As many of you know, I left nearly two weeks ago to be by my sister’s side as she was dying. She passed away on Friday, May 29, 2020. which is Pentecost in the New Testament. I don’t really understand the connection, but her dear friend she celebrated the tradition each year with her, called it to my attention. Over the years, They embraced and began celebrating many of the Jewish festivals and traditions, as taught by her Christian Jewish friends, so it was fitting that that was the day she would die.
Today, I went through some of her old pictures and I will sprinkle them throughout my story. Click on them for more info. Her art and some of her stories are in blog posts I’ve done in the past, so if you ever have a chance or time to go back, and some are way back, I encourage you to do so. I hope you will bear with me, while I share how my trip went and some of the feelings I experienced.
I went to be at my sisters side because she was at mine when I needed her most. I have to say, it was the hardest thing I have ever done. It doesn’t even compare to how I felt when my parents died. Over the years, my blogs have shared bits and pieces of our childhood and the abuse we endured growing up, so their passing was different. It was perhaps one of relief. We knew that mother’s mental illness would be cured and that dad’s judgement for his actions would be in God’s hands. They were still our parents and we loved them despite themselves. We appreciated their good attributes and tried to focus on those and that part of them that made us who we are today. To be honest our feelings vacillated often. We would often remind ourselves to stay positive. She and I worked as a team to take care of our parents as we felt a Christian should.
No, my sister’s death cut deep. If she had not come up to help me care for our ailing parents, I might not be here to write this blog today. She was my rock and my lifesaver. I loved her deeper than I can ever express. Surprisingly, I am composed for the moment as I am sharing this.
I hope you don’t mind but I’d like to share my trip experience which went as follows:
When I spoke to my nephews the doctor had stated, she might not live through the weekend. I was in a quandary because of Covid-19. I vacillated all day. I did not want to be sitting in such close proximity to people in an enclosed airplane cabin which recycles and blows back air from throughout the cabin. I didn’t know what their process was or if it would be safe. I get sick every time I fly, so I know I’m inhaling germs that recirculate. My daughter reassured me that her flight left seats open between people, so it wasn’t until evening that the decision was made. I asked my friend for buddy passes. She responded instantly. However, because of Covid, flight schedules were considerably cut and my choices left me with either leaving my house at 4am for a flight leaving at 6 am and not arriving to my destination until after 9 PM, with a long layover in Seattle or leaving at 11:30am, laying over in Seattle until the next day and arriving the day after that, the same time I would have arrived had I left at 6am, only a day later. 36 hours! So, I had to explore other options. Fortunately, I found another carrier with a flight I could afford that would not leave me in Orlando but get me where I needed to be without hiring an Uber for the rest of the way.
I arrive at the airport and I was relieved that it looked pretty empty. My goal was to get to my sister right away. She was there for me when I needed her so I had to be there for her. I was early as I wound my way through the terminal and sat down. Social distancing was not a problem. Yay! That, however was short lived as more and more people arrive. They announce this will be a full flight. I’m understanding that to mean with the extra seat in between. WRONG! It was full.
They announce they will not be serving food but we can pick up a sack on our way in and we are to leave our masks on except to eat. For real? The two people in my row take their masks off and I thought I overheard the man next to me say, he’d been in an area that was questionable. UGH! No way in hell is this mask coming off. Years ago when I worked at the health department, I was fitted with an N-95 mask specific to me, so I was fairly confident I would be okay. It is not like the ones today but it fit extremely well. The problem was that it had been in it’s package for six years. On arrival to Charlotte, one of the straps broke, breaking the seal. I put a spare one on over that and it kept it in place. To be honest, it was horribly uncomfortable and I hated re-breathing my own air for 8 hours. I was extra careful too because there was a chance I might not get into hospice being from California. Despite my good intentions, near the end of that flight I looked over at the passengers near me and they were all sleeping with masks on, so I sneak a drink and a couple of bites of pretzels or some nutty thing. By the time I got to Charlotte, I was parched and hungry. Not starved, but at my age I never let that happen. I rationalize to eat when I’m not hungry so I don’t bonk later. Before my next flight I bought a sandwich, found a safe place, ate and drank all my water.
My next leg had delays. This time we each got a row to ourselves. The second officer comes out and tells us there are creaky boards in the back deck and some lights going off. For real? The girl across the way wasn’t sure she wanted to stay on board. I’m worried and I’m getting antzy that I’ll never get to my sister in time. I feel like screaming, “my sister is gonna die before we get there” but I don’t, then I debate telling everyone my mission and starting a prayer vigil, but that’s not my style either, though I sometimes wish it were. I’m sure some of that comes from all those years as a Jehovah’s Witness getting rejected for our door to door ministry that’s made me gun shy. I do have faith and I do share scripture, but not like others might. We lift off, finally and I text my nephew with our new ETA.
