What I Wish I Would Have Known (written by my niece)

What I Wish I Would Have Known

A Daughter’s Experience of Her Mother’s Passing

“Life began with waking up and loving my mother’s face.” ~George Eliot

People don’t talk enough about death and dying. It’s odd that it’s such a taboo subject considering it happens to all of us at some point, but I can understand why the conversation is generally avoided, especially in the context of terminal illness: it’s unpleasant to discuss how awful it is to watch someone you love slowly become a shell of the person they once were. Not to mention the guilt and sadness that accompanies their passing. My mother, after nearly winning a 2-year breast cancer battle, was struck rather unexpectedly by another very virulent pancreatic cancer and died nine weeks later. This experience was particularly difficult for me to process, because unlike other life struggles, this time there was no solution and no silver lining, and no amount of goal setting would make it better. For how prevalent this experience is, one of the main things that troubled me when my mom was dying was the lack of information about it. There are plenty of articles outlining the logistical things – DNR’s, wills, advance directives. But what about the personal things? What’s it like when someone dies? How do you know when they’re getting close to death? What should you say to comfort them when they fear their death? What do you do on their last birthday, or on their birthday after they die, or on the first mother’s day after they die, or the first Thanksgiving? How do you deal with this experience when family members are also suffering from mental illness? Before, during, and after my mother’s death, attempt after attempt to find guidance failed me. In addition to honoring my mother’s process and filling in any “blanks” for our extended family and friends, I just want to be as honest and vulnerable as I can be, because I wish someone had been that way with me.

In 2015, my mother was diagnosed with stage two breast cancer. She underwent treatment and responded phenomenally. In late 2016 she had her final surgery to remove what was left of the breast tumor, and her tumor margins and labs looked fantastic. She still had some more treatment to go, but for all intents and purposes, she had beaten breast cancer bravely and gracefully.

Around holiday time, several of our family members (myself and my mom included) got the flu.  My mother, however, stayed sick and wound up getting diagnosed with pneumonia, but she didn’t improve after taking antibiotics. On January 23 in the emergency room, my mother was informed her that her pneumonia was gone; her underlying illness was actually stage four metastatic pancreatic cancer.

Her illness was inoperable, untreatable, and generally unmanageable. There were too many variables for the doctors to be able to give us specific timelines (initially, they gave us “somewhere between two weeks and five years”), but the language changed for the worst at that point. It was no longer about plans for treatment, it was about keeping her as “comfortable” as possible, and perhaps extending her time with us, but there would be no more talk of saving her life.

I lived about three and a half hours away from my family, so much of this first news was received via phone calls and text messages between me and my dad. I quickly made it a priority to visit the hospital and my mom’s home once per week to keep myself informed.

Mom had several other health issues at the same time; she suffered at least one stroke while she was hospitalized, she had preexisting diabetes and she developed some severe edema in her legs and feet. She was also ordered to begin blood transfusions as often as needed to mitigate her anemia and aid her immune system while the chemotherapy kept her tumors at bay. She had to take insulin at every meal (though she rarely ate), take blood thinners to manage her clotting issues from forced inactivity, and was given a variety of pain medication to keep her as pain-free as possible. Everything was experimental and meant to buy more time, but nothing was guaranteed. After she left the hospital, she received hospice care from the VNA. Mom wanted to fight for more time, so we supported her, but we all lived with the reality that she was fighting so bravely against a disease that would soon take her life no matter what. That has always struck me as so cruel and so unfair.

If the whole world were put into one scale, and my mother in the other, the whole world would kick the beam.” ~Lord Langdale (Henry Bickersteth)

Seeing mom during this time was equal parts inspiring and heartbreaking. Although some of the chemo treatments seemed to help a bit, she mostly deteriorated in her last several weeks of life. She slept a majority of the time, and needed help eating, communicating, and walking. There were times when she would forget who she was speaking to or fall asleep or trail off mid-conversation. She often didn’t have the energy anymore to play legos or blocks with my baby nephew. In her more lucid moments she knew what was happening, and that was painful for her, which in turn was painful for the rest of us.

About a month after her diagnosis she asked me when she was going to die. I didn’t know what to say.

