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Fading Away

Michael Crawley - Saturday, November 26, 2016

Jim Haley pushed the doorbell for the third time, and guessed correctly that his sister was not wearing her hearing aids. He waited for a couple of seconds and then rapped forcefully on the door. After a few more moments he finally heard noise from inside. Slowly the door was unlocked and opened slightly. Jim watched with amusement as his sister’s face peeked out.

“Susan, you couldn’t hear the doorbell could you?” He gently admonished her.

“Well, I’ll put them in now that you’re here. Usually there’s no reason to wear them.” Jim followed her into the living room, and glancing around he thought about how the inside of the house had not changed in years. It was obvious that this was the home of two older women. The furniture, the wall paper and the curtains all gave the impression of a time gone by. Even the TV in the corner looked like an antique.

“Where’s Rebecca?” Jim asked loud enough for his sister to understand him. He saw Becky’s crochet kit laying in her favorite chair. That was the spot where she spent most of her waking hours. He always referred to it as her nest. He watched Susan put in her hearing aids.

“She had a cup of tea, and now she’s in her room taking a nap.” Susan gave him a look of concern. “The last few months she has seemed preoccupied or worried.”

“What do you mean?”

“I didn’t mention it before because I didn’t want to worry you, but she’s really irritable and she just seems sad. It’s hard to explain, but it seems to be getting worse.”

“Maybe it’s time to take her in for a checkup.” He said. “At her age you never know. It might be nothing or it could be something that needs looking after.” Rebecca was the oldest at seventy-three. Susan was seventy-one, and Jim was sixty-seven.

Susan’s tone of voice conveyed her worry. “She just hasn’t seemed like herself lately. It’s hard to be specific, but she seems distracted. It’s as if something is not right, and it’s bothering her.”

“Do you think she’s in any pain or discomfort?”

“No.” Susan shook her head. “It seems more like it’s mental or even emotional. But something seems off.”

It was always difficult to tell for sure with Becky. Their sister was born with a developmental disability. In those days it was often impossible to say with any certainty what caused the condition, and that was true in Becky’s case. Because she had always been nonverbal, communication was challenging. She understood language, but she did not use it to express herself. At one point in her life she had learned a small amount of sign language, but she didn’t keep up with it. She had always been reluctant to interact with the outside world, preferring to limit her contact with others. She had been content to stay with their parents until they died and then for the last eleven years she had lived with Susan. It was a situation they were both comfortable with. It was because of the lack of conversation between them that Susan didn’t always bother with her hearing aids. Over the years, Jim had marveled at the way they communicated without words. Susan seemed to have a sixth sense when it came to knowing what her sister wanted and needed. Normally they had a very comfortable and relaxed relationship.

Jim, on the other hand, had always been the worrier in the family and as his sisters got older he worried about them constantly. He checked on them frequently, and it seemed like each visit ended with him trying to convince Susan to stop driving. With her vision and hearing issues, he felt like she was taking unnecessary chances. Jim had retired the year before, and he was more than willing to drive them wherever they needed to go, but his sister was adamant about her independence. “I’m only seventy-one! I have friends ten years older than me, and they’re still driving.”

Still he could not help being concerned for both of them. In the back of his mind, Jim thought they would both be better off if he could convince them to move into an assisted living center, but with the luck he was having on the driving issue he knew how that would go over.

Susan broke his train of thought. “Tea sounds good. I think I’ll have a cup. Would you like some?”

“No thanks.” Jim had never understood the appeal of hot tea. “But I will have a cup of coffee.”

Although Becky had always been a sound sleeper, they were careful to be quiet as they walked to the small kitchen. But what they saw when they entered the room shocked them. All four burners on the gas stove were turned on. The flames were leaping about, and just inches away on the counter was a cloth potholder and a towel.

Susan gasped, “Oh my God!”

Jim rushed to the stove and shut off the burners. The two of them stood in disbelief for a few moments as the full weight of what had just happened settled on them. Jim turned to his sister. “We have to take Becky in and get her checked, for her safety and for yours.”

