love

Saturdays

/ Lori McLeese / 5 Comments

Our Saturdays have a comforting familiarity. Park, ice cream, Hallmark movie. And some days we have interesting tangents. Like today. 

I usually arrive midday. Mom is either in bed, or sitting on the patio staring into space. I step in front of her and call her name, and it takes her a few beats to recognize me. But when she does, it’s the sweetest of sweet feelings. Her eyes light up and she says, “You came!” I know this is a fleeting reaction, and I savor it each Saturday that she still recognizes me. We hug, and I help her get ready for our outing. Sometimes that involves bathing her, sometimes helping her change out of her nightgown, and sometimes reminding her to use the restroom before we depart.

We go to the nearby park, and walk. We used to walk for almost an hour; now our walks are one short loop, about 25 minutes as she slowly, ever so slowly, shuffles. She loves seeing the children playing at the park, and parents are so incredibly generous, encouraging their littles to say hello to Mom. I wish there were a way for me to transmit the eternal gratitude I have for these parents. Thank you for indulging an elderly lady who wants to come close to your child. Thank you for being so incredibly gracious, and encouraging your child to wave or say hello. Thank you for smiling. 

As we finish our walk, I ask Mom if she needs to use the restroom. Usually she says no, and we continue to our next stop, the ice cream parlor. Today, however, she said yes. We walk into the restroom, and she entered the stall. I stand outside the stall, because she doesn’t usually lock the stall, and I don’t want someone to walk in on her. I hear her finish and flush the toilet, and then struggle with the door. Oh, no. She has locked the door. “Mom, can you hear me?” “Yes.” “I want you to slide the silver latch, okay?” Through the narrow crack between the wall and the door, I see she steps back from the door. I reach up over the door and point downwards. “Do you see the latch I’m pointing to?” “Yes.” “Okay, please slide it.” I see her step back and lean against the wall. “Mom?” “Yes.” At this point I kneel on the floor, trying not to gag. My philosophy about public restrooms is to get in and out as quickly as possible. I reach my arm under the door and point up to the latch. “Do you see my hand?” “Yes.” “Okay, touch my hand.” She does. “I want you to move your hand up, up, up, up….” She did, and when she reached the latch, I said, “Okay, now slide the latch.” She stepped back from the door. I wondered what other words I could use to encourage her to slide the latch. I drew a blank. 

I realized I would need to crawl under the door into the stall. I am not a small person. This would mean laying on the floor, of a public bathroom, and shimmying into the stall. I tried not to gag as I laid down on the floor and scootched forward. I inched into the stall and stood up. I slid the latch and Mom said, “Well looka there.” I tried to rid my mind from thinking about what germs were on the bathroom floor. We exited the stall and I helped her wash her hands. 

Mom’s language use has diminished. She’ll start a sentence, and can’t recall the words to express her thoughts. I try to help her, and sometimes it works, and sometimes it makes her more frustrated. Today, when we pulled into the parking lot of the ice cream parlor, she sing-songed, “Ice cream, ice cream, ice cream.” I smiled. I’m so happy that connections are still made.

We returned to her home, and propped up on her bed to watch a Hallmark movie, holding hands with our legs intertwined. Al, her special gentleman friend from across the hall, wandered in. He saw me and smiled. “I wanted to see who was in bed with Sybil!” I laughed, and said it was just me, and he didn’t have any competition. He said he was going home, and would see us later. He ambled across the hall back to his room. 

Vipassana training emphasizes impermanence. The good won’t last forever, and neither will the bad. I try to remember this with each day that I spend with Mom. Don’t get too attached. This is fleeting. And oh my goodness, still how I wish each day could be like this – the recognition, the tenderness, the sweet love. I know it won’t be like this always, and I say a prayer of gratitude. Today was a good day. 

A Life of Love

/ Lori McLeese / Leave a comment

My Bloganuary prompt for today:

What is your favorite photo you’ve ever taken?

It was hard to choose just one. And it was so fun looking through my photo library and reliving past trips and fun moments with friends. But this one is one of my absolute favorites.

Dad and Mom in Italy

This was summer 2015, and I had joined Mom and Dad in Italy for a couple of weeks. It was on this trip that we noticed that something wasn’t quite right with Mom. At first we thought she was joking with us. At restaurants, she would order, and when we were served, she would say, “I didn’t order this. I ordered that,” and she would point to either my or Dad’s plate. We would switch, thinking she was joking. But she wasn’t laughing. When I would get gelato for us, I’d come back with three cones, and she’d insist that she didn’t ask for the flavor I handed her, but one of our cones. And in the evening, we’d talk about our plans for the next day, and less than five minutes later, she’d ask, “What are the plans for tomorrow?”

I took Dad aside and asked if he noticed anything unusual. It was then that he shared she had wandered off while they were in Belgium, and he and the police spent hours looking for her. He was at a loss with what to do. We talked about resources they could access once they were back home. And this picture embodies the life they shared for 60 years, full of love and adoration for each other.

