Tuesday, February 24, 2009

A Conversation at Death’s Door

The elevator arrived on the third floor. As soon as the doors opened, the glass door with the words, “Hospice Hospital” caught my eye. I couldn’t avoid it any longer. I had to make the visit to see my sister, possibly for the last time. I had lingered at home a little longer prior to coming and then stopped at the gift shop before going upstairs. I worried about what I might see.

My younger sister had sent me a photo from her cell phone, just two days ago. My sister, her face drawn, mouth open wide and eyes shut, looked nothing like I remembered just two months prior. Her bones protruded from her skin and had I not known she was living, I might have mistaken it for her death photo. Her hair was straight and shorter than I remember and I noticed that her hair color was still mostly intact, with only some gray showing. Still, she looked more like my maternal grandmother, than my older sister. The photo was sent to prepare me for what I would see, probably so I wouldn’t faint upon arrival. I am not very good with these kinds of things. Of all the things the photo wasn’t, there was still something missing. Something that I never realized prior to this, was that she always had a smile on her face. Funny, I had never noticed that before.

I opened the glass door to the Hospice Hospital. The door was etched with the words, almost as if you were going into a fancy spa; the only similarity between the two, might be that someone was there to take care of you, sort of. The hallways smelled of death which was in stark contrast to the fresh baked bread smell that I had in my apartment. I had baked a loaf prior to coming to the hospital in the morning. Not that she could eat a piece, but I brought one anyway. I know from my experience with Dear Son and from all of our hospital stays that sometimes the smell of a home cooked meal would go a long way. And today, well, a slice of bread was as close as I could bring to her.

The hospital personnel was quick to identify me as a visitor. Those were the upright ones. By the looks of things, there weren’t many visitors to be had. The patient doors, all wide open, were of people at various stages of death, all lying in nearly the same position, in the same hospital gown, with the same look on their face. Somehow, they all looked to be the same age, old. It was as if their individual disease somehow accelerated all of them to the same age. Almost like age progression photos, only in real time.

The first person that saw me was the social worker. While I may have had questions for her, I decided to see my sister first. The room was light. There was another person in the bed closest to the window; that lady was not coherent. My sister, lie in her bed, in what seemed like fifty years older than the photo my younger sister just sent two days prior. I would not have recognized her as such, had I not seen the photo. I was hoping my face wouldn’t relay the shock that I felt in seeing her although I am certain it did. Still, I tried to recover and greeted her nonetheless. I tried not to cry when I saw her, but it was hard not to. I am not a cryer. I was so worried I wouldn’t be able to see her before she died and now, well, my wish had been granted.

We had talked prior to Christmas about the, “Do Not Resusitate” (DNR). She had said they were pressuring her to make some decisions. Stubborn as she was, she wasn’t ready to admit that she was going to die, let alone give them orders. We had talked a few times prior but on that day, she admitted that she was tired and was not able to do a lot. The pain was constant and she could no longer walk from the sidewalk to the car. Getting out was exhausting, if at all. I talked about the DNR with her. I told her what I had learned about it from Big Academic Medical Center. She was clear that she wanted a DNR, as she no longer wished to go on, but she was having trouble signing it. They also wanted to start hospice but she had refused. After our call, she contacted them two days later and hospice began.

The similarities between her and Dear Son were striking. I was relieved that her brain was functioning today, although not as well as she would have liked. It was only yesterday that she was all drugged up; they did it purposefully since she fell earlier in the day, trying to use the washroom on her own. Another casualty of someone not staying with her; but there was nothing I could do. She said when I came in, that she asked them not to give her the medication today, because she wanted to be alert when I came, but she got it anyway. Her thoughts were fine but the execution was messy. It was difficult to understand her. She talked fast normally so the inability to speak and trying to get the words out faster, were challenging to understand. At times, she’d close her eyes because the words wouldn’t come out but the thoughts were there. It was like that many times with Dear Son. He’d try to talk to me but nothing would come out.

The patient in the bed next to the window had visitors. The curtain was pulled between the beds so she couldn’t see her, but I had a hard time listening since they were talking. I wanted to know if they were taking good care of her. I wanted to know if they were changing the sheets on the bed and keeping them clean. I wanted to know if they were treating her well and keeping her clean. She said they were. With Dear Son, I was always his advocate, making sure he had clean linens so I could make the bed, making sure all of his needs were met. With her, well, she was on her own. As she lie in her bed, I realized that this was it. She was going to die here. I asked if she missed her bed. I knew how much I missed my bed when I stayed at the hospital with Dear Son and she had been here since the 8th of the month. She agreed. I looked over to the other patient and was reminded of the story of the two men who shared a hospital room, with the drape pulled between them. Every day, the man with the bed on the outside wall would describe the children playing outside, what they were doing in the park and what kind of day it was. He would describe the weather and any other activity that was going on. One day, he died. After they took him away, the other man asked if he might have the bed by the window. The hospital personnel looked puzzled at his request. They explained that there wasn’t any window in the room. It was then the man realized that his roommate, made up the stories each day to pass the time. I shared the story with her, but left out the part about the man who died.

