“It’s difficult to put into words how much I feel like I’ve already lost dad when he’s still here. So much of who he was has been replaced by a new reality that keeps changing, making the spark that once defined who he was seem only a flicker now. I know it’s also not easy to go through changes in one’s body and not have control over what happens next. All the things we take for granted can be taken away just like that, no preparation, no consolation, either. In the end, we are only left, sometimes cruelly, with memories of what life once was, and no way to go back. Change is the only thing to look forward to, if only to improve our outlook through difficult days. Things get worse before they get better. Ultimately, people leave voids in our lives, and only time makes it easier to bear their loss. That is the only consolation we can ever hope to have as our ”better.”
Walking in the the dark makes us appreciate the dawning of a new day
In dad’s final weeks, I didn’t know they were his last days - yet, there was that possibility. All year, I grieved him in different ways, and I stumbled upon the phrase “anticipatory grief” which fully explained what I couldn’t put into words until I wrote the above statement in January of 2020. Diagnosed in 2018 with advanced diabetes type 2, and then cirrhosis caused by chronic hepatitis B, along with neuropathy and retinopathy, doctors still assured us dad was only minimally affected and could live for many more years, yet I wasn’t convinced. I went through a cycle of doubt, then hope, then guilt at thinking the worst, and back to concern. Then, it was when dad was finally hospitalized as his body started shutting down in November 2020 that I knew we were at a crossroads. Was this the beginning of a new setback season or was this the end? At first, I wasn’t ready to let dad go, and I told God that. But I also didn’t want to see him continually suffer because the doctors were trying to find any medical cure they could to explain his symptoms because at the time they didn’t know he was in end stage of organ failure from the neuropathy. I’m grateful that they were optimistic for his recovery, because dad kept fighting. That gave us time to be with him, at least in the beginning. Knowing that I’m somewhat repeating myself in my previous blog, but while that was a summary of what we went through, it gave me the push I needed to continue talking about our journey.
I have so many thoughts about what it was like to live through the pandemic year. And with all local restrictions in place in our city to keep patients and visitors and staff from outside germs, so spouses weren’t allowed overnight stays, and only one visitor per entire day was allowed. For over a week, mom went daily to be with him. The hospital wanted to make him stronger for transfer to a rehab facility, and when they called mom one morning, they let her know no visitors would be allowed the following day. She wasn’t feeling well, so she sent me instead. And I spend a whole afternoon with dad. It was truly a gift!
After that, we could only talk via text, phone, or video chats. And then he coded and died for 6 minutes before they revived him and remained in a coma for a week, during which time they said he was slightly responsive and critical but stable. Which meant we still couldn’t visit him (unless they felt he wouldn’t make it). During that agonizing time, I had to give dad up to God, as much as I wasn’t ready to let dad go. He tested positive for COVID 19, was asymptomatic, but got put in isolation and given plasma and medication for treatment. When he had finished his quarantine and was still so weak, that’s when the hospital let us see him so we could meet with the palliative care team and start thinking about ending life support on a gradual basis. Only...dad woke up and was alert in response to our presence! It gave all of us some hope and kept us waiting on how much more he’d improve and if rehab would be the next step. He wanted us to visit again, but because he was doing so well compared to just days earlier, he was back to no visitors again. In some ways, that part of his hospital stay was even more agonizing because he was in and out of sanity, wanting to talk to us whenever possible, but not always fully grasping where he was and had lots of hallucinations. And because hospital staff was stretched so thin, they weren’t always willing to help him call us, even though mom spent literally every minute of every night with the phone beside her, waiting on when he’d call. During that time, she started waking up in the middle of the night hearing him call out to her, and we know for sure he was in fact at least for some of that time awake and asking the nurses to dial mom but they would say to wait until morning. But that entire last week of his life, she would wake up at 3 a.m. hearing him, except on the day he died. The only good in any of that week at all was that the nurses did let us schedule video chats in the evenings so that we talked to him at dinner time, including the night before his death. He had so many ups and downs, and doctors couldn’t decide if he would turn the corner and get strong enough to be transferred to a rehab facility, but finally in the last few days of his life, they said all they could do was keep him comfortable and they said that if he coded again it would be even more damaging on his body, so we let them take him out of ICU into a general room. We still couldn’t see him because they wanted to see first if his kidneys would improve with dialysis. He couldn’t really talk at that point, only nod and look at us from his phone screen. He tried to speak, but because of being intubated twice and extubated twice, and unable to eat because of the risk of aspiration, he was weak and kept wanting to go back to sleep.
That last conversation we had with him left me restless all night, so that first thing in the morning just as soon as I went to work, I called to set up my next chat only to find out he was barely hanging on and that we could go see him. They didn’t say “come now,” but they were allowing us to arrive when we could, saying he could go within the next day or so. But when we got there a few hours later, the hospital check-in nurses downstairs were grilling us with questions and asking me to put the doctor on the phone to confirm we were allowed to visit, when at that exact moment the doctor was calling me to say dad was coding and to hurry up, he only had a few minutes left. We got ushered through and ran to the elevator to await the doctor who would escort mom, my daughter, and I to his room, and it was just the worst thing ever not knowing what to expect in those final minutes, and when we got to the door of the room, dad had already passed. On my husband’s birthday, of all days.
