The journey started three years ago when my father was diagnosed with MDS (Myelodysplastic syndrome). It is a rare (fewer than 200,000 cases in the US per year) blood cancer. Even though it is a pre-leukemia the oncologist explained he would pass from it before it even developed into leukemia. I learned much more than I thought I ever would about it from the internet and trips to Tufts Medical to see an oncologist who is a specialist in the disease and visits to the Cancer Center. My Dad suffered through chemotherapy, many platelet and red blood cell transfusions and several stays in the hospital. It was difficult on me being an only child as all of the help rested on my shoulders. I would get calls at all hours of the night that he was being rushed to the hospital in an ambulance or most times he wanted me to drive him. I could tell them in the ER the values of his blood and platelets in which they should transfuse. My father would kid around that I was a doctor, which is very amusing as the sight of blood makes me pass out.
Not only was this time difficult enough with my Dad's illness but my Mom also had a major stroke in the car on the way to my daughter's dance competition. She ended up going into rehab for a long time to regain her memory and relearn how to do things. All the while my Dad was still in and out of the hospital and dinners rested on me as my Dad didn't cook. There were times I didn't think I could do it anymore. I was trying to balance my family, work, and my parents who at the time felt like two more children.
After struggling with the disease for so long and two regimens of chemotherapy nothing was helping. My Dad was rushed to the hospital and he called me at 3 am to say he was done with chemo and transfusions and just wanted to let nature take its course. That message is still on our answering machine and I don't have the heart to listen to it. I ended up talking to him in the morning to hear of his wishes. I worked with the hospital to have him sent to a Hospice Facility. At the time they said he could possibly live a couple weeks but instead only lasted two days. I heard his last breath and called the nurses.
It was a difficult time. I had to sell my childhood home (which has since been torn down and rebuilt) and move my Mom in with my family. My Mom now had no will to live crying all the time and asking to die. It was heartbreaking. Things that she once loved like watching my daughter dance she was no longer interested in. It was difficult taking care of her. She would throw out visiting nurses, refused any medication for her depression, and was sometimes difficult. I felt like I was taking care of a toddler but one who was my Mom and could say no. She went unconscious at the kitchen table and ended up in the hospital only 2 weeks after moving in with us. I felt like a failure and even remember saying to the paramedics how she had recently moved in and obviously I wasn't doing a good job taking care of her. She ended up going to rehab as they said her blood pressure was dropping when she stood up too fast. My son was very sad as he had setup Thanksgiving to look like it did in my childhood home. Unfortunately, she spent Thanksgiving in the hospital. I remember how excited my Mom was to go to see my daughter perform in A Charlie Brown Christmas, pictured here. This was the last time she left the house before she passed 10 months later.
Ultimately about 10 months later in October of 2020 she fell in our house (after many falls) and went unconscious again and was mumbling random numbers. She went to the hospital who sent her to rehab the next day. She ended up having another major stroke in the rehab center and passed within a week. This was quite unexpected as I just thought her meds would be adjusted and she would be fine like before. With COVID it was difficult to see her. She was placed in quarantine because she had come from the hospital even with the fact her test at the hospital was negative and her not leaving the house since when the pandemic began. When she had the major stroke they allowed me to go see her with a N95 mask, face shield and gown. It was heartbreaking! She couldn't talk, move her right side, or even eat. Seeing her like this and discussing her wishes previously I knew she didn't want to live like this and though it broke my heart not to have her go back to the hospital with her DNR I needed to honor her wishes and let her go. I would call family and friends and put them on the phone with her to say their goodbyes. It was gut wrenching to listen to, especially her brother.
The last day I went to see my son play soccer and then headed to the rehab center. I was limited by the rehab center in how long I could spend with her. Unfortunately, when I arrived, she was already gone. The nurse said they had checked in on her 10 minutes before and she was alive. Those 10 minutes will haunt me forever. What if I had not talked to a couple parents after the game, if I had driven faster, I will never know. As I cried holding her hand all I could do was apologize that she passed away all alone. I will never forgive myself for this.
During this time it was so hard being an only child. Growing up I always wanted a brother or sister. I was so envious of people who had them. I had no one to hang out with on vacation, talk to about boyfriends or play with. As I got older I realized how much that want paled in comparison to the want now. Someone to help bear the brunt of drives to Chemo and blood transfusions with my Dad, to bring food to my Mother, help with cleaning out my childhood home, someone to go to rehab to help my Mother relearn everything after her stroke and someone to help with her care after my Dad passed. Someone to reminisce about the trip where the car broke down or keep me company for hours upon hours in the hospital. To help make the tough decisions at the end. As I walked out of the rehab center on the last day carrying the two bags of her belongings by myself, I never felt so alone and that I have no one that shares those memories with me of growing up with my parents. No one to call as I would call my Mother daily since the day I left for college. I always said I needed a calming person in my life (I have a lot of anxiety) and she was my calming person making me feel better when I got a bad grade or had too many drops in a baton competition.
