The Way We Die

Most of my experience these last 2 weeks with my grandmother dying were positive. People seem to look at me strangely when I say that, but it is true. I knew in my heart she would die. And I knew I wanted to be there. And so, while I had a few moments of breakdowns and despair, the majority of my experience was purely positive. It was pure joy to be able to care for my grandmother in her last days. It was a gift and a blessing.

She stayed most of the last 2 weeks in the hospital, and that was wonderful. She received good care and was well-liked. She never complained and was always kind with everyone, so I am sure that had a large effect on her care.

We were hoping she would not have to move. She lasted longer than we thought she would - she was stronger than any of us ever imagined in her frail state of 108 pounds.

After talking to many people, it became apparent to me that, for whatever reasons, hospitals do not like people to die there. So, while I know the social workers and administrators tried to stretch her stay out as long as possible, ultimately, she had to be moved to a "rehabilitation center."

I did not want to do this for my grandmother, but I knew she needed more extensive nursing care than we could give her at home with hospice.

The moment I walked in there, I hated the place.

It was a "nice" place as far as that goes. One thing my family does not scrimp on, is care for our family when they need it. We are not wealthy by any means, but we take care of our family as well as possible.

It instantly struck me walking down the hall (my grandmother was at the very end) that this was a place people were sent to die. And most of them were completely alone. It was a depressing place. I would not want to die there.

In her room, we created our own world. We shut the door, listened to music and talked while she was able.

The day she arrived, I had visited her in the morning before church with the children in the hospital. She had moved afterwards and my sister was there with my dad and his wife, so I did not go out again. I knew she was well taken care of.

I came Monday morning as soon as I dropped both children off school, which was at 9am. My father had been there late, so slept in a little.

When I got there, my grandmother was severely distressed. It was a state I have rarely seen her in, expect right before and after my grandfather's death.

I had to quickly compose myself so I did not lose it too.

She had been sitting there since about 4am without her hearing aides, so she could basically hear nothing, on top of being completely disoriented from her new surroundings. We had managed to keep on top of these for nearly 2 weeks in the hospital and it was never a problem.

I asked several nurses multiple times, and no one knew where they were. I searched her room 3 times to no avail, then texted my dad and sister to see if they knew anything. Neither did.

I tried to stay calm while my grandma became more and more upset. I asked her if we could purchase her a new set. She nearly started to cry and said they had to be ordered and they were over $2,500.

My dad called the center and they managed to find them. Apparently it was their policy to hold onto them overnight, but no one was able to tell us that for over an hour.

While we were still trying to figure that out, I tried to calm my grandma by asking what else she needed. She is a very clean woman. (I mean scrubbing until it hurts clean.) They had left her in there dirty for hours. I told her I would bathe her and started to do so. I had done it a few times in the hospital and it is nothing that I mind. But I know it was embarrassing for her. She is very modest. I had not seen her naked before this time. I kept joking with her and telling her it was nothing I had not seen. She would smile. She was always so gracious. She just kept saying, I'm sorry. I didn't want for you to have to do this.

It became apparent that they had left her in an old soiled diaper for some time. She was so humiliated about this I nearly cried. I could not let her sit there like that. I told her I would change it. She tried to stop me but I told her I didn't mind - she had changed plenty of mine. It makes me sad that she died with so much humiliation on her last day of awareness.

The nurse tried to say later that she had checked it earlier, but I have at least 5 years of diaper duty under my belt. I know an old diaper. What I did not know was how to change one on someone nearly as big as me who can not move much anymore on their own. It was a struggle, but we did it. She had to help me by moving around in all sorts of ways. But at least she was clean.

While I was bathing her, the maintenance man knocked at her door. She had been sitting there for 4-5 hours alone after she woke up. She had asked them to turn on her CD. No one seemed to be able to figure that out (it's not brain surgery). So she asked for the TV, to at least have some distraction. They told her they would have to find a remote.

So here I was bathing my very modest grandmother, and this man knocks at the door while she is exposed. She had already specified she did not even want a male nurse. I tell him I am bathing her. He walks in anyway and plays around with the remote.

I don't want to upset my grandmother so I texted my dad. Luckily she does not have her hearing aides yet anyway, but I don't want the negative energy.

So the Director of the place knocks and comes in. She starts giving me all these excuses, as apparently my dad has called her to complain. She then asks my grandmother very condescendingly if she knows when she removes her bowels.

At that point, I lost it. I told her to get out. She seemed stunned and just stood there looking at me. I turned my back to her and told her 3 more times. Please leave, please just leave.

My grandma asked what she had said, but I did not have the heart to tell her.

After that, she quickly went downhill. She pretty much fell asleep except for a few brief moments. One of my sisters wanted to talk to her on the phone from Seattle. As soon as she heard her voice, she perked up and began to speak, with a huge smile on her face.

She died the next day.

What is tragic to me about all of this is that my grandmother had family with her the majority of the time before she died. She was only alone during sleeping hours and then she had nursing care.

But I rarely saw anyone visit the other patients in the hospital or the rehab center. Everyone was alone. And that seems so inhumane and wrong to me.

I know that if I had not been there when I was, my grandmother's care would have been poor - as it was before I got there. It was only after my dad and I became outraged that everyone jumped to their best behavior. And her last 24 hours there were fantastic. But what about everyone else?

The best care should be the standard of care. And where were all the families of the dying?

It is something that has been haunting me - and apparently my dad as well - because he wrote a song about it that he will sing at my grandmother's funeral.