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How my mother’s death made me an advocate for right-to-die laws

I am the mother of two children with Asperger's syndrome. The oldest infact was diagnosed with PDD-NOS at the age of five. He has now been awarded a Masters Degree in Computer Science and his brother has entered a Masters Program in Medi...

It took my mother 7 days to die in hospice because euthanasia wasn't an option

I was my mother’s health care proxy. Since my father passed away, she had made certain that I was listed on her papers as the one who would make life and death decisions for her in the event that she was incapacitated.

She was quite adamant that if she was ever diagnosed with metastatic cancer — she had on going issues with skin cancer — that she would refuse chemo and move to Oregon where she would be able to end her life on her terms. No extraordinary measures were ever to be taken. She insisted that she would always be DNR (do not resuscitate) under those circumstances as well. Living anything but a full life was not something she would want for herself. She just wanted to be kept comfortable until she saw fit to meet her maker.

You never expect to get that call — the call where your mother has been in a car accident.

“Only a few broken bones,” the nurse in the hospital said. “Nothing serious.”

How broken bones in a 78-year-old woman is not serious never made sense to me.

I asked if they could keep her in the hospital until I arrived from New York later that afternoon. No, they told me they wouldn’t allow her to stay in the hospital. Beyond all common sense, the hospital sent her home alone, a 78-year-old woman in a cast who had just been in a car accident.

"Oh she was lucid," they said.

They put her in a cab and off they sent her to fend for herself.

I got on a plane as fast as I could and hightailed it down to Florida.

I arrived at 6 p.m. that evening. I found her on the couch in her home. Her neighbor had seen her arrive in the cab with a cast and ran over to help her. All mom wanted was a glass of wine. No painkiller. She would prefer the glass of wine. So the neighbor poured her a glass and set her up on the couch with the phone nearby to call if she needed help. Yet Mom was still all alone, with one arm in a cast, unable to even get undressed to be more comfortable as she sat waiting for me to arrive.

I knew she couldn’t stay alone in Florida and was making plans to bring her back home with me. We would take care of her.

Ironically we had finally gotten her to agree to sell her house the week before and come move in with one of us. It had been three years since Dad died, and she finally realized that staying in the house wasn’t going to solve her loneliness. She had all the material goods, but that didn’t mean that Dad was going to walk through that front door. In truth, it is hard to let go of the life you built. They had had 55 years together, but Mom finally understood she was allowed to have a life and did not have to live all alone away from her children and grandchildren.

So instead of putting the house on the market over the summer and moving up in the September, she was going to come home with me this past April. Same outcome just a little earlier than she had thought. She was nervous, of course, but I assured her it was going to be all right. That we would figure it out and make certain to keep everything that was important to her. They didn’t call it storage for nothing. Right now the important thing was to get her up to New York and settled. Then we would figure out how to take care of the house and her belongings.

She wasn’t hungry that night. I tried to cajole her into eating something, but no. After a bit, I helped her into bed.

We had fun. She laid in bed and we sat and talked until well after midnight. She was very happy I was there for her and I got her laughing. I kissed her goodnight and went to sleep in the next room.

We woke up and everything seemed fine. She had breakfast, we got the insurance going so we could have a rental car and started the paperwork for the accident, but she had awoken with a black eye.

Had she had a CT scan?

No. They didn’t give her one.

We went back to the hospital and had them do a scan, just to be on the safe side. Besides, my sister suggested, they could also write a note that it was OK for her to fly with a soft cast. We were planning to fly back to New York that weekend, and we didn’t want to get to airport and have any issues if she needed some kind of doctor’s note to fly in her condition.

We went to the hospital ER. She was joking with the registrar. She seemed rather happy and content knowing that there was plan in the works for her future.

The doctor was the same one from the day before and wanted to know why we were back. I told him that I wanted her to have a CT scan, and I wanted to know why wasn’t one done in the first place. Also, she needed a note so she could fly back to New York with me that weekend.

He seemed annoyed and told me that she had told them she had not hit her head. I told them to look at her black eye. They relented to do the scan and away she went. Why there was no automatic CT scan when a person came into the ER with broken bones from a car accident in which airbags have been deployed is something I will never understand.