Lunch arrived and she struggled to eat. I offered to cut the food and to help her. She tried to put pepper on the food, thinking it was salt. I quickly realized that it wasn’t her mental capacity that was impaired but the fact that her coke bottle glasses were on the table and without them, well, she could hardly see at all. Someone less observant might have interpreted it as mental decline. Not to say that it would happen, it was just that she was fully present today, at that moment. As we talked, I asked her many questions. When it was difficult, she’d stop and close her eyes, frustrated that she could no longer get it together. I put my arm around her back and told her not to worry. She stopped, looked me in the eye and told me that I really ought to do this for a living. This, meaning care for people in her situation, because, “I was really good at it”. I said, no, that I didn’t have any interest in that. She said I should because I really understand and not many people do. I thought for a moment that I had Dear Son to thank for that. He taught me everything I knew about being compassionate. Even in her dying days, my sister recognized that.

Time went fast. She tried hard to be present during the visit but she was fading fast. She stopped repeatedly while trying to eat her lunch. She talked about how we were a family of fighters, that the disease might get us but that we would fight until the end. She laughed when she said it but there were tears in her soul. She never ate more than a dime sized portion of the entire meal and only one sip of soup. At one point, she wanted to save the bread I brought for her and an hour or so later, she asked to have some. I tore off a soft piece of it for her. The smell of the bread wafted to her nose and she closed her eyes as she took it all in. She said it smelled amazing. She took a small bite and then had some water. Fifteen minutes later, she asked for a paper towel, and spit it out. At least that’s what I thought. I know from my experience with Dear Son, that the smell and a taste of food can be glorious, even if you can’t swallow it. He lost his ability to swallow some time ago but a taste, well, every so often, he gets a taste, and he loves it.

It wasn’t long before our visit was over. I had to get back in time to get Dear Son off the bus. My sister thanked me for coming and told me not to worry about anything. She said I was put here to take good care of Dear Son. I held her hand, kissed her goodbye and left the room. I thought about stopping to talk to the social worker and then nixed it. There was nothing to be learned by reviewing her medical history. She had colon cancer and the cancer was winning. There wasn’t anything that would change the course and nothing I could get involved in at this late date. I wondered if I would regret asking some questions. As I pushed the elevator button to go down, I remembered one of her last questions. She wanted to know if they had cleaned out her place yet. I said no, no one has done anything yet. I told her it would all be there when she got home. I pushed the elevator button to go down, knowing I told her what was probably a little white lie…I knew she was never coming home. And so did she.


The Microblogologist said...

So sorry to hear about your sister, she sounds like a lovely person.


Anonymous said...

Thank you for sharing this very intimate moment.

I am reminded of the night I was called back to Florida (We were on our way home to TN from GA) to be with my Dad who was going...

I spent the night holding his hand and watching him struggle to breathe. They didn't expect him to last the night. Then miraculously at 2 am, he came to... He had two days lucidity then he expired.

It's these moments that are forever etched in our brains... Pure love... that's what it is... pure love...

Hugs, my dear friend. You're a good sister...

Jan's Funny Farm said...

You have a wonderful way of describing events and people. One can tell you are a compassionate person by the thoughts you express.

I am glad you were able to spend some time with your sister.

Poppy Q said...

Dear Dream Mom,
You did a good thing, a good thing for your sister and a good thing for you.

Thanks for sharing your story, and we want to send you a big hug and to let you know that we wish we had a sister like you.

Big bear hugs.

Julie and Poppy Q

canucker said...

Dream Mom, I am so glad you got to go to see your sister. I remember when Joe was alive and my mom was diagnosed with cancer of her esophagus. It was such a struggle to try to be there for her and also care for Joe at the same time.

One time Mom cried when I arrived to visit that she needed me, why couldn't I be there for her. I was doing my best, but still feel maybe I could have done more in her last days.

My mom passed away in Dec. 2005. Joe passed away not 9 months later. It was a very difficult year, losing both of these people who meant very much to me.

Dream Mom said...

Thank you all for such lovely messages. They mean a lot. I appreciate the stories of others who have lost people they love.

Canucker-I feel the same way with my sister. I stay with Dear Son all the time when he is in the hospital-I know you have to be there to give them the care, to make sure they get the care they need and to support them and get them through the long days. Hospital days can be so long. I felt bad that I could not be there to take care of and support my sister like I do for Dear Son. My other sister is bearing the brunt of the stays. I do the best I can, going to see her when I am not working or when Dear Son is in school but it doesn't feel like enough. She is now losing her mind and is very confused which only makes it more heartbreaking knowing that she doesn't know what is going on. I often wonder if she is afraid. I am having a hard time sleeping at night worrying about her and yet, I can't be at two places at the same time.

I could not imagine losing both Joe and your mother in the same year. Your comments always mean a lot to mean because I know you have been where I am and will be. Thank you for taking the time to write.

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