What does loneliness feel like?
Driving back from the hospice every Sunday is one of those pensive periods in my week when the mind wafts away to deep thoughts. With mostly unanswered questions.
Patricia is my nonagenarian friend. She is frail as frail can be. It used to be that we would get her in the main area for her meals. These days, even that has become too onerous for her. Every time I go to see her – she is invariably in her bed, doubled down like an unborn baby, deep in sleep.
Or so I used to think. I have realized over the months that she is often awake but too tired to open her eyes. If she did open her eyes to answer any of my questions or ask me for something, it would be only for a fleeting second. One trick invariably perks her up is when I fish my phone out and show her pictures of our dog. Without exception, she will have that blissful smile in her face.
Today too, she was crumpled up in her bed. Too frail to get up and eat. The staff told me that instead of normal dinner – which for others was soup, salad and rice with shrimp and vegetables – she was just going to have a bottle of Ensure and a piece of chocolate.
The feeding was fairly mechanical and uneventful. I would hold the straw up to her lip and she would take a few sips and pull her head away. A minute later, we would go thru the movie again. And kept repeating till we had almost finished the bottle. She opened her eyes and looked at me. That was her silent way of saying she was done. Switched her up to a piece of chocolate. She readily opened her mouth.
A couple of minutes later, I grabbed a wet wipe from her bathroom and cleaned up her face. She was still tired and had not uttered a single word the whole time. I left the room for a brief moment to call the nurse to put the respirator in her nose. (She needs that help in breathing and I do not have the training to handle that device).
It appeared that she had gone off to sleep. The nurse was rearranging a few of the stuff near her machines. I gathered my stuff and started walking out. I had barely cleared the door when I thought I heard something. The nurse immediately called out – “Roy?”
“Yes?” I had turned around and responded.
“She said ‘Thank you’ to you”.
“Yes, she opened her eyes, looked at you going away and said Thank You”.
A little surprised that she was not asleep, I came to the other side of the bed and bent over to be close to her ears and said “Patricia, good night!”
Taking both the nurse and me by surprise, she held her right arm out.
Thinking about it now, I think she was just trying to wave at me. At that moment though, I thought he was holding her hand out to be held. Involuntarily, that is what I did.
The nurse left soon. A couple of minutes later, I was still there by the bedside bent over holding her hand. It was hurting to stand like that. But my mind was racing thru what was going on in Patricia’s mind. She certainly had more cognitive understanding of what was happening than was apparent with her constantly closed eyes and not much of limb movements.
I decided to come to the other side of the bed and sit in a chair next to it. But I was afraid that she might think I was leaving her. So, gently, I told her “Patricia, I am going to come to the other side and seat by you”. She opened her eyes and closed. I realized that she had understood what I just said.
Letting go of her hand, I quickly switched to the other side, sat down on her wheel chair and held her hand again. I talked to her a couple of times but there was no response. For about ten minutes, I just sat there. Our only company was the gurgling noise of the respirator. All the time I was wondering what was she thinking? If somebody has so much cognitive power left – but has little to no physical strength, what kind of loneliness does one go thru laying in the bed hours after hours, days after days?
I also realized how lucky my parents were. They had each other till pretty much their last day and were surrounded by my sister’s family and my brother’s.
Eventually, I let go of her hand. She did not stir.
I convinced myself that she was asleep. Or was she?
In any case, not to take a chance, I did not even say Good night. Just got up, waited for half a minute to see if she would open her eyes and then tiptoed my way out.
On my way out, I reported back that she had finished her dinner and had gone off to sleep. The staff waved me good bye and I promised to come and see them next week again.
Back behind the wheel, thoughts just kept coming in and out. Perhaps like Patricia’s mind swims into active consciousness and out.
When she wakes up again at night, will she remember that I was there? Will she be looking for me? Or has she realized after so many days in a hospice that she has little say over anything? Even if she was to look for something, she was not going to get it. She is at the mercy of other people’s generosity.
What does one go thru listlessly laying down in the bed at that age when you hit that level of physical inability? How painful is it if the mind is active but the body cannot sustain any activity? What does it feel like to be completely dependent on others? How painful is the transition to that acceptance?
The lights turned green. And I put my attention back to the road as I navigated thru a crowded left turn.
Very touched by this thought-provoking post. Would you be willing to share more about how you came to know and visit Patricia?
Sure, Emily. In short, every 5-6 years, I leave my job and take a year off to try out different things in life. So far, that has included stand up comedy, mixology, running marathons, motorbiking, skateboarding and so on. In 2017, during one of those breaks, I signed up as a volunteer for Golden Hospice. They assign me residents at various hospices. I spend time with them during weekends. You may see some other such stories in the “In Transit” category in this blogsite.
And thank you for your encouragement.