Month: February 2024

A Visit With Mom

I walked into Mom’s room and knew immediately that it was a good morning. Despite her pale color, Mom’s eyes were open and clear, and she smiled broadly at me. “Good morning, Linda!” she greeted me with enthusiasm from her bed. She knew it was morning, knew who I was and was happy to see me. That is not the reception I always get. Thankfully she reliably knows who I am, her daughter, but more often she can barely keep her eyes open, and her speech is slurred – a product of the various illnesses, including dementia, she is living with.

The unpredictability of her condition confuses me. I wish I understood it better. I try to emotionally prepare myself for whatever the visit will bring, but it is hard. The variability also makes it difficult to decide what to do about her care. Do we continue to aggressively preserve her life, or do we begin to let her go? I believe Mom’s life at this point is largely sustained by the medications she takes – a high dose of diuretic, as well as heart and blood pressure medications. On the visits that she is foggy and lethargic, spending most of her time sleeping, I wonder if we are doing her any favors. Although she will never fully be herself, on mornings when she is alert, when she is more connected and engaged, then all the medicine and effort make sense.

On this day Mom’s lucidity is a double-edged sword. We enjoy conversation about our family. She is entertained when I read a chapter from Mel Brooks’ autobiography. She listens avidly to his experiences during World War II, which bring back her own memories. But, on the flipside, she is painfully aware of her limitations. She ruefully tells me that she can’t buy the little things she likes to have for her grandchildren and great-grandchildren when they visit because she can no longer go out to shop. She shows deep frustration when she has difficulty getting up and walking to the bathroom. The effort leaves her breathless. It is a titanic struggle to get out of bed (despite having a hospital bed): to sit up, shift weight to her legs and shuffle the few steps to the toilet takes major exertion. And that is even with the assistance of her aide. Given that she is on a diuretic, the need to go is frequent. When Mom returns to bed she is clearly dismayed by her dependence on others and her inability to be in control of her bodily functions.

As the day wears on, Mom gets more confused. The energy and alertness of the morning give way to weariness and confusion. “Maybe they will send me home tomorrow,” she says to me. “Mom, you are home.” “I am?” She thinks she is in the hospital. She is in the same apartment she has been in for the last six years.

I point to the pictures that adorn the room. I show her the table that sits in the dining area just outside the doorway to her bedroom. She nods but then goes on to tell me about how when she was in the Air Force hospital in Texas after giving birth to Steven, they were in a barracks style room. They had to line up to use the bathroom and, “what did I do?” she asks me. “I don’t know.” “I fainted.” She goes on to tell me a convoluted story about them forcing her to get up, but then they put her to bed, and she heard her Aunt Bess in the hall loudly arguing that the nurse should take better care of her. “She made sure I had a silver pitcher, it wasn’t real silver, it was probably silver-colored but that’s not the point, with cold water. Aunt Bess was something.” She was rambling a bit, I thought maybe she was conflating several different experiences. It didn’t matter – I just listened. Then she said again that maybe she would get out of the hospital soon. This time I didn’t try to correct her.

I was getting ready to end my visit. We had talked about the weather forecast, which called for a snowstorm. I told Mom that I wanted to get on the road before the weather turned. She agreed and told me if the roads were bad not to come back to visit the next day. “It isn’t worth taking the chance.” “Thanks, Ma. I’ll stay safe.”

I had no intention of coming back the next day and earlier in the day she knew that. I was going to my apartment in the city to wait out the storm and then drive the rest of the way home to Albany. Mom knows that my house in Albany is a 3.5 hour drive away from her – well, usually she knows that. Depends on the moment.

I walked out to my car reflecting on the visit.

I know what I would want for myself. I firmly and passionately believe that I would not want to live the way Mom is living. I would prefer to stop the life-sustaining medications, take morphine or whatever would allow me to be comfortable while my heart and breathing ebbed, and say my goodbyes. Let nature take its course. Mom’s doctor has said that it is a legitimate, ethical decision – to stop Mom’s diuretic and other meds, make her comfortable and let her go. Though we have made the transition to hospice care, we have not discontinued those essential medications.

Mom is DNR and that decision was made with her full knowledge and consent – she was quite capable of understanding what it meant when we did the paperwork many months ago. I am her health care proxy, but we did not discuss this current scenario. I can’t in all honesty say I know what she would want. If I did it would make this much easier. I comfort myself with the thought that she does not appear to be in pain. Her activities are severely limited, her ability to engage in conversation is variable, her energy is negligible, everything is an effort…is she taking pleasure in her existence? Sometimes, but at best it is a small portion of the day. What is the right thing to do?

So I confer with my brothers and we decide to stay the course…for now.

There are only two things I know. I don’t want this for myself. And, there is no objectively right thing to do. No matter how much I rack my brain, or gut, clarity does not emerge. I need to make peace with the path we are taking and stop ruminating. One way or another, it will resolve itself in time.

