Faded Roses and Extraordinary Measures

“Delta Dawn, what’s that flower you got on
Could it be a faded rose from days gone by?”

– from the hit song by Alex Harvey and Larry Collins

I knew her socially for many years. After all, she raised me. After I moved away, we kept in touch, as one would expect of a loyal son. One of these people who have it all: brains; talent; common sense. A devout and devoted human being. Her home was the meeting point for friends, family, neighbors, and anyone who was in need of a meal. Her idea of happiness was when two of her nephews would show up, unannounced, with their girlfriends and a couple of acquaintances. She would get the music started, and bring out drinks, and run in the kitchen to come out a half hour later bearing a delicious meal. She worked full time, and raised a family, and dealt with a grumpy husband, and you could never tell that she had no time to spare.

When my father got sick, she cared for him at home. Again, any time that I spoke to her or visited she acted as if this was just another day, the same as when she experienced the good old days. When he died, she chose to stay in the big house, because she loved her yard and her flowers, and her neighbors were the same as family.

It was not long before she began to fade. Maybe because for the first time ever she was alone; maybe because she finally had time to realize just how difficult it had all been. Her neighbors saw her dropping trash in her yard. The flowers did not do well. The roof began to leak, and she did nothing to fix it. One time she went to visit one of my sisters in the States and she got lost in the Atlanta airport.

The siblings got together. Lawyers were consulted. One of my sisters obtained a power of attorney.  

The house had to be sold. She was told that she would be in the States for an extended visit with her kids. One of her daughters would be the first one to host her at her house. 

Again, things did not go well. She would go out for walks without telling anyone, and she would get lost.  Her angelic temperament gave way to frequent bursts of anger and irrational behavior. The devout, saintly woman frequently mentioned sex in a vulgar way.

We met again. If she got lost when the weather got cold, she would not survive. Phone calls were made. There was an order of nuns nearby who would take her in. She loved to go to church and to say the rosary. She enjoyed the company of priests and nuns. She was moved into the convent. That evening she struck a nun. She had to be moved out. 

There were more meetings among her brood. None of us wanted her to be institutionalized.  Each one of us thought that for sure mom would do well when we gave it a try. There began a round robin of stays at each one of our homes, some very brief, some of longer duration. In the end we had to admit defeat. A nursing home that specialized in dementia care was retained.

And another. And a third one. In different cities; it did not matter. There was always an issue. There were phone calls from the nursing home staff at all times of day. The places smelled; the food was unappealing; the expense was depleting her savings. Even tough she had a master’s degree from an American university, she stopped speaking English. The staff had no way of communicating with her. She stopped showering and brushing her teeth. They had no way of forcing her.

We met again. One of us suggested a nursing home in our homeland. At least language would not be a barrier, and she would get the food that she liked. Several places were looked at. We chose a residential facility that would make her feel as if she were in a house. They had a garden. There were only five residents.  She would understand Spanish and eat rice and beans every day.

I met with the facility’s director, and the doctor who would be responsible for her. I expressed her children’s wishes: there would be no hospitalization. No extraordinary treatment.  If she developed an infection she would be made comfortable. I sensed an air of resistance.

“We will need you to sign a notarized statement.  We will need a copy of the power of attorney.”

Of course.  Done.

“This is very unusual. Many things can go wrong.”

I know. I’m a doctor. Keep her happy; when the end comes, keep her at peace.

Papers and more papers were signed. I left for Saint Louis, two thousand miles away, not knowing for sure if she would be fine; if I had done the right thing.

There were phone calls, but not nearly as frequent as they had been. Whenever family or friends visited they told us that she looked happy and clean. She rarely recognized anyone.

One day I received a phone call. She had developed a fever. She had been taken to the hospital. When I was able to talk to the emergency room they told me that she had been sedated because she had resisted the placement of a catheter.

Let me talk to her doctor.

After some delay I spoke to the same man who had witnessed the “no hospitalization” conversation.

I thought that there would be no treatment of infection.

“She looked sick; I had no means of doing any tests where she was.”  I could tell that he was nervous.

You had a piece of paper that said no treatment of infection.

“These are difficult decisions; I had to do what I felt was best.”

You placed a catheter in her. The most prudish person that I have ever met. You have violated my mother. She probably thought that she was being raped.

“We needed to get a specimen…”

You needed to keep her safe and pain-free. You failed on both accounts. Do I need to get on a plane and take her back, or will you folow the wishes of the children who love her?

She was taken back to the home the same day. Without a catheter. 

Three weeks later I got another phone call.

“Your mother has stopped eating. We need to place a feeding tube.”

The hell you do, I felt like saying.  But this man was two thousand miles away from me, and he was in charge of my mom. I better be nice.

You cannot place a feeding tube.  You do not have my permission, or that of any of my sisters.

“If we don’t do this she will die.”

And so will I. And so will you. When our time comes.

“I need a signed refusal.”

The fax is on its way. I am getting on a plane by tomorrow. There will be no tubes attached to her when I arrive. Do I make myself clear?

Silence.  I decided that I had scared him enough.

She died that evening. I delivered her eulogy at the church service. I spoke of her love of flowers and music. We sang a few songs. Everyone present told me that this was the essence of her being: joy and beauty.

Her flower had faded. Her days were gone by. And yet… There was enormous pressure placed on us to keep her going. She had five children: two doctors, an attorney, and two college professors. Had we not had the level of education and medical expertise that we have her life would have been prolonged, at tremendous cost to society and unmeasurable pain to her and her children.

The owner of the home wanted to continue to receive a monthly check. New residents who pay on time are hard to find. Her doctor received a monthly check from Medicare, a nice check, for spending a few minutes each month with her. This is called capitation. The Medicare HMO’s use this form of payment to simplify paperwork. The hospital was paid handsomely for helping to violate her. There were lawyers ready to pounce if anyone had been unhappy for any reason.

How can we be sure that our faded roses are allowed to die in peace? There are so many people and institutions whose livelihood depends on planting just a tiny seed of doubt on the responsible family members; just a kernel that suggests that maybe they are not doing what is best for that person who means more to them than anyone in the whole world.

I am not saying that these are easy situations. Some families are pure hell to deal with. Many times siblings are at open war with each other and it is difficult to get one unanimous opinion.

But these are our parents; the people who made us who we are. Shouldn’t all of us agree that their welfare comes first?

Shouldn’t we respect the faded rose?

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This Post Has 5 Comments

  1. lolaroig2013

    In those instances we as responsible family members make the best decision at the time and circumstances. It is very difficult to deal with the memory of an extraordinary mother, and the reality of her state of dementia. I lived part of this with my grandma…when she died although I was relieved, I started a very deep mourning…that took me years.

  2. That would/is a very hard decision you are asked to make regarding someone so very special to you. You are at a very emotional time when you are asked to make such tough decision. When we were asked to make such a decision about my Dad it was tough. Mom and I had never talked about our feelings about this. I remember telling her that I could ask for no life support but it would very hard for me to tell the doctors to disconnect life support. I cannot explain the difference, but that is what we did. He was already unconscious and had not recognized me for months. His quality of life was over for some time. It was a relief for Mom but she missed so very much. Actually she died very shortly afterwards.

  3. Cathy Carmody

    Similar in many ways to my experience with my own mother.

    1. Betty

      Each of us really need to have an Advance directive. Hopefully the family and the Dr. will follow our wishes. We really need to get our “ducks” in order. I feel it’s the loving thing to do for our loved ones.