Nothing could have prepared me for how haunting it was to stand there, looking at dad but never able to have him respond to us again. To witness mom throw herself onto his chest, sobbing in agony. To see my daughter kiss him on the forehead. And all I could do was briefly touch his arm, fumbling with saying “Oh Daddy, we love you” because I didn’t know what else to do I was so numb by everything. Then I had to quickly make calls and send texts, including one to my husband who was outside parking the car, and my aunt and her husband who had been making their way to the hospital already.
Because of the pandemic, there was nowhere we could sit to privately grieve, so there we were outside dad’s room in chairs the doctor and chaplain brought to us for what seemed like hours when in reality it was maybe 45 minutes, during which time everyone took turns going to stand at his bedside, but I couldn’t bring myself to until finally mom insisted.
The remainder of the day was spent making calls to everyone as we gathered at my parents’ house, and I realized it was only mom’s house now, and an emptiness pervaded my entire being that stayed with me for a long time. And my mind kept going back to what dad looked like, over and over. I wanted to so much to be with all of our family and friends, but hardly anyone was able to be with us. Even when we planned out the funeral the next day, and chose to hold it where up to 50 people could attend over a week later, a total of 15 people showed up that date some staying, and some only there to pay their respects. Had things been “normal” I know dad would have had a full room, and my heart ached at the injustice of it all. How it felt like dad had been short-changed throughout his hospital stay and death, and beyond. But, oh, did we send him off well! Dressed him in his best suit with his world’s best grandpa shirt hidden underneath and a beautiful casket with flowers he would have appreciated. Played songs I know he would have wanted me to share. Conveyed stories of him that he would have wanted others to know. His death shocked so many, including my mom, but for me, there was a certain peace and calmness that came over me the day of the funeral that helped me make it then and in the days since. I wasn’t bitter about it, I didn’t blame anyone, and there was nothing but to appreciate the years I enjoyed with dad.
What I didn’t expect after losing dad was to have an aversion to watching or seeing any images or video of hospitals, elevators, and music that he liked. And because I look so much like dad, I even have had an aversion to seeing my own face in the mirror, and haven’t wanted to really be in any photos in months, because when I do, all I see is dad struggling to breathe in our last video chat, and dad on his death bed. It was music that first broke through my grief, though, and eventually I could use elevators again without feeling nauseated. I’m still working through being able to not get triggered by medical settings and of not avoiding my reflection and mannerisms I have in common with dad. I’ve had a few doctor appointments since, which were scary to go to at first, but I can’t yet watch forensic or crime shows or jump at the chance at visiting people in the hospital like I used to. My zest for life came back within a month after dad died, and it wasn’t all that bad to visit his grave the few times I have so far. But now that his headstone is just about ready for us to see, I have the comfort I have been seeking. I take joy in the glimpses of dad I catch in me, in my daughter, and my dad’s family. I even finally dreamed of dad this week, which I totally don’t think was a coincidence. He was a teen, receiving a hug from his baby sister, and in my dream, I was there, like a bystander, as if watching it play as a memory of his. And maybe that’s what it was, as another gift to me that he’s ok, and as he remains at rest from this life, he is in his most carefree state, back to when he had first known mom and was surrounded by his family.
The only other time I started to dream of dad was months ago, and just as he had started to enter a room and looked at me, he backed away and left and I woke up before I could fully see his face. I knew then that I wasn’t ready to experience his presence. Maybe it is crazy of me to think that way, but I’m not prone to dreaming about people I miss, but I AM known for dreaming specific things with a point or things that turn out prophetic and I’ve had premonitions and waking visions before. I don’t choose them - they choose me. It’s why I never have dreamed of my grandparents or friends except my grandma Daphne the time I was about to go through a health struggle, and was given a day vision in which I was at a friend’s beside seeing her with her family when I needed closure after struggling with her death months after the fact. So to have these dreams and visions is a gift I’d been waiting for. My daughter had two dreams, both that held so much meaning and closure for right when she needed them - right when she was missing him, and then after we unexpectedly lost our cat. Mom had a dream of dad too, but it was a bittersweet experience for her. I did have what seemed to be a day vision of dad…right before he died, as if he was searching the room - but I don’t know if he was looking for us, was seeing visions himself, or was finally telling God, “You win.” If anything, that vision was as haunting as my triggers. But now that I’ve finally had my “gift,” I’ve had inexplicable joy, and I just know it was both a God and dad thing, because all last week I was miserable in thinking about how for the first time in my life my birth month was going to be void of any happiness for me. I’m happy to say I can claim that happiness back and be excited! I know every experience from now on will be different, but I know that I won’t ever be alone, no matter where I go or who I’m with or not with. And that’s a beautiful thing! The stars aren’t as dim, and on this Mother’s Day I pray for all who are celebrating with their families or reliving memories of happier times.
In faith and love,
Natasha
