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 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.