Forgiveness

The word forgiveness can evoke a variety of emotions. Fortunately, through the years I have discovered authors, Anne Lamott among them, who write about forgiveness in the vein that it is something a person does quietly for themselves. It's not something you say to someone else ~ it is introspective, personal, and something that has been hard for me to name and define for most of my life. 

I have practiced the intention of forgiveness for many years without calling it forgiveness. I forget that until I run across something written or work through what I'm struggling with until the "aha" moment when I think, "Wait, that's forgiveness," which is what happened this past week when I found a saying on an undated slip of paper in a drawer.

"Forgiveness is giving up the hope that the past could have been any different." It gave me chills. I had to google the saying to see who to credit with the wisdom ~ Oprah's name is attached to it. 

I had been struggling with something for days, tearing up at night when sleep wouldn't come. When I found the slip of paper, so many things fell into place, retroactively and in the present....

So I pulled out a journal I started 25 years ago. It's called a Journal of Gratitude and has a place to write a few lines under each day of the year. I use it to record quotes that have meaning for me, words of wisdom from movies and television shows and books and people I know. Last week I wrote this definition of forgiveness under the date December 6. 

That's the date my father died in 1996 from a sudden, fatal heart attack. My mom found him when she returned to the house to have coffee and talk with him; she had finally moved out that summer when he slapped her for the last time. Ten years earlier I had written my father a three-page letter informing him of my boundaries as far as he was concerned. It boiled down to three things: he could visit my home but he could not argue with my mom or hit her when he visited; he could not raise his voice to me or my children; he was no longer allowed to smoke in my house. With the help of an excellent therapist I had given up the hope that the past could have been any different with my father. I set aside his past behaviors and set forth the parameters for future expectations in my home and in the presence of my family. He chose not to visit for ten years, and when he did come to the state he did not stay at my house. I didn't engage when he talked about the past or justified his behavior. 

In 1986 and 1996 I didn't call my action "forgiveness." That would have sounded uppity to me, like I was somehow superior. That's not how I felt. Instead I felt like I had surrendered. I remember feeling desperate to do something to save my mental health, and this was all that was left. I knew what I had decided would impact my relationship with my mom.

And it did. She could not comprehend what I was doing. She did not understand what I was doing to protect my children. Again, with the help of my excellent therapist, I came to understand that my mom had not protected me and my siblings from my father, which my therapist explained was the job of a parent. I fought that idea tooth and nail for weeks, but I had to connect my anxiety and panic attacks to the kind of mother I was, a mother who was not a mother like my mother was. To get healthy and be there for my children I had to be a different kind of mother, and to me that meant that I had to admit that my mother did not take care of me. I did not say that to my mom; for decades I talked around that by explaining that it was what I had to do to take care of myself and my family.

Through the decades after my father died my mom and I worked through the process of letting go of what we couldn't change from all those years ago. In 2007 she had a stroke and sometime around then was diagnosed with atrial fibrillation. She had remarried in 2003, moved to West Virginia, and stayed busy with him and part-time work. After the stroke it took years to find the best medication and get the correct dosage regulated. With the health issues she had started feeling anxious. She shared with me that she never understood what I was going through all those years ago, and that was an opening for us to talk more honestly about a range of experiences and feelings. She didn't hide her anxiety from me, and I was able to share the strategies I used to cope then and now. Those conversations added a new dimension to our relationship. We continued to talk honestly with each other right up until she died.

Within my sorrow in the last year has been a deep sadness that my mom had not been happier in her adult life. I do miss her - the cards she sent, our phone calls, and the sporadic in-person visits. My sadness was about more than that; as I've looked through photos of her with family and friends in her first 18 years I see a girl who is loved grow into a young woman who laughs with friends and enjoys experiences with family. She graduated from high school, got a good job with the federal government, and shared an apartment with a friend. 

As I have written posts this month and started putting my mom's photos in order, that sorrow has been front and center. What I realized this week is that where my mom is concerned I had given up the hope that many things in our past could have been any different. However, deep within my grief and below my consciousness I have been mourning the life she lost when she started the life with my father. Once that realization rose to the surface I considered what that means, what I could do to relieve the pain I have been feeling. Then I found the slip of paper ~ forgiveness is giving up the hope that the past could have been any different.  

Can I forgive my mom for staying with my father for 41 years? I am getting there.

The journey continues....

Make The Trip

Last Saturday I took a trip to central Massachusetts. I had been preparing for weeks to drive 200 miles to the small town of Turners Falls, and I decided that the predicted heavy rain would not keep me from going. It took an hour longer than it was supposed to, and I felt a sense of accomplishment when I arrived. The purpose for the trip was to donate fabric, satin binding, yarn, and pattern books that were new and usable, things I had had for years or had inherited and hadn't used. There is a small shop in this small town that is making a name for itself in that it offers sewing/craft materials that will benefit from finding homes with people who will use what others have donated. They also offer classes and opportunities to gather for sewing, knitting, and crafting. The place is not on my way to anywhere but it was worth the trip.

From Turners Falls I headed to the Boston area to catch up with my sons and their families for Fathers Day. My sons are a pleasure to watch with their kids. I could not be more proud of them.

I decided years ago that when I got the idea to go somewhere I should go. I love to drive. I love to travel. If I make plans, and I am able, I follow through. 

Sometimes things happen beyond my control. Then I wish I had made the trip earlier, which often wasn't an option, but I feel sorry still. 

In early 2022 I made plans to travel to West Virginia in the summer to see my mom. My younger son and his family were also planning a trip to visit. In fact, from the hospital I talked to them about moving their trip to later in the summer until Grandma Ellie was settled in a rehab facility. The last time we'd visited was 2019, and we had scheduled different weeks to go to spread out the socializing for my mom. I have wonderful photos from those visits and am so glad we went when we did. The pandemic put off travel for the next two summers but last year we felt secure enough to plan the visits. Best laid plans....

