spicy,” she said.

Ah yes, spicy. A good word to describe mom’s generation of women.

The  daughter said her mother grew up in Sunnyside, Washington, where she lived for more than 80 years, marrying and farming, and making a life. But then one day a decade ago the daughter says, “Mom, you and dad need to move to Ellensburg because I work full-time and I can’t be driving two hours to Sunnyside to check on you.” They moved north to Ellensburg and then a few years later her father died, and the mother has been alone since then, living in an assisted living facility, and with the local daughter the only caregiver because daughter #2 lives in Korea.

“I love her to pieces, but I couldn’t have her live with me,” daughter said.

I hear you, sister.

I told her to take care of herself. I said we rarely took trips while mom was alive but had taken a trip to Nova Scotia, even though mom started falling and had every sort of issue before we left.

“There’s so much guilt,” the daughter said. “We took a trip to Alaska with the kids and grand-kids this year. I told the staff at mom’s assisted living home that unless it was absolutely critical I’m not coming home. But every time we go anywhere, she falls and hurts herself.”

I told her that you think there’s going to be relief when they are gone, but then you are surprised to find it isn’t so. She said, “No, I don’t think I’ll feel relief.” We love our mothers, no matter what.

I asked her if her mother got along well in her assisted living facility. She said, “No, she doesn’t,” and sort of laughed. I sort of laughed, too, and wished her well as I walked back to the exam room.

In the exam room, the physician’s assistant commented on mom’s passing. “My father died when I was 17–a senior in high school. He had been very ill–mentally and physically. But I hate it when people say, ‘oh, they were so ill, now they are at peace,’ or, ‘they were so old and lived a long good life. No,” she said, “it’s still a loss.” Three months later, her grandmother died. “It was a bad year,” she said.

When I checked out, the lady at the desk commented on a ring I was wearing–a heart-shaped amethyst, my birth stone. I told her I bought it on mom’s birthday and she said, “I’m sorry about your mom.”

“Yes, thank you,” I said.

She told me then that her mother was still having a hard time with the death of her mother 11 months ago. The mother had lived to 96 and then had a stroke and said she was ready to go “home.” The family gathered, she said goodbye, and within a couple of days she was gone.

I said, “We didn’t get that ending, but mom passed peacefully in the end.”

She said it takes a long time for it to feel better.

It was a full experience, that hour at the dermatologist’s office. So many stories.

The warp to the weave

I read a few days ago in For Those Who Mourn that sorrow attends joy, the highs attends the lows. That’s not the way the author wrote it, but that’s what he meant. It’s the way it is. When you love someone and they are lost, a job is lost, a divorce occurs, it’s important and necessary and fully human to mourn.

But how can this be, I ask myself. How can I feel bereft after knowing for so many years that mom was ready and willing and that I was ready and willing. How can I be shocked that a person two months shy of 102 years old, could die so suddenly. Suddenly?

A few weeks before she died I wrote that I was ready to experience the grief and not just the anticipated grief. But I didn’t know. Not really. I thought I had been grieving for 15 years. Every time I was told she was going to die. Every time she had a stroke. When she was diagnosed with cancer and congestive heart failure. When a caregiver would find her comatose on the floor. I was prepared, dammit.

But I wasn’t. Are we ever prepared for grief? Or, is it simply ingrained in the fabric of life that we know instinctively how to grieve. If we are alive, we will experience loss and we will grieve. But it doesn’t feel instinctual. It feels hard. Like you’re expected to dance to a new tune you’ve never heard. It’s a different beat.

Or as one books says, “It is as though we leave forever a room where we have been comfortable and functioning well, and enter a new room. Some of the furnishings are there, and some of the same people, but the room is different nonetheless and requires a whole new adaptation from us, and probably, from the others in the room with us.” (Healing After Loss, Daily Meditations)

It’s an art, knowing how to grieve. “Don’t move on too quickly,” they say. “Allow time for the process and if you’ve lost a spouse, in particular, don’t make rash decisions.” “Give yourself permission to take as long as you need,” they say. But what does that mean?

