A Bed By The Window

A Bed By The Window

Answering the phone I heard my special needs sister’s name mentioned and a request to speak with her brother. I identified myself and asked if my sister was okay and what was the purpose of her call? The woman asked me to come for a meeting at the skilled nursing facility where she is being treated for deep wounds from being bedridden, to discuss my sister. The weight of the receiver seemed to pull my head down to the top of my desk. These calls have become more frequent and grimmer over the last few years.

It was difficult to understand what she was saying. I assumed she was with the facility and that the call was to obtain my permission regarding Toni’s care. Instead she kept asking me for a meeting. I repeated a couple times “who are you? Are you with San Pablo? Who are you with?”

“We are with Grace Hospice.” She answered. “We are not affiliated with the nursing center. We just returned from seeing your sister and would like to have a meeting with you. Can you come tomorrow? We can meet you at the facility?”

We agreed on 11 AM the next day and then suddenly she brought a doctor to the phone. He briefed me on his examination of my sister and said that if I wanted her to return home she would get the same care she is receiving now. He cautioned me however that if anything went wrong or her conditioned worsened she would be very far from the nearest hospital. The particular risk is if her feeding tube had problems it would be awhile before anyone could get to her.

I thanked him and decided to push any decision off until I saw her the next day. I wasn’t looking forward to going. The visits were getting more and more difficult as there was less that I could do for her. At this stage I would drive the hour only to see her lying in between two other patients, surrounded by curtains and staring with her wide open eyes at the ceiling. The look in her eyes was vacant as if she was blinded from staring at the sun too long.

Dementia is an early problem for Down Syndrome people and hers was compounded by the fact that she had fluid on her brain. Since she no longer recognized me, I would usually stand by her bed and hold her hand.

I would talk to her and look at her to see the resemblances she had to our family. In spite of the fact that she had the face and head of someone with Down Syndrome, she had her father’s thick gray mane of hair, his steel blue eyes and the unmistakable stubby thumb of our mother. All four children had her thumbs.

Being her brother and conservator I would go out to discuss her condition with the nurses and social workers. I would look to see if everything was clean. I would sniff to see there were foul odors in the air. Once satisfied that everything was clean and hygienic, I would try to think of services that could improve her living situation but there were few palliatives for someone who is already so mentally detached from this world.

People with Down Syndrome can’t tell you if something is wrong so I just had to know. I asked that she get a bed by the window. I told the staff that since she is going to be there for months enveloped, by curtains, I felt it is important that at least she sees the sun rise and set. Naturally there were no beds available. I said that in a busy place like this, a bed will be available soon and I would like her moved as soon as possible. I pointed out that a window is her only contact with the outside world and if she sees sunlight she will know what it means. She can at least watch the day change. She will see the grass and the flowers along the wall of the building next door. They assured me that they would move her to a window bed. Three weeks later I got the call informing me that she had been moved beside a window.

There was no laughter or joy coming from her. No tears or pain. Nothing could entertain her. She could no longer verbally communicate. The only audible sounds she would make would be the groans of discomfort from being rolled over the have the bandages on her deep open bedsores changed. Other than that all you could hear was the gentle sound of breathing to keep air flowing through what is otherwise a healthy body.

In spite of her immobility, weight loss and wounds she was not dying yet I still sat with the nurses to make sure that my instructions in her advance health directive were correct and review her condition and treatment. My instructions were that I would do nothing to either advance or delay her death. I told them that she is on her own here and she will go when she is called. I thought that day I can save her. I can only make her comfortable and safe.

I arrived at the facility once more but first I had to sit in the car and collect my thoughts before going in to see her. Between my parents and my sister I have spent a good part of my life in places like this, making decisions about other people’s lives until they are gone. I have made them all for Toni. From emergency rooms, to not approving brain surgery, to giving her a feeding tube to removing her teeth. I challenged two psychiatrists for over medicating her. I would pick where she lived and troubleshoot for her the staff of her home. Often, I was the only obstacle that stood in the way of indifference and neglect.

The weariness didn’t come from giving her care like feeding or doing things for her it came from the strain of making decisions that impacted her life. Since she is so helpless and dependent on me the responsibility is overwhelming.

There is no amount of preparation when a decision has to be made. They generally are required in the middle of the night in a hospital or over the phone with a doctor. I can’t rely on giving Toni options to select from and judging from the look in her eyes, when she is in pain or crisis, she expects me to make it. She doesn’t have or even know that she lacks the capacity to understand what she will have to face. I would rely on the question by asking if it was me: what would I want done?

Once I make it, I have to watch her live with the consequences of my decision. I may never get a clear sign of that I made the right choice. Regardless of the outcome though, I always wonder if I made the right decisions for her but I know that if I am not there to make it for her: someone else will.