A few minutes passed and she was returned to the room, and the doctor called me into the hallway.

There was a problem with the scan. They were going to admit her to the hospital. There was a brain bleed, but I should know that all they would have done with her previously is admit her to the hospital and watch the bleed to make sure it didn’t get worse.

Of course, the doctor basically said it was my fault, because when I learned there had not been a CT scan, I didn’t bring her back into the ER immediately.

Suddenly mom started calling out to me that she was gong to throw up and that she had a massive headache. The nurse said she would be there with some Tylenol. I went back into the hospital room to check on her and mom was unresponsive. The nurse taking blood had not even noticed.

“They only told me to take blood,” was her response when I yelled at her that she didn’t notice my mom was not responding.

I ran out into the hall and started to yell. They immediately intubated her and sent for an ambulance to take her to the trauma unit across town. I followed the ambulance in the rental car.

They had me sit in the waiting area outside the emergency room. I think I waited about 20 minutes before they called me back. Sitting in a corner by the window, it was at this point I started to lose track of time.

The neurosurgeon introduced himself and shook my hand in greeting. He showed me the scans. The one from the first hospital and now then the one they just took, less than an hour later in the trauma unit. The blood in her brain had doubled. I can’t really describe it well, what it was like seeing those pictures. The blood was taking up so much of her brain cavity at this point. Sometimes you just know without having to be told, without having a medical degree, that if you love someone with all your heart, you need to give them the dignity to let them go.

Subdural hematoma. Those were the words they used.

She would die without an operation to relieve the pressure on her brain, and it was the only way to know for certain what was causing the bleed, the neurosurgeon told me.

No, there was no guarantee that she would ever regain consciousness, and if she did that she would ever go back to the way she was.

I told the doctor what Mom had said about the chemo and Oregon. He understood.

He spoke to my siblings and my husband. I remember the doctor reminding each of them what Mom had said about end-of-life instructions. In fact, he seemed to emphasize them in each phone call.

We decided to let nature take its course. The neurosurgeon didn’t fight us on the decision. A friend of mine who is a doctor said the way the neurosurgeon broached the subject with us meant the doctor agreed with our decision, that he was certain the neurosurgeon felt we made the right call in the situation.

The neurosurgeon said it could take 12 to 48 hours for my mom to pass. That was how bad he thought the injury really was.

There was hospice in the hospital, but we had to wait for the paperwork and they weren’t certain if there was a bed. There also were no free hospice contract beds in the hospital. It was a waiting game. The head admissions administrator was working to find my dying mother a bed.

It took 12 hours, while I sat with my mother in the trauma unit, and the hospice came through. Meanwhile I watched her slowly fade over those hours. Her body seemed to disappear. There is a life force in a person that you can see. Over those 12 hours I saw my mother’s life force disappear.

During that time in the trauma unit, I sat in a little plastic chair next to her bed, holding her hand and making certain not to hurt her, as she had still had the broken bones to worry about. I talked to her. I asked her forgiveness. I should have taken her back to the hospital as soon as I arrived once I found out there had not been a CT scan done. I told her that I hope I made the right decision, but that this is what I thought she really wanted. Finally, a little after 2 a.m., the hospice was able to come and get her.

12-48 hours. I knew I could do this for that time period. I could watch her slowly die. It would not be easy. But it was something that had to be done. It was what was right for her and what I felt didn’t matter at the moment.

So I sat next to my comatose, unresponsive mother. The woman who was there for me my entire life. The woman who had in fact given me life. The woman who had been my friend, my listening post when I found out my oldest was diagnosed with autism, and my rock in so many instances over the decades that I had lost count. Now I was going to have to be her rock. I was going to be her strength. I was going to make certain that her last wish, no matter how hard it was for me, was carried out.

My West Coast sister showed up the following morning. I had told her not to come. I hugged her.

“Thank you for coming,” I said.

I hadn’t known how much I needed support until I saw my sister enter the hospice room.