She also expressed her frustration that her words just weren’t coming out the way she intended  anymore. That cognitive change was jarring for her. My mother was always very cerebral and ruminative and spoke constantly (CONSTANTLY) about sociopolitical issues and history and personal battles. She had spent the last several years getting her master’s degree in social psychology, and she was working on starting her PhD. Admittedly, I was a bit estranged from my family and parents, but when my mom was diagnosed with breast cancer my communication with her became more regular; I would call her once per week and we would just talk (she was the talkative one in the relationship and we both acknowledged that, so I honed my listening skills quite well). Those conversations stopped happening abruptly when she got sick and her short-term memory faded.  Her altered, weakened state was hard on the family, but undoubtedly the hardest on her. At the same time, however, she somehow still managed to be funny and loving.

It was a fast decline, but an unsteady one. My mom had some relatively good days during this time, and as awful as it feels to say, my mom’s “good” days were almost more difficult for me than her bad ones. Every now and then I would receive positive updates about how mom had had a bit of an appetite that day, or been completely lucid all day, or was able to take a short walk around her garden, and as much as I wanted to be happy about these small victories, I couldn’t. I couldn’t process the news that mom was “doing well” while she was also dying of a terminal illness. It didn’t make sense to me. I also knew that for every peak there would be a valley; positive, productive days would inevitably be followed shortly by days of agonizing pain or debilitating fatigue.

My dad told me that one of the last trips they made was to the plant nursery a week prior to her death; he put my mom in her wheelchair and they picked out plants together when she was lucid enough to do so. He said she beamed and smiled and laughed. That story was absolutely heartbreaking for me to hear, and I still don’t really know why.

When I visited her she always put on a brave face and so did I. Early on in this process, I made a pact with myself that I would never let mom see me sad for the rest of her life, no matter how bad things got. I kept my promise. My mom’s last lucid memories of me were happy and joyful. I’m proud of that.

The behavioral and “spiritual” changes that took place in my mother as she grew closer to her end of days were fascinating. She became obsessed with butterflies, and told us that when she died she was planning on being reincarnated as my dad’s favorite butterfly. She would sometimes talk about people’s “wings,” and started referring to foods as “nectars.” She also developed and held onto the belief that she and my father were BOTH terminally ill; she always imagined both of them being hooked up to the chemo port, and would often ask why they both had to get sick at the same time (to our knowledge, my father did not have cancer, nor was he undergoing treatment with her). When she was awake, she wouldn’t let my dad out of her sight and became anxious any time he left her presence. She began to obsessively sort her material for sewing projects and sew quilts any time she was alert enough to do so.

She would very rarely worry about dying, but not for herself – she wanted her family to be OK, even when she got too sick to talk and walk. My oldest sister Sacha came to visit a few days before mom died (mom couldn’t speak or even move at this point), and mom at one point during that evening managed to sit up, and still unable to use her words, managed to get several of us walk her over to Sacha’s wheelchair so that she could just stand with Sacha and hold her hand. Her body was completely failing her, but she still made it a priority to say goodbye to us and tell us that she loved us in whatever way she could. This kindness, love, and care was an embodiment of who my mom was at her core.

“As is the mother, so is her daughter” (Ezekiel 16:44)

For those who haven’t experienced it, it’s difficult to describe how it feels to carry on life like normal when your parent is dying from a painful terminal illness. Outside of all of the unsettling end-of-life technicalities (see also: paperwork) that have to be discussed and urgently settled, it is a broken record of disbelief, anxiety and sadness. Since I couldn’t be physically there on a full-time basis, I asked that my father send me text updates detailing my mom’s progress at home. He was honest with me, though I noticed that his tone and coherence was slowly worsening, which had its ramifications later on: “rough day today. Pain was really bad,” “she sleeps a lot. She seems happy, but very weak,” “she appears to be slipping away Mariah and I’m not sure how much longer she can hold on.” My sister would tell me about how my mother couldn’t play with my nephew like she used to. My mother would occasionally send messages that wound up jumbled and incoherent due to her stroke and medications. Reading these messages from my family felt like I was being stabbed in the heart, but I adapted and learned to compartmentalize my shock. Although I processed through much of the acute grief fairly quickly and I was functioning like a “normal” person at work and in school, I still had a sinking feeling in the pit of my stomach (not unlike the feeling of fresh heartbreak) on a constant basis. I had trouble eating, I had nightmares, and I was unusually exhausted. I talked to my parents on the phone every day and visited weekly or bi-monthly, but I knew that there was an inevitable endpoint to those visits, and none of us knew exactly when that was going to be. I wasn’t prepared to lose my mother at 25, but it was happening, and all I could do was wait.