I was so afraid I wouldn’t get there in time. I let my nephew know, since he’s picking me up at the airport. He said, no worries, he’s taking me straight to her, which isn’t far and open 24 hours. I feel better. My nephew was worried they might not let me in because he’d heard that folks from four states were prohibited. New York, Washington, California plus Connecticut. I’m thinking, yeah, I’m from California, but there are no incidences in the area I live in and I don’t go into the denser areas. I hadn’t been anywhere populated in months, so I have my argument ready.
My sister was my go to girl. She’s the one I talked to and most of the time with no judgement. Sometimes, my brother and I would roll our eyes though, because she could be at times quite self righteous… no, just coming across that way. Now my other sister, she uses scripture for everything and talks in scripture, which I find annoying. Maybe she thinks we’d forgotten everything we ever knew or perhaps she has nothing else to say and finds that a way to connect, which I believe may be the case.
I have step siblings who’ve been very supportive and encouraging as well. One has been surprisingly reasonable and I call attention to it because she can be a little like sister #2. Oddly, for some reason, amid all the updates I send them, they start talking about their cats, or barbecues and recipes. Let me explain. I have two major chat groups I’ve formed for getting updates on my sister. This saves the nephews. One are the siblings, the other are my children and one adult grandchild. Then there’s my brother who would go crazy on the group chat. And, one for sister #2, since any news in the group chat would warrant incessant phone calls. Sister #2 is on the autism spectrum, so communication is handled differently.
My kids on the other hand start joking in a sick sort of way. They love their aunt very much. She is their favorite aunt, but when I told them there’s an off chance I might not get in the hospice center because of where I came from, my daughter, the nurse asks if they have the quick test and then says something like, “they’re all gonna die anyway”.
I exclaim “Tina!”
My son, who tends to be a bit stoic say, “I thought the same thing Tina”
My granddaughter, boy do I love that girl, says “haha, that was funny” “terrible but funny”
Mr. Stoic follows it with “Robert Heinlein said, “people laugh because it hurts too much to cry”
Yes, its true. I know my kids meant no disrespect. They are hurting too. They hurt for me, they hurt for Di and for their cousins. I get it and in the next few days, witness it. None of us were ready for this, yet over the past few months we’ve had to make ourselves ready for this eventuality. I think deep in our gut, we knew.
I was thinking how just a few years ago, Diana and I were each other’s soldier while we cared for our dying parents. Mom in 2009, Daddy in 2011. It felt like so long ago, another space in time. We parted in 2014, yet we talked nearly every day for the first two years, then it became once or twice a week. On a rare occasion, we’d skip a week, then we’d pick it up again.
We tried weaning ourselves of being so dependent on one another. She was doing a better job of joining groups and making friends than I. I had a harder time of doing this even though I had always thought of her as the dependent one. She needed me, but I think I needed her more. What she had a hard time with is connecting with her kids. She admired my time and relationship with my kids. I was more open about their foibles and they had their fair share, but to me her boys were perfect and maybe so did she. I saw them as successful in their careers, while my kids took longer to get off the ground. She had these two stud muffin, gorgeous sons and she couldn’t get close to them. She never said, it but I felt it. For a long time I thought it was them, but it wasn’t all them. I see how close we’ve become since all this happened and we’ve talked. I had observed this before. I remember how when she first came up to live with me and help, there were moments of miscommunication or lack of. I’m guessing she had moments of feeling unworthy so it makes sense, it was easier for her to chat and make friends with strangers. No risk there. She loved her boys and I believe they loved her but I think they had a hard time bringing it all in together. At first I thought that was why she didn’t get the help she needed in time. No matter how much I encouraged her to reach out to them, she didn’t. Help came when her grand daughter noticed something wasn’t right with her Nana, when she went over to help her with bookkeeping, because her eyesight had started to go.
So I believed, it passed, she didn’t get the right help at the right time. In speaking with her son, it appeared that early on if she’d gone for help, it still might have been missed. As it was, her symptoms may have lead another doctor down a rabbit hole.
The facility she is staying in is immaculate. I fill out the questionnaire, they take my temperature and I go in. It’s after 11pm.
