Guilt, anger, frustration, more guilt, fear, anxiety, stress, hope, and a lot of prayer… I still vividly remember all of the these emotions and the constant back and forth as I grappled with being the care taker for my ailing mother and my five-year old nephew whom my mother had custody of before becoming too ill to care for him. In the still of the night when I awake from a restless sleep, or an everyday task, like grocery shopping while walking down an aisle and seeing a box of moon pies, my mom’s favorite, will trigger an array of these emotions, but mostly I feel a terrible guilt for all the times that I lost my patience with her, for all of the times I tried to convince her to go into a rest home, for all of the times I complained about to my friends about the burden I was under. Honestly, if I had to do it all over again, I would in a heartbeat.
I remember when I received the phone call that my mom would have to go on dialysis because her kidneys had failed due to the devastating effects of diabetes. I was living in Charlotte and was already commuting to Durham every weekend to help out with the care for her and my nephew. It was always a long and dreaded two hour trek to Durham from Charlotte. I would leave immediately after work and battle the traffic to get home in time to get her dinner from Bullocks, her then favorite place to eat. Each time, I would make the call 15 minutes before the restaurant’s exit, and then curse out loud when the phone would ring continuously busy after countless call backs.
I still remember all of the countless doctor visits and emergency visits when something went wrong with her shunt. The doctors called it “end stage renal failure.” Even then I was in denial that I would actually lose my mom. It was too unimaginable. I vividly remember when I made the decision to move back to Durham to care for her full time because I was the logical choice. Of all of my siblings, everyone had a bona fide reason why they could not be the chosen one to care for my mother full time, and I knew that I could never allow her to go into a rest home. I made that promise to her a long time ago. At the time, I had no idea what I was getting myself into. Even when my principal in Charlotte warned me not to move my mother into my home – I still remember his foreboding warning, “It will be the end of your marriage,” It almost was. I can even hear my god-mother saying “once she is in your home, you will be the sole provider. Everything will become your responsibility and your decision.” But what choice did I have?
So, now during my weekend treks home, part of my routine involved looking for a home that we could move into, a place with a downstairs bedroom and bathroom for my mom. I remained optimistic and even my husband who absolutely loved Charlotte knew that there was no reasoning with me when it came to my mom. He would have to accept the move and come with me or enter into a long distance marriage; after all we had done it before and survived. Of course that was not ideal, nor financially practical, so he resolved to make the move with me.
We were both determined to make the best of the situation and we were actually excited about being first time home owners. We even had the conversation that Justin; my nephew would likely be the child that we would never have. We could never have imagined that we would be in our home with my mom for eight years, watching her health steadily decline and the quality of our relationship slowly deteriorate as well.
Looking back now, I can think of things that I wish I would have focused on rather than all of the resentment and anger that I carried buried deep inside me. I was angry with my siblings because I felt that they never understood the true sacrifice that I was making and no one ever just reached out and said “Thank you Bucci for doing this.” I realize now that I played the martyr and saw myself as making the great sacrifice, but truly the time that I spent with my mom should have been so much more valued and appreciated. Instead I became entangled in a web or resentful, so much so that I lost sight of what was truly the essence of my relationship with my mom, not so much the caretaking, but the memories I would be left with after she was gone. Regrettably that was not my focus, I was more concerned about the freedom I no longer had to just leave and come and go as I pleased. Arrangements had to always be made. Who would get my mom up and dressed? Who would give her morning and evening meds? Who would get her lunch? Who would get her dinner and her evening cup of coffee? Who would provide her daily dip of snuff and wash out her spit can? Who would get her dressed for bed?
The novelty and adventure of moving into a home with my mom and my nephew was paper thin, and lasted for a Nano second. I was testy and moody. I no longer had the freedom to come and go as I pleased. If I wanted to go away for the weekend, I had to arrange with a sibling to come over and take care of my mom, which included getting her bathed and dressed, preparing breakfasts and giving her the medication that was constantly growing with every doctor’s visit. I spent countless amount of time calling in prescriptions, picking up medications, filling up pill dispensers and keeping up with doctor appointments. No one knew this, but I was always nervous because slowly my mom’s health began to deteriorate right before my eyes. It became more difficult for her to walk to the kitchen table to eat. She was always fatigued and always so sad. She never complained or asked why she had to be the one to suffer. She never complained about the care I provided her and she never asked me for anything. She sat quietly in her room and listened to her stories or listened to the news. Did I mention my mom was also blind? She lost her eyesight about a year before she went on dialysis and shortly after she had gained custody of Justin.