I had such a loving support system helping me through this ordeal, but I also had trouble relating to many of my peers. Complaints about mundane things affected me more than they ever had. Routine conversations made me resentful and angry. People cared and wanted to comfort me, but that would often manifest in comments and questions like, “how’s your mom?” Which resulted in me saying, “She’s dying.” And that can get awkward quickly. So I withdrew as much as I felt was necessary.

I did my best to enjoy the enjoyable things. I told myself that just because there was a really sad, really major thing happening didn’t mean that the happy small things in life had evaporated, and I had to acknowledge and enjoy those happy things whenever I could manage.

After a while all of this became my new “normal,” and I learned to accept the reality; however, I knew that a new wave of grief would hit me when mom died. And it did. But with that grief came relief that mom didn’t have to be sad or scared or pained ever again.

The two days leading up to her death were unforgettable. When I arrived at her house that Sunday, I just knew. Her eyes were vacant 90% of the time, and she was losing control of her bodily functions and muscular control. At one point during that night after I had helped her take a sip of water, I kissed her on the cheek and I told her I loved her, and she laid her head on my shoulder and told me she loved me back, and referred to me by our shared nickname for each other. Those were the last lucid words she said to me.

The next day, the day of my mom’s death, my father showed even clearer signs of cognitive decline; he had always been “untraditional,” and fallen on the unpredictable side of the spectrum, but the past few weeks had shown a clear and steady deterioration of his mental state. He would talk about spirits in the house and my mom becoming immortal. He wore all white, and drew crosses on the back of his hands (he had never been religious whatsoever). His moods were unpredictable. It was clear to everyone around that he was not of sound mind. After the hospice team visited that day, I became mom’s primary advocate per the advice of the visiting nurses, and was appointed to make calls and decisions on her behalf, which I did, and I could write an entirely new essay about that experience (including the part where the hospice nurse told me that mom wasn’t “dying enough yet” to get certain types of care). The tension in the household was quite high for a variety of reasons. But I was in a very focused daze.

I found the dying process itself to be absolutely horrifying and gruesome to witness, and in my opinion there is nothing graceful about the physical body’s departure. I was expecting that she would “slip away” and drift off, but that didn’t happen. I won’t go into too much detail, but the main shock was the way her breathing changed. Every time she took a breath it sounded like she was drowning, and I had such a primal, strong instinct to just make it stop. But that was just part of the body’s natural “shutting down” process. She passed away in her home at 7:19pm on Monday April 3rd, 2017 – my father told her to “take the rest of the day off,” and he kissed her forehead and closed her eyelids. After she died it looked like she was still breathing for a little while (this was another shocker that no one told me would happen), so I was convinced the nurse was mistaken, but she wasn’t. Mom was gone. My sisters and I were all there (which is a blessing and a rarity), my mom’s best friend was there, my dad was there, and we had two hospice nurses in the room who helped make the arrangements to get her body picked up. We said our goodbyes and called the immediate relatives, and then I called the mortuary not long after and we watched them (very clinically but inefficiently) load her body into the van while her dog, Baxter, guarded her at her feet. Her passing was profoundly sad, but a part of me also felt relieved. Her body had been gradually dying for quite some time, and I knew she wanted to be free.

That night, my dad and I stayed up most of the evening and I listened to him tell stories about my mom, and comforted him while he cried. It took me almost a full twenty four hours to realize that mom wasn’t there anymore; I kept worrying about waking her up.

A year later, here are a few of my reflections:

This next part was unexpectedly hard and difficult to talk about, but important. My father’s mental health continued to decline after mom’s death, and he “disappeared” to the mountains.

I was the alpha and the appointed executor of mom’s affairs, so the days following were busy, and sad, and hectic, and productive. Immediately after mom died, it seemed that *everyone* started needing something from me. I borrowed money, both from the bank and friends, so that we could fund mom’s cremation and keep the property and family functioning. I made phone calls and ran errands and got all of mom and dad’s mail forwarded to me so that I could sort things out as they came up.

When I went back to work (which I had to do fairly quickly), most people were kind but complaints and regular issues came up, which forced me to have to compartmentalize my grief even more. My friends were very supportive, so much so that they constantly wanted to see me and talk to me and take me places (trying to help), and this also caused me to push my grief further into the back of my mind so that I could function socially. While several friends and family members stepped up to help and console me, my dad, several family members presented very stressful issues, conflicts, accusations, and decisions that ultimately came down on me, as I was the unifying force. I had no time to grieve because I was taking care of everyone and everything else, so my sadness manifested at night in my dreams. The first dream that I had was of mom standing behind me at her house, and I turned around and looked at her and then I woke myself up hysterically sobbing, reaching my hand out, and saying “I miss you” out loud. The grief got worse as time went on. I awoke crying like that after similar dreams most nights, and it didn’t take me long to start resenting the people and things and responsibilities that kept me from having my proper processing time.