I have been thinking this week about two other times my family has lost someone important to us, just as we were planning a visit. In 1982 Ken and I and the kids were going to Maryland for Thanksgiving. Ken has a large family and we were looking forward to seeing everyone. Just a few days before we were due to leave we got the call that Ken's mom had had a sudden fatal heart attack. We were devastated. Of course we all gathered but that day and all the gatherings after that felt the loss of Grammy. 

Just three years later we lost one of the most important people in our lives, a dear friend of Ken's family for decades, the man who started as a neighbor and became a mentor and friend to 12 year-old Ken who introduced him to travel, specifically to the state of Maine. We couldn't have been closer to Linwood if he had been a blood relative. When we moved to Maine we chose to live in the city where he had a home and started a business when he retired. We still talk about how glad we are that we had the years we did with Linwood. We spent holidays and birthdays with him and ordinary days in between. In 1985 I was home with my 6 year-old daughter and 3 year-old son, getting ready for Christmas and waiting for Ken to get home from work; it was Christmas Eve and we had plans for dinner at Linwood's. The call came that Linwood was with friends when he had a heart attack and died before anything could be done. We cried for days. All these years later we remember fondly our times with Linwood and share stories with our kids and grandkids.

The lesson for me through the years has been to take the trip, make the visit, and listen to the inner voice that says, "Go." I've never been sorry I listened.

The Thread

My daughter shared a poem "The Thread" with me several years ago, handwritten on a light pink piece of cardstock. I set it up my desk, on one side by the calendar and then the other by the pencils. I stick it in books I'm reading so I will come across it at random. This week I found it in the back of my day planner. I have read it many times over the years, and each time the meaning I find reflects what is happening in my life at that moment. Today the idea of the thread as grief occurred to me. The loose thread is a garment of grief that has unraveled and is slowly taking new shape as something different. A thought to ponder....  

Something is very gently,
invisibly, silently,
pulling at me-a thread
or net of threads
finer than cobweb and as
elastic. I haven’t tried
the strength of it. No barbed hook
pierced and tore me. Was it
not long ago this thread
began to draw me? Or
way back? Was I
born with its knot about my
neck, a bridle? Not fear
but a stirring
of wonder makes me
catch my breath when I feel
the tug of it when I thought
it had loosened itself and gone.

Denise Levertov (1923-1997)

From: The Collected Poems of Denise Levertov

Heavy

Going along and going along...and then wham. Today I was tired and my back was sore. Mid-morning I couldn't be up any longer, so I laid down on my bed just for a moment. I fell asleep for an hour. I can't remember the last time I laid down during the day without being sick. I only do that when there isn't anything else I can do. And today was one of those days.

I've been meaning to look through the books I have of Mary Oliver's poetry because the perfect one always shows itself. Tonight was no exception.

Heavy

by Mary Oliver

That time
I thought I could not
go any closer to grief
without dying

I went closer,

and I did not die.

Surely God

had His hand in this,

as well as friends.

Still, I was bent,

and my laughter,

as the poet said,

was nowhere to be found.

Then said my friend Daniel

(brave even among lions),

"It's not the weight you carry

but how you carry it--

books, bricks, grief--

it's all in the way

you embrace it, balance it, carry it

when you cannot, and would not,

put it down."

So I went practicing.

Have you noticed?

Have you heard

the laughter

that comes, now and again,

out of my startled mouth?

How I linger

to admire, admire, admire

the things of this world

that are kind, and maybe

also troubled--

roses in the wind,

the sea geese on the steep waves,

a love

to which there is no reply?

Scrapbooks, Photo Albums, and Memories

* In 2008 and 2009 I wrote posts for a collaborative blog called "50-something moms blog." The blog as it was cannot be found online, but I found a link to one of my posts in an early post here and the link still works. I never set up a category on my sidebar, I don't know why, so they are not readily found on this site. I did save copies of what I wrote in a  folder on my desktop - though why I thought of that I don't remember. Anyway, I am going to post them here when there is a topic that fits what I am writing about. This is my first attempt at making this work. I will make note when I get to the post I wrote all those years ago*

Yesterday I sat down on the floor and went through the envelopes, albums, and boxes of photos I brought back from my mom's house. I have been through them a dozen times in the past year, pulling out photos to share with siblings and getting those sent off. I have pulled out photos with no names and/or dates if I cannot identify the subjects, and there were dozens and dozens of those. There is no sense in perpetuating the handing down of photos that have meaning for no one. If I want to save photos to pass down, they have to be organized and readily accessible. What the kids do with them after I am gone is up to them, but I want to give them the option to keep or throw.

I wound up with the bulk of the photos because my siblings do not want them. Years ago my mom shipped me all my dad's slides, thousands of slides with some in slide holders that fit in a slide projector that would no longer move through the slides, which she had also shipped to me. Three years ago Ken and I spent long summer nights going through box after box of slides; I would pass him a slide and he would fit it into the projector so we could see it on a wall in the living room. Hours and hours over the course of several days we went through every box of slides, setting aside ones of my family. There were also hundreds of slides taken on my dad's work trips and of people I did not know. Then we pieced together a chronological order based on the dates on some slides and comparing to photos I have in albums from those years long ago. Then I sent the slides off to a company that scanned them, in the order I sent them which was a huge bonus, on a CD and made multiple copies that I shared with family members. My mom loved having all of those photos in one place and rotated the photos as the background on her computer. That alone made it worth the time and effort it took to accomplish the task.

I come from a long line of photographers on my dad's side so there are lots of photos of family get togethers at my great-grandmother's home in Toledo, Ohio in the summers of the 1960's. I started taking photos with my own camera when I was still in elementary school. I labeled and dated photos and put them in an album, grateful now that I started that habit young.

On my mom's side of the family there are formal portraits in sepia tones of her ancestors, taken either in a studio or when a photographer came to the house. Her generation and the generation before her were generous with their picture-taking, so there are many photos of her, her family, and her friends through the years. Most of those are dated so I can piece together a timeline even for the ones that are not specifically labeled.