We go into her room and she is breathing steadily. I marvel at how young her skin looks. No wrinkles. But she’s gaunt. There is nice soft spa music playing. Her son said, someone had brought that in. It was perfect. I talk to her, tell her about my trip and all the chaos going on around her. There is no recognition, just a lifeless body. It is now May 21. 1 AM I tell her I love her and miss her. Around 2am we leave.
The next day, after little sleep, we go again. I go over all the fun times we had. A little past 1PM, we decide to grab a bite. As we head out to the parking lot, the director runs after us and inquires about the sister from California. She apologizes for not having gotten back to my nephew right away. She tells him California, New York, Connecticut and Washington are prohibited. She asks when I would get there. I hesitantly tell her, it’s me. She asks if I’d already been in. I say, “yes”. Well, because my sister is so grave, she would make an exception. Uh, I’ve already been in there we’re thinking.
I reassure her that the area I’m from has few cases and I took extra measures myself, given where I planned to be. So, she’s okay with that. Perhaps she’s unaware that her forms only ask about foreign travel, exposure to Covid – 19, temperature and cough. My answers were “No” straight on down. Oh, well.
Each day from there on out is the same. Every other day a doctor comes in and every other day a NP. The doctor tells us on Friday the 22nd that she’s hanging on but did not expect her to survive the weekend. The NP tells us this is her favorite room because of the nice music. It makes her feel like she’s at a spa. We tell her Diana was a massage therapist, so it’s perfect for her. The nurse says no wonder and agrees. The second day I go from sitting by her bed to the couch and notice her birth date just happens to be stamped on her bed. It is a yearly inspection sticker, but…? I start to say something and her son says, “yeah, we know”. Huh.
So here we sit by her bed waiting for her life to end. I recount stories of our childhood and we share stories of life with Diana. The teasing her boys used to give her… what is it about boys teasing their mother? I see hubby doing it to his mom all the time. He is still doing it as a grown man. There was so much these boys didn’t know about their mother, but only one is here to hear the stories.
Each day there are minor changes and each day they’d level off. On Saturday though she starts to gurgle. I guess they call it the death rattle? They gave her an injection and we thought this is it. When it increased, I lost it. When my step mom got it, I thought it was because she’d had emphysema from all those years of heavy smoking, but the nurse explained we might see fluid being released from her lungs even though Diana never smoked a day in her life other than maybe one time behind the house as a teen experimentally.
After awhile, I apologized to the nurse and said we had to leave. I couldn’t do it. She understood and reassured me not to worry, I would not be the first nor the last to do so. That night I didn’t sleep feeling guilty I’d run out on her like that. At the same time, it seemed awful waiting for someone to die. We expected a call that never came. The next day, the gurgling had gone away. Then her gaps in breathing increased but Sunday came and went and she was still there. When the doctor came in Monday, she shook her head and said, she had a strong heart. They referred to the gaps in breathing as apnea. I’ve had occasional sleep apnea and that isn’t any fun at all. My son calls and his little girl, Maggie May wants to talk to her Auntie. She’s four, doesn’t understand but wants her to get better, so I put the phone to Diana’s ear and Maggie May proceeds to tell her about her unicorns like only a four year old would. I take the phone up and start to talk to my son, when Diana starts this continuous moan. I hang up and my niece in law calls the nurse. She’s given a shot and it subsides. A couple of days later her breathing gaps increase. The doctor says, she shouldn’t be here and I want to pop her one. In a way, I wish she wasn’t lingering. It was painful to see how thin she was.
May 26 Tuesday. Something felt different and I didn’t want her to be alone. Since I’d been there, three people had come and gone. The nurses and staff are wonderful. I decide this is where I want to come to die. The room across the way is now empty. I let my nephew know I’m not coming home, but they tell me it didn’t matter what time, they would leave the light on in case I change my mind.
When I left my home in California, I really wasn’t anticipating staying away so long. When I left the weather in Florida was 91, it cooled off a few days later and add the fact that her room was air conditioned, I was freezing to death. My light linen pants and short sleeved shirts weren’t cutting it, so I brought in blankets. Eventually I bought sweatpants and sweatshirt at Walmart.
That night, they bring someone else in across the way and she is wailing and moaning as well. That’s when I noticed Diana moaning. I close the door. I call the nurse and tell her, but I hear them saying the person across the way had vomited, so they’re fighting to keep her from aspirating. It is now night and the staff is lighter. Even so, someone comes in right away to give Diana her shot. They are quick, but the nurse across the way calls for help. Fortunately, there is a male nurse on duty. Later, when the door is opened briefly, I see them walking a tall, large, (not fat) woman. There are several interruptions in the night and I’ve not slept hardly at all. When morning comes I shower and put my same clothes on.