Sitting alone in my car I tried to absorb the reality that I was now at another stage in her life. Toni and I had further to go. Somehow when I visited her at Agnew’s in 1969 as a young 20 year old Marine, Corporal I could not anticipate that this encounter with my Down’s Syndrome sister, would carom my life off towards an unplanned direction. I had not seen her in 15 years. My parents gave her to the state and they sent her off to Porterville State Hospital and eventually ended up at Agnew’s for 15 years. During that time she had no family until the day I walked in to visit.

All her Christmas holidays, her birthdays would be spent with 50 or 100 of her closet friends, who were also left behind to live their lives out on the ward. I was her first visitor in 5 years. I was staggered by the knowledge that though we came from the same family our lives were completely opposite of each other. Little did I realize at that first encounter that our journey together would span 48 year’s.

What tired me the most at this moment was not the memory of what happened in the past but the realization that this story was not ending. I could see that she wasn’t at the end but I was rapidly nearing it. Now there was little that I could do except continually drive up and sit by her side for a little while and wait for the next thing decision to be made.

The lobby was the heart of the facility. Patients congregated in wheel chairs to visit, visitors gathered at the reception desks, meeting rooms were full and administrators walked to and from the various offices. The crowded hallways went in different directions. People flowed up and down the main corridor and in and out of the small rooms treating the bedridden. Each hall was full of nurses, aids, dieticians pushing carts, and patients sitting in the halls for extra room and distraction. Walking down one them was like going through a tunnel of sounds and voices. The place was a hive of activity.

I was met by two women who introduced themselves as nurses from Grace Hospice. We entered a small conference room off the main artery and we sat down to talk. Before she could say anything I asked “so who are you? How did you get connected with my sister? What are you doing here?”

They started answering my questions one at a time. They said they were independent of the facility and worked to ensure that patients in facilities and convalescent hospitals get the best quality care possible. Quality of care was the law and their role was to see to it that as much of it that could be provided was delivered. The nurses and the doctor from Grace would conduct their own examinations to make sure the she is receiving the best care. In some cases they would remove all the dressings and start rewrapping her if they thought the treatment was sub-par.

She kept using the word “quality of life”. I had long since not heard that word in a while. Not because people didn’t care but someone reaches a point where there is little you can do but keep them safe and clean until they die. However, she went on to ask me about what Toni likes? I was surprised by the question and answered “Music. Why?”

“We will have someone come up and play some for her.” She answered.

“You have people who just come up and play music for her?” I asked.

She asked me “does Toni have a religious preference?

I responded “no why?”

“We have ministers who will come and pray with her. We have volunteers who just come and hold her hand and pray for her." She continued on about the people that would come to a place like this and make contact with her to provide a human voice and touch for Toni to give her comfort and company.

I sat there astounded by what I heard. I wanted to give her these things but my contribution to her life was to see that she was taken care and not discarded or neglected like she was when she was a child. I did everything I could do but her condition required so much more attention and care.

As I we talked, I paused for a moment and said “Don’t you see the miracle here? Don’t you what is happening here? You are not here for her. You are here for me. You are doing all these things to help me. I am the one that really benefits from your services."

Driving home, I called the owner of Toni’s group home to tell her what had happened and asked her: what could she tell me about Grace? As we spoke, she told me that there is something she wanted to do for me. She said she never sees family come around when people with Special Needs get older. She told me that she would keep an eye on Toni, the facility and the hospice care.

She said she would drive to see Toni today. “If anything happens to her I will call you but when she passes away, I will contact the mortuary, gather her things, make all the arrangements to close out of the regional center and will see to it that her remains are sent to Holy Cross cemetery as you have instructed. Then I will call you when it is all done.”

As she went down the list of all the things that would need to be done, I knew that up and till then, I would be the one to make all those arrangements. It was the second miracle.

The long drive home gave me time to ponder what had just happened to me that day. A great weight was lifted off my shoulders. I knew my sister’s situation had improved and now I was at peace. I would no longer feel that I wasn’t doing enough for her. I would not be alone in providing for her care anymore. Other people were getting involved now to share in Toni’s life and bring to it the love and care that I couldn’t.

I could fight a system, an institution, and make critical decisions that would have a huge impact on her life. I could argue with the doctors, research medical recommendations and fight for her in court but I had difficulty doing the small things like sitting by her bedside holding her hand for than a little while.

I knew it didn’t matter if I held her hand anymore. It was important when she knew who I was but now it was just a hand she needed. It could be anyone’s hand. Just the touch of another human being must let her know she was loved and alive.

We still have a long way go together and there will be more decisions and visits I will make. I learned that I will make them because I need them. I need to see this through to its end.

Over 48 years I have tried to give her what she didn’t receive as child which was love, a family and protection. In our life together she always knew that she mattered and if she needed me, I would be there.

Bob McLalan