When my brother started making trips to my mom's trailer last summer to try to make sense of what was there and all that needed to be handled, he commented to me that, "There are so many photos!" I told him that I had been sending Mom photos for over 40 years. When my kids were young and I had a 35 mm camera, I would send off a roll of film and get double prints so I had photos to share with my mom and Ken's family. The sharing of photos continued through my life with grandkids and right up until my mom's death. My family is well documented.

Maybe some of what I just wrote will be repeated in my post from January 2009, but I don't want to edit what I wrote then because I'd like to save it as I wrote it.

*Posted on the 50-something moms blog January 6, 2009:

I have a scrapbook that my mother started for me when I was a young child.  It holds birthday cards, photos of my friends from kindergarten, letters from relatives and friends, and my first library card.  This scrapbook has survived a life on various closet shelves and numerous moves, one of the few things that remain from a childhood that started in the mid 1950s.  It means a lot to me.

 
I have a photo album that I started when I got my first camera, over 40 years ago.  The square, black and white photos that fill the first pages hold memories of early friends and Christmas celebrations.  I  have photos from when I graduated to color film and a photographic record of when I had my hair done for my first prom.  These photos provide a priceless component in the historical record of my life.  It was fitting that I would want my children to have a comparable record of their childhoods.

   
The tradition started with baby books for each one of my children.  The overflow of cards and photos needed a home, which led to the start of a scrapbook for each child.  As they got older, my children selected the photos they liked and decided what mementos they wanted to save.  Their scrapbooks are filled with birthday and vacation photos, cards, awards, postcards, and graduation programs.  A scrapbook is the perfect reminder when a child is tempted to say, "I never went anywhere."  Oh, we went places and there is physical evidence to prove it.

Our family photo albums serve as an archive of people, places, and events that we have known and enjoyed.  The photos remind us of where we've been and who we've known. They serve as a resource  when we try to remember when we traveled to Memphis or who attended Grandma's wedding.  My children love to show off the family photo albums when a friend visits and expresses interest.  Some photos are good for a laugh.  Others elicit oohs and aahs as the pages are turned.

I sometimes wonder if my grown children appreciate the memories that have accumulated over the years.  Then one of them will ask, "Mom, is there room for these ticket stubs in my scrapbook?"  I smile and respond in the affirmative.  For all their digital photos and computer files, my children still appreciate a scrapbook they can hold open on their lap to remind them of the special events in their life.  For all that my children no longer need me to do, I can still track the passage of time and keep the family archives for the sake of history and the generation to come.

Memory Boxes

In May, on our return trip from Philadelphia, my daughter and granddaughter and I stopped over at my older son's house to stay Saturday night with his family. Sunday morning my younger son and his wife and son came over for breakfast. We were all together, and I had something to share with each of my children: a memory box. In April I decided I wanted to do something concrete sooner rather than later, in addition to a family gathering later this summer. The Sunday before Mothers' Day, when we were all going to be together, seemed like the perfect time.

I had bought three decorative boxes about the size of shoe boxes. I had set aside two or three cards that I found among my mom's papers that each of my kids had sent their grandmother. I started filling each box with those cards and the small album I had created for her of each of her great-grandchildren in their baby & toddler years. From her stash of photos I selected a half dozen photos of her as a child and young woman for each of them, as well as a few photos of her with each of them when they were babies and teen-agers; I made small albums for those photos and attached on the last page a copy of the notice of her death I submitted to her local paper last August. Also in the box I placed a solar collector in the shape of a butterfly for their garden. The finishing touch was a small two-inch hoop with a piece of lace from her wedding gown and tied on top with a pink ribbon to hang in a window or as an ornament. 

The creation of the boxes was a process that I could not complete all at once. I set aside the cards one day. Another day I went through photos, and it took a few times through over a course of days because it was emotional for me. I had seen all the photos many times, even several times over the last year, but I hadn't looked at her life from age 5 to age 20 all at once. She was beautiful with the most wonderful smile, truly happy. I wished I had known her then; I wished she had been that happy when she was my mom. I was glad to have photos of her with my kids because they didn't see her often for a variety of reasons; when the kids were old enough to say what was true they coined the phrase "fly-by visit from Grandma" because she would come for a visit and in a couple days she'd be gone. I was glad there was a record of some of the time they had with her.

It was meaningful for me to give the  memory boxes. My children listened to my explanation of each item. We had time to talk a bit about what they remembered. Now the memories in each box may sit on a shelf for a while, and that's okay because what mattered to me was the giving of the opportunity to remember.

And I still have lots of photos to finish sorting, organizing, and preserving for future generations.

The journey continues.... 

Living and Dying

 A designer, an organizer, and a psychologist walk into a house....

No, this is not a joke. This is the basis for a new show on the Peacock channel [streaming for a fee which is well worth the money] called "The Gentle Art of Swedish Death Cleaning." What in the world?! It is narrated by Amy Poehler, which just added to the questions I had. I watched the preview and was intrigued. If nothing else, I wanted to know more about it so I started watching. 

I have now watched each of the eight shows at least twice. Real stories with real people, all in Kansas City in these episodes, that have in some way dealt with death. Each situation is different. There are tears and laughter and poignant moments that touch me every time.

This is not a show about death. It is a show about living, how to continue living when you lose someone close to you and/or how you make room for living in a cluttered life. 

I have to admit that I was also in a place to receive the wisdom of this show in April. It was a comfort to see people working through a really tough time with the gentle, which is a key word in their practice, help of three professionals trained for just this situation, a time of being stuck and in desperate need of someone(s) who knows what they are doing. These three Death Cleaners are all about life, and they make it clear that it is not their job to make anyone get rid of their stuff. Just the opposite. They see their mission as helping people find their own way beyond the place where they find themselves.