In better days: Mom two years ago on the patio of her apartment

Note: I wrote this painful post because writing it helped me process my thoughts. Instead of having a jumble of emotions and images, I understand myself better. I share it because I imagine others may have gone through, are going through or will go through this journey. I think it is important that we talk about end of life choices. Perhaps it will spur conversation in your family.

A Tourist in My Hometown

Last week was difficult. My mom’s health has continued to deteriorate, and it has presented challenges to get her needs met. Suffice it to say that elder care in this country is imperfect – and that is a generous assessment. We are a family with resources but even with that, it can be hard (perhaps impossible) to find services that match her needs. I feel for folks who don’t have the financial wherewithal or time or knowledge to navigate this terrain. And that doesn’t even touch on the emotional toll all of this takes and the baggage we may be bringing to our decision-making. So, Saturday night, when I could finally breathe, I realized that I had Sunday to myself before diving back in to Mom’s care. And it was supposed to be a sunny day! Not warm exactly, but warm enough. I decided I could be a tourist in my hometown – New York City.

When I was old enough to go from Brooklyn to Manhattan by myself or with a friend, I loved exploring. They used to have city buses that ran ‘culture loops.’ It was an inexpensive way to see the sights. I went to museums, I visited landmarks, I window shopped. I especially enjoyed observation decks – I went to the top of the Empire State Building and the World Trade Center multiple times – they weren’t that expensive back in the day. I loved walking the avenues and side streets, finding interesting buildings and people-watching.

I thought about how I might spend my Sunday. I had read about a new observation deck, The Summit. It is next to Grand Central at One Vanderbilt and stretches upward for 93 floors. The observation area is comprised of three floors and includes an art installation or two. Decision made. I would check this out. I bought a ticket online. It was not cheap.

Before starting my day of touring, I accompanied Gary to the Amtrak Station. Though I had taken the train from Albany several times since the new Moynihan Hall opened, I had not seen it. Somehow when I exited the train in Penn Station and made my way to the subway, I missed the new part. So, this first stop revealed a new sight – a vast improvement from the old, dingy station I was accustomed to. I said goodbye to Gary, he was heading home to go to work on Monday. I would have enjoyed having him join me on my adventure, but there are advantages to not having to worry about anyone else’s preferences.

I exited the station and started walking east and north. I was reminded again that New York City is beautiful. Yes, it can be dirty and gritty, but the parts I traversed were not. The architecture can be so interesting. You also find hidden gems, like this in front of the Polish Consulate on Madison and East 37th Street.

I am also often struck by how the sunlight makes its way through the caverns created by the buildings and casts shadows. The sun was brilliant, and the air was crisp and clear.

My ticket was for 12:00. When I arrived at One Vanderbilt there was quite a long line for the noon entry. I should have anticipated that it would be crowded – it was the weekend and it is New York! Somehow, I had forgotten about that. They had it well organized, with sufficient staff shepherding us through the process – the line snaked around kind of like it does at Disney World. We had to go through security, too. They issued booties – a good portion of the floors up top are mirrored and they don’t want them to get scuffed. You aren’t allowed to wear stilettos – not a worry for me since I’ve never worn a pair in my life! They also provided sunglasses, they warned that it was quite bright up there, but I had my own. It took a while to get through the whole process and I wondered if it was going to be worth it.

The final hallway before the elevator is darkened and there’s dramatic music playing. I guess they are trying to play up the excitement. I could imagine it being a bit scary for young ones. They also warn you if you are sensitive to flashing lights or loud noises that you should tell the staff.

Finally, I got on the elevator and we flew up to the 91st floor.

It was worth the wait. The views are stunning. The mirrored walls and floors create a wild, pixelated scene.

Though it was likely designed for the Tik Tok generation, I loved it. There were young folks making the most of it, creating what I am sure were super cool selfies or portraits of partners or friends, but I was surprised to find that it didn’t annoy me. It was interesting. I was mostly focused on taking in the vistas and people were considerate. They took their pictures but kept moving so you could get to the windows. Since the air was so clear you could see across Brooklyn, Queens, New Jersey, Westchester. You get a full appreciation for New York Harbor and the waterways that flow from it. All I can say is wow!

The art installations were cool, too. One room had mirrored balloons floating around. This was designed by Marie Kusawa and I enjoy her work – so whimsical and fun.

Naturally there were opportunities to spend more money – but you don’t have to buy anything in the gift shop or the café (there is also an open air terrace where you could bring the drink purchased at the cafe). You don’t have to buy the photos they take. But, there is no denying that it can get expensive. The base price, just to take the elevator and walk through the three floors of observation areas and installations is $42 for an adult. It was worth it to me.

There is a glass ledge you can step out on – they take a picture of you there. I bought this one. I tried to take my own photo, didn’t come out nearly as good.

It was a great day. Accomplished just what I needed it to. Now I will get back to the real world.