A Letter to Dad

/ Lori McLeese / 4 Comments

Today marks one year since Dad passed away. In some ways, it feels like yesterday that we were in the ICU, holding his hand, talking to him and praying as he was taken off life support. And in other ways, it feels like a lifetime ago. There have been so many moments this year that I’ve wanted to talk to him, or tell him “I love you,” or seek his advice, or give him a hug. For fifty years he was my biggest cheerleader, my rock, my support.

I predicted today might be emotional (and yes, there were many tears) so I took the day off work. Months ago, my grief counselor recommended I think about how I wanted to spend the day. What I wanted to do was spend the whole day on the mountain, wandering in the woods, then having a nice dinner with Mom and we could share our favorite memories. And maybe that will happen next year. When shelter in place orders were given, I thought, “Well, I anticipate I’ll be pretty teary, I might as well spend the day unpacking some of the boxes I haven’t gotten around to and going through all the files.” (Note: In hindsight, this wasn’t really the best way to spend the day.)

For the year since his death, I’ve been plagued with nightmares that I didn’t tell him everything I needed to. Did he know how much I loved him? Did he realize how much his guidance had influenced me? Did he know how much I respected him? I know that he knew I loved him. We said it all the time. We were affectionate. We hugged each other before bed, and said, “I love you; see you tomorrow!” But did he really know what that meant? I would wake up in a cold sweat, screaming, worried that things were left unsaid.

On December 26, 2018, I boarded a plane for Bogotá, Colombia, to visit friends and celebrate New Year’s with them. I had spent the prior week with Mom and Dad, and Dad wasn’t feeling great and refused to go to the doctor. I remembered writing him a heart felt Christmas card (more like a Christmas letter) and leaving it on his desk. When I arrived to Bogotá, I learned after I left he had gone to the ER and had been admitted. I re-booked my return flight to come home early and went straight to the hospital. That was the beginning of the four and a half month journey, ending with his passing on April 14, 2019.

I never knew if he read the letter, as it sounded like they went to the ER shortly after I left. Once back, I asked him why he waited to go to the ER, and he said he knew that I wouldn’t go to Bogotá if he wasn’t well (which is true) and it was important to nourish relationships.

And today, as I was clearing boxes, I found the card/letter I had written, tucked into his day planner. The envelope appeared to have been torn open hastily, it wasn’t the neat slit that was the mark of bills and letters in their household. I re-read the letter, and understood that he knew.

Dear Dad,

I love you so much and I can’t imagine a life without you in it. It’s been so hard to see you in pain and I wish there were something I could do to ease the pain and discomfort that you’ve been feeling. And now I worry that I haven’t told you everything that you need to know – that I love you dearly. That I aspire to be like you – selfless, compassionate, and loving. You’ve been such a sounding board throughout my life – helping me with both minor and major decisions. Your guidance has turned me into the writer I am – one who loves the craft. I admire your patience with mom, and how much love and care you shower her with. I admire your quest for justice and your commitment to equality. I love how you’ve crafted a life that is extraordinary for both you and mom. I love how open you are to learning and curious about the world. It’s been one of my joys to travel with you and mom as an adult. I think fondly about how we rode camels in Egypt, how we navigated through the Seoul subways, how we walked along the Great Wall in China and then ate the soup where we had to crumble our own crackers. And celebrating your 50th wedding anniversary in Vienna was such a treat. It really was magical wandering from market to market, watching the snow fall gently (and not so gently), and listening to the music. You’ve been the best dad – there’s nothing I would have changed, even if I could. Whenever friends and colleagues meet you, they comment on how lucky I am – and it’s true. 

I love you so much, 
Lori

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Saying Goodbye

/ Lori McLeese / 59 Comments

Question: What do all of these things have in common?

  • A bottle of Purell by the front door
  • Protein bars in the pantry
  • A partially filled pill box on the kitchen table
  • Reading glasses on the side table
  • An unopened letter on the desk
  • Protein shakes on the second shelf of the refrigerator

Answer: They will inspire unimaginable waves of grief when you realize that your father will never use any of them again.

Dad went into the ICU on Thursday. And even though he had been in and out of hospitals since December 26, it was different this time. He was in pain, unbearable pain, from peritonitis. When the Emergency Department doctors diagnosed him, I asked if it was curable. They assured me it was.

Except that it wasn’t. And three days later, Dad drew his last breaths surrounded by his wife, his children, and his pastors.

Dad was the epitome of love and compassion. He thought of others and how we could work together to make this a better world. When I was in high school, and questioning organized religion because of (insert myriad of reasons), instead of forcing me to attend services, he asked me what I would like to do to help others. So from then on, we worked the Samaritan Soup Kitchen downtown on Sunday mornings. I didn’t think much of it then, but later I realized what a sacrifice he was making to take me downtown every Sunday morning. He actually liked church. He liked the social aspect of it; he liked the faith aspect of it.