So many of the stories spoke to me about what I've been doing in the past year ~ cleaning out my mom's trailer and storage unit; bringing home the things that have meaning for me and integrating them into my household so they are in use; clearing out the things in my house that no longer serve a purpose for me or my husband; and organizing what I keep so I can find things when I want them. Truthfully I have been working at most of this for two years, and it was easy to get rid of things in the back of the closets or buried in boxes that haven't seen the light for years. It gets harder to pare down what you don't use or don't really like but hold onto for sentimental value. 

After my mom's death it was time to get down to the nitty gritty. The bottom line is that I will not leave a mess for my children to go through and clear out.

That is some of what "The Gentle Art of Swedish Death Cleaning" is about, thinking about what you will leave behind. It is also about what has been left to you, how you feel about that, and what to do about that after you are aware of/process those feelings. 

The three Death Cleaners are gentle and honest, good listeners while able to get to the heart of the matter with compassion and humor.

One aspect of the show that caught me off guard is the element of celebration of the person who has died. I feel emotional now just thinking about it. I realized that I had not celebrated my mom's life. 

In WV before and after my mom's death I was with one or two siblings but never with all three at the same time. We were all coming from away, and we all had commitments. My older brother made two round trips to/from eastern Virginia. My sister traveled across an ocean. My younger brother drove into a terrible storm in a car he wasn't sure would make the trip in the first place. There wasn't anything that any of us could do once our mom was is hospice. We said our good-byes when my older brother left for home and work, and I didn't expect to see him again; his plate was full with the legal and financial obligations in his role as executor.

There was no time to plan any part of what happened after my mom fell. It was all unexpected and things happened too quickly. All we could do was react.

So we didn't have the time together to celebrate our mom's life. At the time I talked about finding a way to gather in the summer of 2023, in eastern Virginia, where my mom talked about wanting to live. I had the idea of putting a bench in a park or garden and inviting family and friends to gather with us to remember Ellie. Last June there was no interest from the others in planning anything, which I understood because a year seemed a long way off. My kids liked the idea and were talking about planning some vacation time so they could make the trip to Virginia.

So in January this year I mentioned it again to my brother so family and friends could begin to make plans. He is not interested in that idea. Then I mentioned that I want to do something in Maine with my kids and grandkids in my own yard with flowers and a granite stone. He said to let him know and maybe he will make the trip north....

There is an episode about the topic of celebration, and I cry each time I watch it. The person was caught up in the immediacy of what was happening; and on top of that they were dealing with their own health crisis. It didn't occur to them that they hadn't taken time to celebrate...because really, who thinks of a celebration while you are in the midst of grief.

The Swedish Death Cleaners think about that and so many other important aspects of living and dying. I am grateful that they've found a way to share their wisdom with the world.  

The Final Family Piece Falls In Place

June 10 of last year was my 13th day in Morgantown, WV. It was the first time I would see my younger brother in twelve years, not since my older son's wedding in Boston. That was the last time all of us had been together. I am grateful we took advantage of the photographer's set-up for family photos ~ we enjoyed the time together that weekend and it shows.

It was only big events that brought us together once my mom married Charlie and moved to WV in 2003. We all made it to their wedding, another happy event as everyone there was glad for them. I was especially glad to see my mom happy. They lived in a small town in the mountains of eastern WV, not an easy place to get to from any direction. From my house it is a 15 hour trip, whether I drive or fly into a city that is still 3 hours away. There was no room for guests in their small trailer, which meant a stay in a run-down motel down the road. It was much easier for us to get together when she lived in Maryland, just outside D.C.

So I was glad my brother made the trip. I wanted to talk to him to see how he was doing. He has had serious health challenges and all I knew I had heard second-hand. It was good to hear his voice. We all sat and talked for a long time.

My sister decided to stay through the weekend because my brother and his partner were staying. She could stay in their room. I was leaving for Pennsylvania. I needed a solid night's sleep in a good bed and time to rest. I had one clean change of clothes and new socks and underwear from Target. 

It was bittersweet to say good-bye. I was glad I had had time with my brothers and sister. I didn't know when I would see them again. At the same time I felt okay about leaving. I had done what I had came to do, and while the outcome was not what I wanted, I had done all I could do.

I was 250 miles from the hotel in central Pennsylvania, an easy trip all things considered. My friend was driving an hour from her home Saturday morning and would stay the night at the hotel. We would have a good old-fashioned sleepover. I hoped she remembered the wine.   

The Day After

Often the day after someone dies there are things that have to be decided and arrangements that have to be made for a funeral or memorial service, visiting hours or a gathering of sorts, burial or provision for ashes, and a reception. One year ago on this date my siblings and I did not have any of those responsibilities because Mom had donated her body to the medical school; they took care of every single arrangement. In 18-24 months they will send her ashes to my brother. Then he can decide what to do.

I helped with calls where I could. My brother was executor and had access to all the accounts, so he needed to make the bulk of contacts. I did make calls to a small group of people to share the news and left a message for my younger brother. I talked to my mom's friend who offered to continue taking in the mail and watering the plants. When someone had information to share or offered to help, I said yes. My feeling was that it was important to let people help in ways they could. We didn't need to do everything ourselves.

Mid-morning my older son called. My kids had talked about how the next week might play out. I told him I was going to make my stopover somewhere in Pennsylvania like I had on my trip down to WV. He offered to fly to meet me and drive with me back to his house in the Boston area. I was touched that my kids had considered what the next days would hold and how they could help. I thanked him and said I had plans to catch up with my friend on the weekend, the one person outside of family that I had spoken with every day since the day my mom fell. We have been friends since junior high school and made our way together through everything life has thrown at us. My son understood and said to let him know if I wanted to stop in Boston on my way home. We would talk next week about Fathers' Day weekend.

My sister spent some time figuring out the best way to schedule her trip home to Scotland. It was complicated. We were both exhausted and needed to get to bed early. Anything left to do could be done on Friday.