“Yes, okay. Obviously I’ve got to start watching her closer.”

“How long ago was she in here?”

“It’s been about an hour.” Susan shook her head just thinking about what could have happened.

Jim did not want to scare his sister, but he did want to make sure that she understood that this changed everything. “How often does Becky go outside by herself?”

“Well, sometimes in the morning, if the weather is nice, she goes out to the back patio. She likes to sit and crochet before it gets too warm.”

“As far you know, has she ever wandered out of the yard?”

“No, never.”

Jim thought for a moment. “Until we find out what is going on, Becky shouldn’t go out front unless you are with her. There is just too much traffic on this street.”

“Of course. I’ll call tomorrow and make an appointment with her doctor.” Susan hesitated and then said, “You know they always warned us that, because of her condition, Becky might be more susceptible to dementia than others. Do you think this could be the beginning?”

“I just don’t know. But we can’t take any chances. There are too many ways for her to get hurt around the house.” Jim knew that he would need to start coming by more often to check on them.

At that moment he heard a door down the hallway and then Becky’s footsteps as she walked their direction. Jim turned and whispered to Susan, “Don’t say anything about the stove. There’s no sense upsetting her when we don’t know what is going on.” Susan nodded in agreement.

Becky stepped into the kitchen and smiled with surprise when she saw her brother. She held out her arms, her signal for a hug, and Jim embraced her. As they stood there in silence he didn’t want to let go. He was afraid of what the future held for her, and he wanted to protect her and make everything better. Seeing his oldest sister made Jim think about the unfairness of life. Her existence had been an endless stream of challenges, and now she might be facing the biggest test of all. Becky walked over to a chair at the table and sat down. Jim couldn’t help but notice that there was no interaction between his sisters. He made a mental note that perhaps Becky’s personality was subtly changing as well.

The three of them sat in the kitchen for a while. Jim and Susan made small talk while Becky alternated between staring off into space and then suddenly seeming agitated and tense. Jim and Susan exchanged nervous glances and kept talking.

Finally Jim asked Becky if she would show him her latest creation. Becky immediately brightened and headed into the living room to get her crochet kit. After she stepped out, Susan softly said, “I am really getting worried about her.”

“Try and set up that appointment for as soon as possible, so we can get some idea of what’s going on.”

Becky walked back in with her current project. She was crocheting colorful stocking caps for a local homeless shelter. There were many different designs and colors, and Jim marveled at her creativity and skill. Each cap was beautiful and knowing that they would be given to people in need made Becky feel good.

Jim stayed another hour, and after helping with a few household chores, he headed home. 

As he drove, he thought back over the years to everything their family had been through. When Rebecca was nine months old their mother began to worry about her. Her muscle tone was not good, and she wasn’t responsive to the world around her. At twenty-four months the doctors made their cruel diagnosis, telling his mother and father that their daughter was, in the harsh language of the day, “severely disabled” and that she would never be able to function in the real world. They were strongly advised to place her in a state institution where she would be taken care of. They were told that she would be happier with “others of her own kind”, and that it would free them from the burden of caring for her, so they could go on with their lives.

Jim had always been proud of his parents for standing up to the medical profession and refusing to hide his sister away. He could not imagine his family without Becky. But through the years it had not been easy. Out of necessity his mother had home schooled her. The local education system wanted nothing to do with Becky and refused to assist her in any way. His sister could learn if given enough time and not pressured. It just took patience and persistence. She was curious and imaginative and interested in life, but her lack of verbal communication tended to isolate her from others.

Growing up, Rebecca had never been invited to a birthday or slumber party. Her parents invited children over on several special occasions for Becky, but none ever came. At no point in her life did Rebecca ever have what could be called a real friend. There were a few people in the neighborhood and at church who would acknowledge her, but because she did not speak, they mistakenly thought she couldn’t understand what they were saying. For that reason, people rarely made the effort to interact with her.

