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."     

Almost May

Tomorrow is the first day of May. It's a rainy windy end to April here. There are intentional daffodils blooming in the yard for the first time ~ I planted bulbs last fall.

Fifteen years ago I started this blog. Officially I started it in March with a brief post. My idea was to connect with family and friends who live elsewhere. That worked to some extent. An unexpected benefit was the connection with other bloggers, some of whom I still keep in touch with, although not all through blogging these days. 

I am not ready to give up blogging. I just want to figure out how to write about what I am thinking about now. 

It has been a rough couple of months ~ lots of feelings around the loss of my mom and how to reframe how I think about that. I haven't yet celebrated her life. Next weekend there will be time with my children and grandchildren to remember her, a simple informal gathering to share whatever comes to mind. I have gathered a few photos. I want to keep things open and easy.

There is more to write about. There is more to come.

The journey continues.... 

  

Begin

For weeks I have been mulling over what my word of the year would be. Today a word I hadn't even considered settled in my consciousness and wouldn't leave.

My word for 2023 is begin.

So much has happened in the last three months ~ bronchitis, the holidays, covid again, work drama. 

I get caught up in the day to day. Then a week has gone by. Then it's a month later. I'm where I was and not where I want to be. 

Leave the "have-to's" and "shoulds" behind. Put aside the worry and self-doubt. 

Just begin.

Arrange photos in albums. Create memory books. Send notes. Try recipes. Knit new patterns. Design quilts. Make clothes with patterns new to me. Envision flower gardens. Write poetry.

It's all right there. It's all possible.

Begin.

Two Months Later...

 I had plans. As often happens, life had other ideas.

I was looking forward to house/pet-sitting for my daughter the weekend before Thanksgiving. I had some projects to do for her, and I was going to write and catch up on correspondence. By Saturday the annoying, hacking cough and runny nose I'd had since Tuesday morphed into fatigue and shortness of breath. I managed to keep moving, albeit slowly and with frequent resting, and got some things done with the help of my husband. By Sunday I was all-in and home in bed before noon. I saw the doctor Monday and had a chest x-ray Tuesday: the good news was my lungs were clear; the bad news was that it was a virus that had to run its course. The week was cancelled. My daughter brought groceries on Wednesday and courses from the dinner she had made for Thursday. My husband started fighting a cold, so we were quarantined for the duration. By Tuesday this week, two weeks since the start, I felt well enough to go back to work.

Yes, I have a part-time job, started the first week in October. Three afternoons a week I work at my granddaughter's after-school-care program. I love it. I get to be with 25-30 kids from kindergarten to elementary school age, and I get to talk to adults I enjoy working alongside. We are a creative group, thinking of crafts we can do and always ready to change things to improve the program.

In September I started helping my daughter organize rooms at her house. I love that sort of thing, and it has meant that I get to spend time with her. We work and talk and have lunch and work some more. She passed me her fabric for safe keeping and told me to use what I want, setting aside the solids for her future projects. I have had so much fun sorting and organizing and dreaming of all the things I can do! This set me on the path to take a hard look at my sewing room, what works and what doesn't. In August I brought my mom's wooden kitchen table home to replace the computer table I had been using, and I wanted the room to be more functional...which led to completely rearranging the furniture. I didn't even have everything put away yet, and I just had to sit down and start sewing! The biggest change, and the most necessary move to make the room work for me, is that there is no longer room for the twin-bed trundle to become a king-size bed. The room still works for little guests but no longer for adults. There is a double-size futon downstairs and various other sleeping options for individuals. I was holding a space for once-or-twice-a-year visits, which was a surprising realization...

which seems to be the theme for this fall. Ideas and feelings have bubbled to the surface, and I have accepted them all. No anxiety. No fear. No denial.

The river continues to flow. There is a lot going on underneath the surface....