We were all but tucked in when my phone rang at 10:00. It was my younger brother. He was at the hospital. It took me a moment to collect myself and consider my words before I told him Mom had died. He said they knew and were determined to finish the trip regardless. They ran into last night's storm and had to stop in Maryland to stay the night. They could find directions to the hospital but didn't know where we were staying, and they wanted me to come so they could follow me to the hotel.

On our way out the door, my sister and I stopped at the desk to get them a room. Then we headed out into the night and back to the place we thought we had left for good. We found their car out front, glad to see them and sad about the circumstances. There was a tearful reunion and a brief summary of what had happened in the last 2 days. We planned to meet in the morning for breakfast.

I have thought a lot about how differently each of my siblings and I dealt with my mom's hospitalization, death, and what came after. There is no right or wrong way. I think what matters is that we have been respectful of each other and what we each needed to do. That hasn't always been easy for me, but in each instance I come back to the fact that I am responsible for myself...only me. 

I am obviously still working through my grief, which doesn't move in a straight line or at the rate that I want. My back still hurts, and today my massage therapist worked out the kinks in a major way.

The journey continues....

The Final Day

One year ago today the day started just after midnight when my sister and I got back to the hotel. My brother's son and his wife had arrived; they had called ahead to reserve a room and had driven the four hours from home after work. My brother had been in touch with his youngest son, much like I kept in touch with my kids, with daily texts and phone calls. We said our hellos and enjoyed light conversation for a bit; then my sister and I needed to get to bed. She had been up more than 24 hours and I had plans to officially start the day at 6 a.m.

Before I left the hospital late the night of June 7th I stopped at the nurse's station to ask if I could come before visiting hours the next morning. I was given permission and the same nurses would be on duty the next morning to answer the call from the visitor desk. I knew that the day would be busy with making arrangements for what came next for my mom. She was only allowed two visitors at a time so we would play change-the-nametag game throughout the day. I wanted a chance to talk to my mom alone in the calm of early morning, and I didn't know if I would get another chance.

When I arrived at 7 a.m. the parking lot was nearly empty at the large university hospital. The front desk called up to the SICU and I was given a name tag and permission to go upstairs. It was a relief to see my mom awake and looking like herself. She was still on oxygen and pain meds, but the other machines had been removed. I told her that her grandson had arrived with his wife and they would be over to visit. She smiled. We talked about my kids and grandkids, and she said that all her children and our families were her legacy. I reminded her that I had talked to my younger brother the night before and that he was on his way. Throughout the day she said more than once, "You know I love him." We all knew she loved all of us, but it was good to have her say it out loud about my brother who hadn't talked to our mom in months and hadn't yet arrived. Her mind was as sharp as ever. She talked about things that happened when she was a child, how much she loved her grandmother and aunt who took care of her after her mother died, and how she always felt loved and taken care of. My mom had regrets about how much responsibility fell to me as the oldest child; we talked about how hard life was in our household and how we survived. She was proud of the four of us, the lives we had made for ourselves, and the people we had made a part of our lives. It was one of the best conversations I had ever had with my mom.

Then it was visiting hours. I got the call to come downstairs so two others could come upstairs. I told Mom I would see her a bit later and the nametag rotation began. It gave me a chance to sit outside and catch up with my nephew and his wife. I told them how much it meant that they came. The suspicion I had about their trip was accurate: yes, they wanted to see Grandma Ellie, and they also wanted to check on my brother. They knew he was taking all of this very hard. It was important they were present to support him.

Around 11:00 we got word that Dr. Navia and  his team were prepared to meet with Mom and then with my brother, sister, and me. It had been cleared that the three of us could be on the floor at the same time to meet in the waiting room. It was a very difficult meeting, especially for my sister. She had been in town for only 12 hours and she was hearing that our mom was ready to die. My brother and I had been witness to what Mom endured and how hard she tried to keep going. She couldn't do that any longer and she was ready to let go. We were each asked to voice our support for our mom's decision to enter hospice care. Then the Support Team went into action to have her moved to the hospice floor.

The day before my mom, my brother, and I had met with a social worker to go through the assignment of my brother as Mom's representative if she was unable to make health care decisions for herself. I was designated to step in if necessary. It was never necessary to have anyone but my mom make decisions.

The other thing the social worker was able to accomplish the day before was to track down the paperwork my mom had signed several years before to have her body donated to the medical school at WVU, on the very campus where she was hospitalized. She and the man she married in 2003 had set that up; Charlie, who died four years earlier, was from West Virginia and they both liked the idea of being of use in the training of medical students. The problem had been that my mom's wallet with the donor card had been lost between the ambulance ride to her local hospital and the trip to Morgantown. My brother had tried unsuccessfully to talk to the right person to find the document on file; the social worker was able to straighten that situation out with one phone call. 

After the meeting with the Support Team, I went to get lunch, and my brother and sister went to be with my mom. She was moved to the hospice floor in the early afternoon, to a small room at the end of the hall. She was on oxygen and a small dose of morphine. That was all. There was not a light to be seen or a beep to be heard.

I went into the hall to call my younger brother with an update. I had not heard from him since he told me he was coming. There was a storm headed across the state and we didn't know how that would impact travel. I left a message.

Mom was settled in and resting. I called people to let them know. I left my number on the board in her room so the nurse could call if anything changed. I could call the nurses' station any time.

My sister and I were staying in town. In the evening my brother headed across the mountain to try to beat the storm, and my nephew headed home as well. We would stay in touch.

Later that night the storm hit with full force - thunder, lightening, wind, heavy rain, hail, and tornadoes. We learned the next day that there was a swath of damage and power outages across the state. 

At 11:40 my brother texted that he had made it home despite the terrible weather. Shortly after there was a tremendous flash of lightening out our hotel window, and the cable went out. My sister and I looked at each other in awe at the sight of the storm outside. 

I am convinced that that was the moment that my mom passed. I love the image of her riding out on a lightening bolt. She "knew" that my brother was home safe and it was okay to go.