But their mother and father refused to allow Rebecca to be left out. They included her in every possible way. She was as much a part of the family as anyone else, and she was always made to feel like she belonged. She was their daughter and sister – and they made sure that she knew that she was loved and accepted for who she was.

The very thought that Becky, who had already been through so much, could now be facing the onset of dementia made Jim feel sick. The sadness he felt was coupled with a fear of the unknown. Combined they made him feel powerless against a disease that he knew was relentless. As he neared his home, he was more convinced than ever that it would be best for his sisters if they moved into a facility where they would be safe. He just needed to find the right moment to bring up the subject with Susan.

******************************

Over the next few weeks, Jim increased his visits to his sisters. Each time he saw Becky she seemed more anxious and out of sorts. Susan had taken her to their family doctor, and he had referred them to a specialist, but that appointment was two months away.

But just as Jim was increasing his visits to his sisters, he came down with a serious case of the flu. He spent several days flat on his back in bed, and because he didn’t want to risk giving it to Becky and Susan, he followed his doctor’s advice and didn’t see them for an additional ten days. Finally he began to feel better and on a sunny Saturday afternoon he decided it was safe to drive over to their house.

Twenty minutes later he knocked on their front door, and to his surprise, Susan answered immediately. As they went inside she told him she had started wearing her hearing aids so that she could keep better track of where Becky was and what she was doing.

As he looked around the living room she answered the question she knew he was about to ask. “Rebecca is in her room. She stays in there a lot now.”

Hoping against hope, Jim said, “Well, she has always preferred to keep to herself, and when she is feeling stressed she goes through periods where she withdraws even more.”

“Yes, I know – but this is different. She is not eating the way she should, and she’s not sleeping. She is so tired that she gets upset easily. This morning we couldn’t find her crochet kit, and she became distraught. She’s been in her room for a couple of hours. I don’t know how quickly this condition progresses, but she seems to have really gone downhill over the last few weeks.” Susan seemed lost for ideas. “Maybe if you talked to her, you could convince her to at least eat something.”

Jim sighed deeply. “Okay. I’ll do my best.”

It took ten long minutes for him to convince Becky to come out of room. When she finally opened the door, he was shocked by her appearance. His heart sank as he looked at how pale she was. Her hair was dirty and stringy, and there were dark circles under her eyes. She looked exhausted. She stared at the floor and avoided eye contact, and when he held out his arms for his hug, she brushed by him and walked to the kitchen and sat down.

Jim followed and sat across the table from her. In a gentle tone he said to Becky, “Susan tells me you haven’t been eating very much.” Becky turned and shot a dirty look at Susan.

Jim said, “She is just concerned about you – and so am I.” Becky closed her eyes and put her head down. It was her way of shutting down when she felt uncomfortable.

Jim continued, “I know you haven’t been feeling well lately, and there are things going on that are difficult for you to understand.” Slowly Becky lifted her head and looked at him. Jim carefully weighed his words. “Whatever is wrong, we will all deal with it together.” Becky’s face took on a look of relief. At that moment Jim realized that she found it comforting to think that someone else understood that she was struggling. He reached over and patted her hand. “We are a family, and we love each other and take care of each other – no matter what.” Becky’s eyes were wide as she listened.

“I know your crochet kit is missing, and that is upsetting you. But I promise that if we can’t find it, we will get another one tomorrow. Does that sound good?”

Becky smiled. As Susan watched her sister express even a small amount of happiness it made her heart soar. The atmosphere had been intense around their home the last few weeks, and it was nice to have a moment of normalcy again.

Jim felt the same joy, so he decided to press his luck and see if he could get her to eat. “You know what, I missed lunch and I’m starving. Becky, let’s have some tomato soup. You and I both love that stuff.”

Becky hesitated for a few moments and then nodded in agreement.