At some point, I realize my body feels like it went to war, so I decide to go home. She’s somewhat stable and my nephew will arrive shortly. At this point, we have been staggering visits. I’ve still not seen nephew #2. I ask if I might see him, but no, he’s too busy with kids and work. Those words were often my sisters excuse for why she didn’t spend more time with them. Work and kids. It always upset me that she wasn’t being included in that dynamic. Nana’s can watch kids and love spending time with them. I didn’t know how much of it was her or them. I learn later, he was struggling over the fact that he had no solutions for her condition. He has a strong science background and a professor at the college, so he was in a quandary over what happened and why. The thing is, and I knew in my gut this is true, when you “play” with the brain, anything can happen and the why can sometimes be elusive, to never be understood or discovered. I get it. He was also hoping for a miracle. I guess we all were.
Before I left, a new nurse had come in to administer her pain med. Over the last couple of days, because of the moaning, her meds would be upped. However, her heart was still strong and her urine clear. The nurse says it tends to get darker near the end.
I slept a good part of the day. I just couldn’t get my strength up after my previous night. I realize that despite my good intentions, I just have to understand my limitations. So far Diana has disproved every prediction they’ve made. No two people die the same, that was the only verifiable truth. We all die differently. I wondered how much longer. My family and husband have been supportive. Everyone constantly grateful I could represent them.
At one point on the first Friday I was there, my husband tells me his brother, who had just had a quadruple bypass just before Diana went in for her surgery was having to get four stents in. His arteries were already calcifying. I fretted that day that we would lose them both on the same day. Then, if that happened it could start a chain reaction. My mother in law would be devastated, her husband at 94 would get upset for her and our whole house could fall. As it turns out, the stents were put in and he goes back to do two more in a month. So far, it looks fine.
Thursday May 28, My nephew and his wife stayed with me most of the day. Even though they only allow two visitors at a time, they gave us a pass. We apologized to one nurse who sweetly says, “What? I don’t see anything” We were grateful. I had my reservations about leaving Diana that night, but I knew I couldn’t stay the night again. She was different, but I had to trust.
In the morning on Friday, when I came in, I sorta knew. Her eyes were veiled and it was like she was already gone but she was still breathing. My nephew came in a little later. A couple of hours later they changed her position. My niece in law comes in to switch places with nephew but he doesn’t want to leave. He feels it too. When she starts to assure him it’s okay, she doesn’t mind staying, I look over her shoulder and say, “She’s not breathing”. It takes a moment for that to register. I look at the clock. 11:37am. I get the nurse and she verifies that yes, she has passed on.
For ten days, I talked to her. The last two days I prayed over her and told her how much I loved her. How I didn’t want to see her go but that I knew she’d be okay and better soon. I asked God to take good care of her as I knew how much she trusted he would.
I did research. I learned that the first to go is the brain, but hers was pretty much already gone. The last MRI showed her frontal lobe completely dark. Then each major part takes turns. Despite how strong her heart had been and the other parts of her body that hung on for so long, there was no chance of any organ transplant unless they were in the hospital. Hearing is the last to go. Her urine diminished but never changed color. The skin on her limbs did mottle hence my biggest clue she was close. When they administered that last dose, she cried out. I asked why. The nurse said, every five days they have to change the portal. Hers had been changed last night, so yes, she probably felt it initially but only for a moment since they’d given her a pain shot. She went minutes later. When her death was confirmed I bawled. My niece in law bawled. Nephew calls his brother who comes running. He had been visiting most nights after the kiddos were tucked in bed. I felt bad for his kids, that they would never really know their Nana. The other grands were in their late teens, his are only two and four. He said his goodbyes. By then we girls had regained our composure. Son, #1 had been hugging us both while remaining strong. Son #2 also hugged me, but neither shed a tear.
I remember when parents died, we didn’t cry until two weeks later. I understood when there were times #1 son wouldn’t respond to my chatter, that it was how he was keeping it together. Sometimes, I can’t talk either. Sometimes being alone is hardest.
I rushed to make my return flight home so that I wouldn’t be an added burden to my sweet sisters#1 son, should I completely come unglued. Our mourning was derailed when we heard on the news about George Floyd and all that mess. For a moment I thought Diana why couldn’t I have gone with you? I don’t want to be here anymore.
Oh girl, if you only knew what has been happening while you were sleeping and now are gone. We would have had so much to talk about and analyze. We still dissect these events and make it all better. I did talk to her today, but she didn’t answer.