I guess this is a good place to share about Justin. Justin was the son of my now deceased sister, Joann. Joann suffered from mental illness and when she became pregnant, my mother who was the most giving person I know said to us, “I don’t know what condition this baby will be in when he is delivered, but he is my grandson and we are going to take care of him.” Justin was born in September of 96 and he was the only true joy that my mom had. She tried to get her health in check after Justin was born because she knew this little infant, her grandson would need her mightily, but it was too late, the effects of diabetes had set in and slowly my mom who already had glaucoma lost all of her vision. She continued to have custody of Justin with the help of everyone in the family. My youngest sister moved into an apartment with my mom and was to be her and Justin’s care taker. I had set everything up with the housing authority because I was newly married and was planning on moving to Charlotte, but needed to know that my mom and Justin would be taken care of , hence my driving to Durham every weekend. I wanted the arrangement to work so badly that I came home every weekend to relieve my sister for the weekend. My sister, Lisa provided a lot of additional support during the week while I was in Charlotte, but when I moved back to Durham, I felt that every decision became mine to make. There were no arrangements made for any of my siblings to rotate weekends so that I could have a reprieve for myself, it was attempted, but failed. Yes, the anger that I felt was raw and real. I began to see myself as a victim. No one understands what the care taker goes through. No one understands the challenges and day to day struggles of the care taker. This is what I constantly fed myself in my private thoughts. Self-pity was my outlet.
Again, I no longer feel guilt, but I have felt regret because I focused on all of the wrong things. Even though I provided for my mom, the last three years of her stay with us she required around the clock care and it became necessary to seek services that would provide care assistant. Her name was Muriel and she was a god-send. Muriel came in the mornings and got my mom ready for dialysis and got her breakfast. She took such amazing care of my mom. I came to love her as family. She stuck with us and loved and cared for my mom until the end. I also had a person who was hired to pick my mom up from dialysis three days a week and get her in the house, fix her lunch and make her coffee and then guide her to her room and get her dressed an in bed. None of this could have been managed on my end because I worked full time. It was such a welcome relief to have steady and trusted help with my mom. But still, I felt burdened, there were so many doctors’ appointments and so many health decisions that had to be made, and so many calls to 911 when my mom was bleeding because her shunt was not working correctly, or when she fell and broke her hip when I was trying to get her in the house. I was never really at ease and was always nervous when the phone rang. It was a feeling of “what now?”
I wish I had focused on the blessings, like the fact that my mom was originally given a year to live and she lived for eight years, or the times that Justin and her other grand –children made her smile, or when Mike or my father-in-law would make her laugh, or when the entire family was able to be together for Thanksgiving and Christmas, and we knew it was special because we might not have our mother with us for the next holiday. I wish I had spent more time in her room in the evenings , reassuring her. I always came to her room and asked if she needed anything and then would tell her goodnight. I wish I had sat with her more. I wish I had read the Bible to her. I wish I had played her favorite music or asked her questions about what she was thinking or feeling. I wish I had not been in a hurry to slip away on the weekends and get what I thought was a break. I wish I had not gotten annoyed when she would ask me where I was going and when I was coming back. So many people commended me on being a wonderful care taker for Justin and my mom, but I just remember always complaining to Mike and always feeling frustrated.
I remember when things were at its worst and I actually looked forward to going to work as an escape from my personal life. I remember feeling resentment toward my husband because I needed him to be a better financial provider so that I would not have to work as hard, all the time, I should have focused on the love, support and care that he provided Justin. I should have been thankful for the true father he was to him, and the love that he showed my mom. Instead I felt like we both played our roles and grew further apart. I took care of my mom and he took care of Justin, we did not take care of each other, and I felt no one took care of me. When Mike and I discussed separating, my only concern was who would help me take care of Justin and my mom; there was no concern for the relationship itself.
Regret is something that should not be felt because the past can’t be changed, but I do wish that I had been more present in the life and time that I had with my mother rather than focusing on the burden of being a caretaker and the fear that I was going to lose her in the end.
When the time came and I knew that my mom was in the final stages, I hurt deeply, but I also felt a sense of relief. I had watched my mom become a shell of the person that she used to be. I hardly recognized her any more. I knew that her long suffering was over. She was the most resilient and definitely the strongest woman I have ever known or ever will know. She suffered quietly and she loved all of her children fiercely and quietly. In the end, I felt guilty because I was preparing for the freedom that her death would bring, not just for her but for me. I remember the night that she passed; it was Thanksgiving night, really the next morning. I remember, finally falling asleep and making the decision not to go to the hospital. We had been spending every night there so that she would not be alone. We knew it was a matter of time and it was so surreal planning her funeral, picking out what she would be buried in, all while she was in the hospital slowly and quietly slipping away from us. When I finally woke up, I saw my phone and there were eight missed calls and I knew that my mom had passed while I was selfishly sleeping.
It’s been close to ten years since my mom passed away. I have long sense let go of the anger. I put it in perspective and know that everyone will view the situation through their lens. If my siblings were asked about mom and their role in providing care and support, they would likely have a very different perspective, so I have let all the emotions of anger go, and recognize at the end of the day we are family and we have a short time together on this earth. What good does blaming or pointing fingers do? It’s not even that I forgive them, because again, this is all my perspective. I just know harboring anger is equally heavy and burdensome as carrying guilt, dead weight that I don’t need in my life. There’s already too much death around me. I choose resiliency, moving forward and looking ahead. However, all of this has come with the gift of time and perspective.
The constant guilt and regret have long sense been replaced with warm memories, lessons learned, and the aching pain of missing her. I have no regrets when it comes to being a care taker for my mother. I would do it all over in a second, but what I would change is my attitude. I would be present in the moment and treasure the precious time that I had with her. She is my heartbeat and I still talk to her in the quiet of the morning. I know she is with her mother and she has Joann with her and they are now my caretakers in heaven until we meet again in the afterlife.