My husband was not going to come. I told him not to and to keep the boys in New York. Yes, they are grown, but they also have Asperger's syndrome and putting them into this situation would not be good for them. The situation was so emotionally overwrought as it was, and there was no need for them to see their grandmother like this. I wanted them to remember her as she was the day before, when they talked on FaceTime.

So my sister and I sat next to my mother. The 12 hours passed. The 48 hours that the neurosurgeon said it would take passed.

"They go at their own time," the hospice nurse told us. "When they are ready."

What the powers that be don’t tell you is that “letting nature take its course” is when the person gets no sustenance. If they cannot ingest it themselves, it doesn’t get taken, except for morphine. They give them morphine to keep them comfortable.

The hospice doctor explained that up until 100 years ago, when a person fell into a coma, there was nothing anyone could do. There was no intravenous care, so the person would die. Hospice takes us back to the days before feeding tubes.

Understanding that is very important. Know for yourself if you are ever placed in this situation. Know what to expect. No one tells you this. It’s as if it's taboo to tell the truth of what will happen.

It is very important that everyone understand that. The hospice kept her comfortable. They kept her without pain, or so they said. But how did they know? How did they know she wasn’t hungry or thirsty? They said her brain wasn’t sending signals that her body would want food and water anymore. How did they know that her brain wasn’t functioning on some basic primal level? Yes, her injury was massive. Yes, her brain was damaged beyond real repair, but who had ever come out of such a deep deadly coma to ever tell anyone how they felt, or what they understood?

My sister was upset because mom had always had bad reactions to morphine. She had hallucinations when she was given morphine after surgery a few years before. Some were frightening hallucinations. Some were not. No, they told us, she wasn’t having hallucinations because her brain was too injured. No, they wouldn’t administer a different painkiller since there was no need. But again how did they know?

What they also don’t tell you is that when you have an otherwise healthy person, as my mom was, who comes in with a traumatic brain injury, it can take up to seven days for them to die. Not 12 hours. Not 48 hours. But one week.

So for one week we sat by her side. We slept her her side. We bothered the nurses to distraction. We kept asking the same questions over and over. How do they know? Just how do they know she feels nothing anymore? The nurses told us we worried too much.

We played her favorite music. We brought her dog to the hospice to stay with us. We talked to her. We told her we loved her.

Seven days. Not 12 hours.

Seven days. Not 48 hours.

It was a living nightmare. As if we were in an alternate universe, suspended from time and place. Sartre’s No Exit, only this wasn’t about unrequited love, but about the final act of selfless love from a child to a parent. It was about making the right decisions for the right reasons, no matter how heartrending that decision was for the cognizant.

Then finally it was over. The nurse came in and declared Mom was gone.

We said Kaddish. Kissed Mom good-bye.

Then my sister turned to me and said, “Now we know for certain that Mom is finally no longer in pain.”

Ultimately the question I am left with is why in a world where there are healthcare proxies, living wills and healthcare instructions, do they make it a crime to help an irreversibly comatose person to die? Why is it OK to let those like my mother take seven days to die instead of giving them just a little bit more medication to help them pass quicker and with more ease? It is not the same as with a person who is in hospice but still aware, talking, eating, drinking and able to take in the world around them.

We make the decision to help our pets along in their final hours of need with more comfort and care than we do with human beings. Why is it that society allows us the right to show a greater love and compassion for our animals than for the people in our lives?

Now I know that there are always abuses. Euthanasia laws in Europe are simply horrendous, allowing parents to end the lives of babies born with spina bifida, or doctors helping the depressed or those with Asperger's syndrome to commit suicide. That is not what I am asking. I know that disability advocates are up in arms about euthanasia laws, as the disabled are always the ones to feel society’s sharp edge. The disabled are always the expendable ones when society finds itself dealing with shortages, or when the medical ethicists discuss “the greater good.”

But here was my mother. Comatose. With end-of-life instructions if such a situation occurred. We knew what she wanted. Why did it have to take seven days for her to die? Why was she not afforded the same dignity and respect that I was able to give my Wheaton Terrier and my Labradoodle?

This is what I think about at 3 a.m. when I awake from my dreams and can’t find enough solace to go back to sleep.

Not to worry, mom’s dog lives with my family now.

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