I was supposed to travel to Charleston on Thursday morning for a friend’s 50th birthday celebration. As I was getting ready to go, I went into his bedroom to say goodbye and noticed he was in incredible pain. We ended up calling an ambulance because I couldn’t transport him in my car without hurting him. He apologized, saying that he always ruined my trips. I laughed and told him not to worry about it – there were more important things. On Friday, from the ICU, he told me to go to Charleston, to be with my friends, it was important to celebrate relationships.

One thing he was clear about was that he did not want to be sustained by life support, and he had documented that thoroughly. We had discussed it on Saturday morning before I left for Charleston. His doctors had come into the room and said that if the infection didn’t clear up soon, they would need to remove the Tenckhoff catheter that he used to perform peritoneal dialysis. I looked at them and asked how he would be able to perform dialysis. They said he could revert back to hemodialysis. I shared that that wasn’t an option for him, since his blood pressure was so low. They said that CCRT, the continuous dialysis (which was apparently very painful and could only be done in the ICU) was the other option. From his bed, Dad shook his head and looked up at me with pleading eyes. I told him I knew that wasn’t what he wanted, and we wouldn’t let that happen. The doctors left. I reminded Dad that he was of sound mind and he could make the decision at any point to leave the hospital and we would engage with Hospice at home. He joked that he had never been of sound mind. He also said that if they told him he would have to be in this existence for a month, that wasn’t the life he wanted. I asked him if he would agree to the treatment for a few more days, maybe a week, to see if things got better, and then we could re-evaluate. He said that sounded like a good plan. He told me to be safe, enjoy my friends, and we’d see each other the next day.

So on Saturday mid-morning I went. Early Sunday morning I learned his condition had worsened, so I drove immediately to the hospital, praying the entire four hours I was driving that I wouldn’t get a speeding ticket and that he would survive until I got to the hospital. When I entered the ICU room, my Mom, my brother, and my sister were already there. I was overcome by guilt and sadness. He was fully on life support, exactly what he didn’t want. His eyes were half open and he was gasping for breath. I was gutted.

I leaned over, kissed his forehead, and told him I was there. He opened his beautiful blue eyes and said, “No way!” I repeated that I was there, Mom was there, Greg was there, and Ashley was there. The whole family was there and he was surrounded by love. Again, he said, “No way!” closed his eyes, and leaned back. We talked to him and told him how much we loved him, how much we appreciated all that he had done for each of us and for our community, how much we’ll miss him, how we cannot imagine living without him in our lives. I choose to believe he heard us. Occasionally he would squeeze my hand, or an eyebrow would raise, or a slight smile would pass his face. My brother left to get some sleep before his night shift.

And then the nurses asked to speak to us. I went out of the room. Before they said anything I blurted out, “He’s dying and he’s on life support and he didn’t want that and he’s in so much pain and we have to abide by his wishes and I don’t want him to die and he’s going to and is there anything you can do to cause him to be in less pain?” And then I collapsed.

They tried to tell me I was making a decision out of love. I was honoring his wishes and he was suffering and if we moved to “comfort care” they would have a lot more latitude with what they could administer.

I called his pastor. They ordered drip painkillers from the pharmacy.

We waited for his pastor to arrive. We waited for my brother to return. I checked his phone to see if anyone had sent messages that I could share with him. There were a couple, as well as about 300 spam and marketing messages over the course of one day. I chided him for subscribing to so much junk, then proceeded to read the offers to him, one by one. We laughed, and I hope he was laughing, too.

The pastor arrived. My brother arrived. The painkillers in a drip bag arrived. We said a prayer, holding hands. I explained to him step by step what would happen. I reminded him the first thing he told anyone when he checked into a hospital was that he has a full DNR (do not resuscitate) order. And that he didn’t want to live a life sustained by life support.

The nurses started the painkillers. “Dad, they’ve hooked you up to a stronger painkiller. You won’t feel the debilitating pain that you’ve experienced over the last few days anymore.” They stopped the blood pressure medicine drip. “Dad, they’re stopping your blood pressure medicine drip. Your blood pressure might drop.” They stopped the CCRT process which was cleansing his blood. “Dad, they’re disconnecting you from CCRT. I know how painful this was over the past few days, and you won’t have that pain anymore. This is what you asked for, and we love you so much.” It was 3:33 pm.

I had an idea that when someone is taken off life support, they die. But they don’t. The body keeps fighting, keeps breathing. The heart keeps pumping. We continued to hold his hands and tell him how much we loved him for the next 1 hour and 13 minutes. I was watching an artery? a vein? in his neck, mirroring his heart beat. I watched it slow. And slow. And stop. And I heard a guttural cry. I wondered where it was coming from when I realized it was coming from me. There is nothing that could have prepared me for him drawing his last breath. The tears would not stop flowing as I sobbed, heaving to breathe.

The nurses told us we could stay as long as we wanted. I don’t know if we stayed a couple of minutes or much longer. I do know that when I leaned over for to give Dad one last kiss goodbye, his body had gone cold.