When I lost my father, I was a baby. Mom moved on so quickly that within three months we were into a new life, in a new city, with a new “father.” She panicked and made rash decisions that had profound consequences. But she didn’t feel she could take the time to grieve. She had two children to raise and someone came along who said he would help her. So, jump ship.

We weren’t allowed to attend the funeral. Neither of us were given an opportunity to grieve, although I was told many times that “Brother remembered his father,…you were just a baby,” as if that somehow that made the loss of my father more tolerable. After I grew up I grieved for my father and in the last ten years, mom often talked about him, making me realize that she never fully grieved the loss.

When I was 15, my dear neighbor, Nelda, the one who invited me on their family vacations, had me babysit their children, and loved me, died of cancer. I didn’t visit her when she was dying. I couldn’t face it. I hid in the back seat of the car during her funeral.

When I was 18 a former girlfriend was murdered by a young sick priest. She was the only child of an older couple. How did they recover? I don’t know because I didn’t attend the funeral or ever talk to them. That same year my finance got another girl pregnant just months before our marriage. I buried my grief but wondered if her father was going to be present at our wedding.

When I was 20, my father-in-law died of a heart attack while skiing in Lake Tahoe, just weeks after he retired as a pharmacist. He was 46.  We took a PSA flight from San Diego to somewhere near Lake Tahoe and picked up a rental car. I do not remember anything else after that–not the funeral or the burial at Rosecrans Cemetery in San Diego. My SIL talks about the service and how we stood around his casket and held hands and talked about the “energy” flowing, but I have no memory of any of it.

No one counseled me or talked to me about grief. My young husband never cried, but simply took on the role of the oldest son while his mother came undone. MIL and my SIL took a trip to Europe for three months, and that helped us all find our equilibrium. But recently SIL told me that the trip was tedious and painful as they drove through Europe in a new Jaguar.

My Grannyma died when I was 24. I hadn’t seen her in a couple of years because I was too busy and  “I wanted to remember her the way she was.” Bottom line, I was tired of grieving. I avoided it.

But it’s not possible to avoid grief. It’s the warp to the weave.

The year before my Grannyma died I went off the birth control pill. Over the next couple of years, I learned that I was infertile. My FIL and doctor had assured me that 5 mg of birth control, taken for four years straight, would not be a problem. Now they give women .5 mg.

I’m not sure when I knew to grieve, but it started after a doctor told me I would need a fertility drug, which I refused. My husband and I divorced when I was 27, and a year later I learned that he was to have another child with another woman.

Sometimes it felt like it was too much to assimilate. But I knew that when mom died I would not numb out. I knew I would face it. I thought, in fact, that it would be straightforward. But I was shocked to discover how empty it feels without her, that I would so miss her presence, her words, her touch, her irritating and excruciating needs, the pain of watching her pain, the wait, the interminable wait for her to make her transition.

Yesterday I knew I couldn’t stay in the house trying to organize my desk that looks like several small explosions went off. I didn’t want to garden, or write, or photograph anything. I told Ben I was going to ride along while he went to paint a fence for a client (also a friend). The sprayer didn’t work, so I hand painted part of the fence while he fixed a latch and we talked with our friends and admired her garden.

From there we drove out into the valley to visit another prospective client. I stood outside the truck with our dog in the quiet spring air in the client’s apple orchard while Ben measured windows. I remembered when mom once worried about “all the trees are being cut down,” and I took her for a drive into this valley, called the Lower Valley, a broad expanse of Yakama Indian Reservation, upon which farmers and orchardists grow everything, including millions of trees. She was surprised and heartened by the view of all the trees, rolling hills and valley floor covered in trees.

After we returned home, Ben and I worked in the garden for a while and our neighbor friend came over and leaned over the fence and invited us for soup and homemade rolls and salad with her and her mom, who is visiting from Texas, and three of her children. It was a fine finish to the day.

I find ways to find joy in the midst of grief, which is really exactly what it’s all about. I didn’t know how to do it before, but mom gave me plenty of time to learn.