My phone rang at 4:30 a.m. It was the charge nurse with news that my mother had died. She had called my brother but he didn't answer. It was not the kind of news you leave in a voicemail. She was delayed in calling because there were downed trees blocking her route to work. They were calling the time of death just after midnight because that was when Mom was found to be unresponsive. However, I count June 8 as her final day.

Then I called my brother. We would talk later in the light of day.

Decisions

 I am not a morning person. I never have been. People told me when I had kids that would change. It didn't. They are night owls too, not early birds.

I do wake up early if I need to or if there is a lot going on, and my days in West Virginia fit that description. I was constrained by the hospital's visiting hours as to when I could arrive, but the morning of June 7 I called the nurse's station at 6. I wanted to know how my mom's night was and if they had yet set a time for the meeting with the Support Team. One of Mom's favorite nurses was on duty and said she had  a restless night; the Support Team would be called once we arrived and come to the SICU for the meeting.

We were all on pins and needles. We didn't know what to expect. My brother and I thankfully were able to get through the visitors' line and to the room shortly after 8. We reassured our mom that she was heard and the process was moving forward. On rounds the doctor in charge for the week talked as if meds and treatments would continue as they had been. I know the doctors are busy and have many patients, but was there no communication about all that happened after rounds the day before? My mom had to tell her that we were meeting with the Support Team. Confusion. Lack of communication. And we didn't know the extent of it yet.

The waiting was hard. My brother and I were tired and anxious, yet we remained calm and supportive for Mom. My sister wouldn't arrive until late that night; she was already in transit for her 22-hour trip. She knew what was planned for the day but she wouldn't get an update until she arrived in WV.  

Two hours after we arrived at the hospital the Support Team came to the room to talk with my mom. While my brother and I were waiting in a quiet corner outside the room, his phone rang. It was the orthopedic surgeon calling to discuss the details of the surgery scheduled for the next day to deal with the infection in Mom's hip. He was on speaker phone and in unison my brother and I said, "No. The Support Team is meeting with her now. There will be no more surgeries." I was incredulous. 

There apparently was no communication among the specialists who were taking care of my mom. I thought the hospital doctors were there to keep this confusion to a minimum. What do patients do that have no one there to speak for them? How do patients who are in dire circumstances get the care they need if they can't coordinate the information coming at them? We wouldn't have even known about the Support Team if Cass hadn't mentioned it.

Minutes later Dr. Navia emerged from the room to address my brother and me. I am using his name because he was the answer to my prayers, the doctor who put all the information together and the first doctor to tell my mom, my brother, and me the whole truth. He said, "Ellie is very sick. She is dying." We said we knew that. He said, "No, I mean she is dying now. Her white blood cell count is very high and there is nothing that will change that." We were speechless. Had he just told our mom? Yes, she knew. Did she know her options? Yes, she wants to go forward with comfort measures only.

I have thought of that conversation often over the last year. Was there anything I could have asked to get to the whole truth? What could I have done differently to save my mom from the days of pain and fear? I don't know what my mom would have decided if she had known all the facts the entire time. She wasn't given the chance to make those decisions. She didn't realize she could say, "What are you doing and why and are there alternatives?" She was put on a ventilator with the hope that her lungs would heal; she took heart meds and antibiotics and pain meds; the doctors treated her lungs, her heart, and her broken bone with a focus on their specialty. No one had put all the pieces together to treat the entire person...

until Dr. Navia. Now there would be a time of transition. The timeframe was unclear and how long she would stay in the SICU wasn't certain. We all trusted that Dr. Navia would sort things out because this was his specialty. My brother and I were now armed with all the information and we would be there every step of the way.

I asked at the nurse's station about visiting after hours when my sister arrived. That decision was up the charge nurse, so I would have to call later that night to find out. It worked out that the same wonderful nurse was on duty that night and when I called she spoke directly to the charge nurse. We had permission to visit when my sister arrived.

While I was waiting for my sister at the bus stop, my phone rang just as the bus was pulling in. It was my brother and his partner. They had gotten the messages. He had been working on his car to get it running, and they were coming Wednesday. 

That late-night visit at the hospital was surreal. It was the three of us chatting and grinning because we were together. Mom had had a few sips of water and some applesauce. The SICU was quiet. The nurse brought in cups and a pitcher of water for us, which tasted as good as any wine. 

There were moments of grace in those difficult days. There were people who helped my mom and my family. I think often of those conversations, too. 

We didn't know what the next days would hold. We did know that we would face it together.

A Pivotal Day

A year ago that first Monday morning in June brought back the hustle and bustle to the hospital. I thought I had found quiet spaces in the hospital to have video chats with family, but it turned out they were waiting rooms for the doctors' offices so were empty on the weekends. All the medical students were back so doctors' rounds were going to be at full capacity.

The first thing my mom brought up when we arrived was her medical directive. My brother had brought a copy with him, but the original was in a bank safe-deposit box 90 miles away. My brother was ready to go get it. At that moment a chaplain we hadn't met before appeared in the doorway and asked if she could visit. We were in the middle of the discussion about treatment decisions, and Cass was the perfect person to be a part. Mom started explaining that she was trying to figure out next steps and Cass asked all the right questions. Mom concluded that what she needed at that moment was a DNR order. She decided to talk to the doctors during rounds.

Then Cass discreetly took me aside and asked me if I knew that the hospital offered palliative care through a Support Team of doctors and social workers. I had no idea and said we were at the very beginning of these discussions. Cass suggested I ask the nurse for a meeting with the Support Team.

Like clockwork the doctors entered the room for rounds. The doctor in charge for the week said there would be an assessment by a speech therapist to determine if my mom could swallow well enough to have fluids and soft foods by mouth. She went through the routine of talking about what had changed and what hadn't. I asked Mom if she had anything to say, and that's when she talked about her quality of life, how she didn't see a way forward, didn't see herself getting better or being able to walk. She told the doctor that she wanted DNR written in her chart. I have never seen a doctor try so hard to not look surprised; she explained exactly what that meant and asked my mom if that was what she wanted. The doctor looked at me and my brother, and I said this was my mom's decision. The doctor again made sure my mom understood that an order of No CPR and No Intubation would be in her chart; my mom stated that that was what she wanted.