Boundaries are vital. I knew that I couldn’t abandon my roles in life (because the world didn’t stop when my mom died), but I needed to set better boundaries for myself. I don’t know how to do that, but I know that I will figure it out before anything like this happens again, and if I had one piece of advice for anyone else going through this, that would be it: set boundaries.

It is tempting to deify someone when they pass away, and to give an impression that their life and their relationships were always perfect. That’s unfair and I don’t want to do that. There is a lot of dysfunction in my family – so much so that it would take an entirely new essay to explain. One of the beautiful things about death is that it has the potential to bring people closer together, and this situation was no exception; toward the end of her life my mother was visited and contacted by immediate family and friends that she hadn’t seen or spoken to in months and years. It was heartwarming to see her reunite with her loved ones, and it was very comforting to see (and/or meet) some of my relatives and my mom’s old friends. There were also those that didn’t show up for her, but the love from those that did far outweighed the absence of the others. Although my mother and I became very close friends in her last couple of years of life, we of course had issues of our own. There were times in my life when I openly questioned her love for me, and the reciprocal was also true, and I will likely deal with that guilt for the rest of my life. But we moved past it and got stronger. I can now say with 100% unwavering sincerity that I love and respect my mom. I love her so much.


“If I had a single flower for every time I think of you, I could walk forever in my garden.” ~Claudia Adrienne Grandi

My mom had a strenuous life with so many unexpected and uncommon challenges and losses, and those types of experiences tint the lenses through which someone sees the world. But through everything she was always so funny and so fiercely loyal, and despite any conflicts she never hesitated to let my family know that she loved us more than anything in the world. She was an imperfect – but beautiful – soul; she designed gardens for a living and LOVED plants and trees (and butterflies) and protecting the environment. She was an unrelenting and tireless fighter when she believed strongly in something. But her most admirable and awe-inspiring quality, in my opinion, was her empathy. She always felt the pain of others as strongly as if it were her own. In her final days she proved again and again how loving and charming and unequivocally fearless she is. While she was in the hospital getting chemotherapy I looked at her and said, “you’re so brave. You make me so proud,” and her response was, “you make me proud too, every day.” She could have been scared or sad or angry during this time, but instead she chose love. If there was ever a vision and example of graceful passing, she embodied it.

My mom’s birthday happened thirteen days after she died. Mother’s day happened five weeks after she died. The grief intensified and settled into every part of my brain and body. Every time I had even a moment of stillness, a cloud of sadness would wash over me. A large part of my grieving process involved debilitating sadness and anger and guilt about the nature of my mother’s death; she deserved such a better death than she got. The thought that she knew she was dying for nine weeks, and how scary and heartbreaking that must have been for her, ran through my mind a thousand times per day. The memory of her lying in bed, unable to move or communicate made me physically ill. The thought that she knew that she would never be able to meet my children, or write that book she always wanted to write, or retire peacefully made me  angry and hysterically sad. But she was stronger than me. She showed us all how to live and die with such grace and ease. She deserved so much better.

To this day, every time I see a butterfly or a potted plant, I tear up. I regret not spending more quality time, and I regret not being able to give her everything she ever needed and wanted in life, even though I know if she were hearing this she would tell me that having her family was more than enough. I regret not showing more interest in my mom’s interests. I regret creating as much distance as I did, because I couldn’t always handle the harsher realities of the family life. I wish I had responded to every text message and every phone call, and I wish that I would have just sat and listened more often, as difficult as it sometimes was. I wish I would have told her every single day how much I respect her and love her with every fiber of my being.

I am sad and angry that she’s gone and that she had to suffer for so long, but I also feel relief that my mom won’t be in any more pain. There is no one on this planet more deserving of comfort and peace.

Above everything else, I feel so incredibly lucky that I got to witness firsthand, through her, how much grace and love and passion is humanly possible. She will always inspire me and push me to be better, and to leave this world a better place than when I found it.

I love you, Midge.

“Mother, the ribbons of your love are woven around my heart.” ~Author Unknown

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