I don’t know who wants to read about the story of grief in one woman’s life. But isn’t it the story of all or our lives? Sometimes it feels like the protagonist of this story is gone. But not really. It is I.

Shared experience

I’ve been puzzling over my sense of aloneness. People have been more than kind. Cards have arrived, even from mom’s former oncologist who hadn’t seen her in five years. I also understand that grief is a solitary endeavor, that no one can truly enter into another person’s loss. Even among family members, there’s a multitude of perspectives.

I was also feeling inexplicably anxious about my brother and sister-in-law coming in two days. There are the obvious reasons–they will be seeing mom’s things for the first time in my house, we will decide who wants what and do a memorial on Saturday, all of which is enough to make anyone anxious. But it was more than all of that.

It was the sense that I am on the outside of the grieving process that my brother and sister-in-law are sharing together. It’s supposed to be this way. There’s nothing wrong, but I felt left out, confused and anxious.

And then, through a conversation with a friend about my discombobulated thoughts, I had an aha.

When my father died I was a baby and my brother was six. He remembered our father. They used to throw the baseball around. They ran the train under the Christmas tree. There was relationship beyond babyhood, which is where I lived when my father died. My brother’s grief was real and palpable, something to which my mother could attend. I was just a baby, apparently with “no memory.”

When I became a midwife, I encouraged my clients to acknowledge a baby’s ability to hear, process, and understand on some level, to not assume that they are unable to comprehend. When a child has lost a parent, no matter the age, it is important to acknowledge that loss.

We were not allowed to attend the funeral and my stepfather was determined to erase the memory of our father. He was never mentioned. We moved in with a man who was the exact opposite of a loving father and my brother’s awareness of that was more acute than mine in the beginning. Mom attended to my brother’s grief because he “remembered.” I have memories of her saying that. They had a shared experience that I could not enter.

Mom was not aware of my grief until I described it to her as an adult, when I finally understood that I had been living with buried grief my entire life. I, too, had lost a loving father who was replaced by a predator.

As I revisited those childhood feelings of being left out of their shared experience, my mind cleared. It was as if my right-brain processing was given a boost to the left. As in most cases, the process today is informed by the process in the past. I was alone then. I am not alone now. My brother wasn’t responsible then to share the grief. My mother was. Now that she is gone? He is still not responsible.

But talking to him, sharing my grief with him now, even in small ways, is helpful. I’m no longer a baby, just someone grieving a loss, complicated in part by past losses. But simpler now. I’m not anxious about their visit, but looking forward to a shared experience.

Tears like rain

I went into the garden this morning with my smoothie and my dog and sat on my new cedar bench on the north side of the garden and felt the cold and wind and sun on my face. I surveyed the garden, the new rock fire pit, the row of flat rocks I laid next to a bed where I’ll plant alyssum to provide a snowy border to my onions or whatever companion vegetable works well with alyssum.

Then I said, “What next. What do I do next, to find my place, to walk in this world without my mother?” Her care so consumed my thinking and my life that even though I lived my life, there was always the feeling of being in limbo, not knowing what would be next when it was over.

The phone is quiet. It’s almost eerie. Friends call, but not a lot. My brother and sister-in-law arrive Wednesday. Son will come Saturday for mom’s memorial and friends will come celebrate with us. Sunday my brother and sister-in-law will go home. I’ll have one more visit from a family member and then life will go on without mom and I’ll make my peace with it and figure out who I am in the process.

I will also have to start thinking about a new blog since I can write about taking care of mom and grieving for only so long. Grief plays out and most people forget that you are even grieving because in public it becomes easy to pretend that the empty space in your life doesn’t exist.

Now, grief erupts unexpectedly like a summer thunder storm, the rain coming quickly, and then the sky clearing. Thursday we went to Seattle and on the way home we stopped at a Starbucks and I sat facing all the people in the coffee shop and DH and I began to talk about mom and I began to cry, sometimes sobbing quietly with my face in my hands.

But there will reach a point where the grief will simply be held quietly in my heart, touched occasionally by a memory, a thought, perhaps triggering a light summer rain, the kind when rain falls from the sky and there are no clouds, and you look up in wonder.