Later that morning the speech therapist declared that Mom could have ice chips, fluids, and pureed foods - the first things she could have by mouth in nine days. The nurse said this was a step toward moving to a room. I messaged family with the good news.

The afternoon came with yet another chest x-ray. There was a bit of congestion and it was ordered that she could have nothing by mouth and was again put on high-flow oxygen. She wasn't on the vent, but every other bit of progress had been erased in minutes. I honestly considered sneaking her a bit of water, but then if she choked I would have been devastated.  

My brother supported my mom, but he was having a very hard time with the direction things were taking. From the first day he had questioned the doctors and nurses about every treatment decision because he wanted to understand what was happening and why. Now our mom was making decisions that he didn't understand as hard as she tried to explain. 

So I took it upon myself to make my way to the nurse's station to ask for a meeting with the Support Team because my mom wanted to know her options. I asked the nurse to keep it between us until we had an appointment for the meeting. He said he would make the call, and that it wouldn't be until the next day.

So many things to keep quiet. My mom was adamant that no one other than family and the home health workers back home were to know that she was in the hospital. I asked her if she wanted me to let her late husband's family know and she was firm in her answer "No."

I wrote in my notes that Mom was frustrated, overwhelmed, angry and miserable. Now that she was ready to make decisions she didn't want to wait. I explained to her that it was like the government - she worked for the federal government for many years so she immediately knew what I meant - and that it would take time to get all the right people together to meet with her. I was concerned for her when I left that evening.

We didn't find out until the next day that there were things that we still didn't know, despite one or both of us being with Mom all day every day and asking questions all along the way. 

It was a restless night for all of us. 

Communication

The days at the hospital were long. I arrived before 8 a.m. to get in line for the doors to open for visitors. Visiting hours ended at 7:30. My brother and I were sharing a room in a run-down Hampton, which offered a complimentary breakfast and little else; the benefits were that we weren't there much, it was minutes from the hospital, and it cost a minimum amount of reward points which stretched the stash we had saved from Ken's years of work travel. So when Ken and my sister-in-law offered to come we thanked them but said it wasn't the best idea; only 2 visitors were allowed at a time, and my brother and I were completely focused on our mom. I needed to stay present.

And that has made this practice of writing about that time last year so eye-opening. Last night my hands started shaking as I was typing that post. It's not that I haven't been sad and taken time to grieve. What's coming up now are the things I couldn't take time to think about while everything was unfolding. I am writing things down here that I haven't said out loud.

What I am most grateful for is that I have no regrets. I was able to listen to my mom and advocate for what she needed and wanted. That was a critical element as conversations took place on Sunday. 

At one point she and I were alone in the room. She was angry, frustrated, and blamed me. Why did she have to fall? Why wasn't she getting better? I stayed right there and listened. I answered that she had every right to all those feelings, that I was strong and could hear anything she wanted to say, I wasn't going anywhere, and I love her no matter what. I reminded her of the challenges she had within herself and with her aunt, the woman who rasised her, when it came time for Aunt Kate to go into a nursing home. She took a moment to think about that, and we went on to talk about that time and all that my mom was feeling now. There were important insights for both of us to consider.

Later that day my brother returned to the room, and my mom initiated a conversation about her medical treatment  and end of life decisions she wanted to make. It was a hard discussion, especially for my brother, but it was so necessary. Mom needed to talk about her wishes. My brother and I reassured her that she was in charge and the decisions were hers to make. We would support her. We all agreed that she needed to talk to the doctors during rounds the next morning.

My sister was coming in late Tuesday night. It had been difficult for her to schedule flights from Scotland to Pittsburgh, with a change in Canada. She would take a bus from Pittsburgh to a bus stop across from the hotel. I would get permission for us to visit Mom as soon as she arrived. I had tried to keep my sister updated but it was impossible to relay all that was happening with messages and the occasional video chat. I was glad she was coming.

We had all tried repeatedly to contact my younger brother since the day of Mom's surgery. He didn't have his own cell phone or computer, and he had changed jobs so we didn't have a work contact. We had left messages on his landline and his partner's cell phone, and she hadn't called back either. We were sure he had gotten word somehow and thought he must be having trouble figuring out how to travel the 200 miles from Virginia to Morgantown.

The unique aspect of the relationship among the four of us siblings is that we don't argue. It's not that we always agree. It's that we don't see each other very often and we value the time we do have together. My older brother is two years younger than I am, and we have had each other's back since we were little kids. My younger brother is seven years my junior. I was fifteen when my sister was born. We have different interests and occupations and family configurations. The thing we have in common is that we love our mom. That was going to be a saving grace in the coming days.

June 4

Last year June 4 was a Saturday. It was my seventh day in Morgantown, WV, and my mother's tenth day post-op. She was still in the surgical ICU. My brother left for home the evening of the day I arrived because he had only packed for two nights (he was there four) and he needed to check in at work. I would update him daily.

The morning of the day I arrived the doctors decided my mom needed breathing support because she was exhausted; she was put on a ventilator in CPAC mode. She was breathing "over it," fully conscious, with the expectation that her lungs would benefit from the support and her oxygen level would improve. The respiratory technician regularly checked on her, and we had daily conversations about mom's progress and what needed to happen for the vent to be removed. They gave her a breathing test each morning and that determined the treatment each day. Every morning at doctors' rounds I heard, "She couldn't pass the breathing test; one more day on the vent." 

So my mom perfected communication without talking - hand signals, eye movements, tracing letters on her sheet, and shrugging her shoulders. I asked the staff about a white board, and on Wednesday the respiratory tech found one. Mom and I "chatted" about all kinds of things. I asked her where she wanted to be after the hospital, and she wanted to be near my brother. I was hoping that would be her first choice. He had been a major support for years, a steady presence and trusted advisor. Wednesday was a good day.

Thursday morning I arrived to find her sleeping. She was too tired for the breathing test. Her hip was not healing, and her heart rate and oxygen level could not be regulated. Mom slept off and on all day. I texted my brother and advised him to come on the weekend. Friday was much the same as Thursday, and my brother arrived Friday afternoon.

Considering the way the week had gone, I was stunned when I arrived at the hospital Saturday morning to see my mom sitting up in bed and talking. While it was wonderful to hear her voice, I wondered why the change. The doctors had removed the ventilator and put her on high-flow oxygen. I could not get a straight answer from the doctors as to why the decision had been made. They would not say she passed the breathing test. She could still not have anything by mouth, hooked up to tubes for anything she took in. Her condition seemed to be the same.

My brother and I had a long conversation about what the change could mean. He wanted her to stay on the vent until things improved; I explained that the vent was not a long-term solution. He wondered if they would put her back on if her condition got worse. I said I didn't think so, but he could ask the doctors.

My notes on the day are clinical, facts about her condition and who I talked to. I didn't write anything down about what I was thinking because my thought was that this day was a turning point. My worst fear was that it wasn't in the direction we had all hoped for.

The Journey

My mom was used to me taking care of things. Maybe it was my personality as the oldest child in a dysfunctional family, or I was someone who learned very young that anything I could do to keep my father from getting angry was worth the effort. 

Last year on May 25 my older brother, who lived three hours from my mom, went to the hospital to be there when she got out of surgery. He and I were in regular contact through texts and phone calls so I knew everything that was happening. Meanwhile, for the first three days I was making phone calls to everyone I could think of to discern what the next steps would be when she was ready to be discharged because that was what we all expected to happen. By the end of the third day I knew I had to make plans to travel to northwest West Virginia. Mom was not recovering the way she needed to as her afib and low oxygen levels and intestinal issues were complications on top of all the aspects of hip surgery. My brother needed the support. My mom wanted me to come. 

She knew I would come even though she hadn't asked me for help for 37 years. When I was 30 years old I had to choose between maintaining the relationship I had always had with my family and making the difficult changes I needed to make to take care of myself and my children. For many years my mom didn't understand ~ at one point early on she asked me if I could please just act the way I used to when I was around her and my father because that was easier for them. I explained that I couldn't do that, it wasn't something that could be turned on and off. I had chosen my life over hers and I wasn't going to change back. 

My mom and I maintained a civil, cautious connection through the years. It was in the last few years that we started talking about how life really was all those years ago and the ups and downs of our current lives. We talked openly about our complicated feelings for each other. In the last five years we called each other more often and sent each other more cards. She knew I loved her and I knew she loved me. We respected each other's boundaries. 

So when she asked me to come I knew I needed to go. My mom needed someone who would listen to what she said, understand what she meant, ask the tough questions, have the difficult conversations, and be honest every step of the way. I loved her and could still do the hard things. I could take care of her and take care of myself at the same time. She knew the work I had done, the journey I had taken. 

This poem has been top of mind this week. I found it many years ago and, like so many others, felt like it had been written for me. The journey continues~ 

The Journey

by Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice–
though the whole house
began to tremble
and you felt the old tug
at your ankles.
“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do–
determined to save
the only life you could save.

June Has 30 Days

Two weeks ago I wrenched my back. I have strained my back a handful of times in the past 35 years. I have never so seriously twisted it. I have seen my osteopath twice in the last week, which is another first. I am still moving slowly but I think I am on the right track to recovery.

When I saw the DO for the second time on Tuesday she said she hadn't seen me in such bad shape before. We reviewed what had been going on in the last month. The first week of May I drove 1200 miles to Philadelphia and back with my granddaughter and daughter, for her job. I walked and walked  all over University City with Maggie while my daughter worked. Then the two of them had a day at Hershey Park as we headed north, while I had a lovely visit with a dear friend. It was a wonderful week, beginning and ending with stop-overs near Boston to visit with my sons and their families.

When I got home I started taking things out of my bedroom to prepare for fresh paint on the walls and trim. I left just the bed. I took my time so it took a week to prepare the room and several days to paint. Through the whole project I was careful not to twist and lift, careful to secure my footing on the ladder, sure to take regular breaks to rest and eat, and I didn't push myself to finish. All went well until the last evening, when I put non-skid coasters under the bed...and on the lift of the second corner I felt the pop. Uh oh. I thought I had strained my back and it would take a few days of taking it easy to feel better. I already had an appointment scheduled with my osteopath six days out and surely by then I would be in better shape.

No such luck. She worked and worked and everything hurt. She did all she could in one treatment and told me to call for another appointment if I didn't feel better in three days. It was a holiday weekend so I left a message Monday evening and I went in again Tuesday. She could tell right away that things were still twisted. That's when she went back through all that I had done in May. Then she asked if there had been any additional stress.

It took me a moment to gather myself. I answered that last year these were the days when I was with my mom in the hospital in West Virginia. I have been reading through the notes I took during that time in a journal filled with dates, times, phone numbers, conversations, doctors' reports, tests done, mom's condition, questions to ask, and next steps. There is very little about how I was feeling. There was no time to process all that was happening ~ I needed to stay present to be there for mom. That's when my doctor reminded me how busy the rest of the summer was. She asked me if I have taken time to process the feelings. I told her I had been trying to reframe that experience; and as I have gone through decades of photos I have also been trying to reframe how I think about my mom's life. She said she could feel a shift in my body as I talked. Ah ha. There's something else to think about and process.

When I left the doctor's office on Tuesday I did feel a bit better. Today, June 1, I am moving more freely and with less pain. That's true for my feelings as well. The best way I know to work things through is to write.

June has 30 days. That gives me thirty opportunities to write.

Let me end with a poem by Lemn Sissay, shared by Anna on my last post:

"How do you do it?" said night
"How do you wake and shine?"
"I keep it simple." said light

"One day at a time."