Susan was thrilled. “All right, tomato soup coming up.” Becky preferred a particular brand from the store that just needed to be heated up, so Susan always kept a supply of them on hand. She went to the pantry and pulled out two cans. Becky motioned to her sister to bring them to her. Susan laughed. For some reason, part of the enjoyment for her sister of eating her favorite soup was getting to peel off the covering and then replace the lid. Once both cans were ready, Susan took them to the microwave oven and opened the door. But it was at that moment she saw something that broke her heart. Jim watched in confusion as she flinched and then stood with her head down. The containers began to shake in her hands spilling soup on the floor.

“What’s wrong?” Jim said as he jumped up. He looked in the microwave, and it took only a moment for a feeling of despair to sweep over him. Tears began to roll down Susan’s cheeks, as Jim put his arm around her shoulder. Becky calmly stood up, walked over and pulled her crochet kit out of the microwave. She turned and glared at her brother and sister for several seconds and then she went to her room and closed the door. 

******************************

One month later, Jim arrived at his sisters’ house, afraid of what he would find. During the intervening weeks, Becky had seemed to slip away. Each time he visited, she essentially ignored him. She was obviously depressed, and she refused to communicate with him about how she was feeling. He tried different approaches in an attempt to understand what she was going through, but she always shut down. Thankfully, her appointment with the neurologist was only ten days away. He hoped they would get some kind of definitive diagnosis.

Susan let him in, and as they were discussing the latest issues involving their sister, Becky walked into the front room. As usual her appearance was a mess, but this time instead of avoiding eye contact she looked directly at Jim. He was startled by the expression on her face. There was a focus and determination that he had not seen in a long time. It was as if she had finally resolved or accepted something – but just what, was not clear. Susan stepped between Jim and Becky.

“Would you like your usual cup of coffee?”

“That would be great.”

Susan turned and walked away. Becky quickly waved at Jim to get his attention. He looked at her, and she pointed down to her sister’s house shoes. He glanced at them and was surprised to see that they were on the wrong feet. Although unusual, it did not seem particularly alarming to him. He just thought she’d gotten dressed in the dark or was in a hurry and hadn’t noticed. He looked at Becky and shrugged. He could tell his response irritated her. She stared at him for a moment and then made a beckoning gesture with her hand for him to follow her. He was confused, but the fact she was willing to communicate with him was at least encouraging.

Jim followed Becky through the kitchen past Susan who was making the coffee. As they approached the back door, he could hear a steady muffled noise, but he wasn’t sure what it was. Becky opened the door, and they stepped out on the porch. The sound was now recognizable, but Jim did not want to believe it. He hesitated and then looked at the garage behind the house. The door was up, and he could clearly see the smoke coming out of the exhaust pipe of Susan’s car as the engine idled. Jim could feel tears filling his eyes as Becky put her hand on his shoulder and turned him towards her. She pointed at herself and shook her head no. Then she pointed at Susan through the door and nodded her head yes.

Everything was suddenly clear. Jim was completely overwhelmed by the realization that it was Susan - not Becky - whose mental capacity was being compromised. She had known all along, but for some reason she had waited until now to disclose the truth. Becky’s physical decline had been the result of the stress and anxiety she experienced as she watched her sister get sicker and sicker. Jim could not imagine what it had been like for her to have him thinking that she was the one who was struggling. She must have been scared and confused by Susan’s actions, and she must have felt anger and resentment towards him when he automatically assumed that she was the one who was being forgetful and making mistakes. With tears streaming down his cheeks, he turned to Becky. She too had tears in her eyes, but there was no trace of anger in her face.

Jim looked at her and softly said, “I am so sorry.” Becky studied him intently and then swung around and watched Susan puttering in the kitchen. After a few moments she turned back to Jim. She began to smile as she held out her arms for a hug.

******************************

Six months later, Jim went to visit his sisters. This time he entered through a set of sliding security doors that led into the assisted living center that was now their home. The decision to move his sisters here had been difficult, but it quickly became obvious that it was necessary. Susan, of course, wanted to remain in her home, and Becky wanted to be wherever her sister was – however, this facility offered the care and attention they both required. Once Becky was feeling better, she had written out answers to questions that Jim had. She explained that the reason she kept Susan’s health issue a secret was because she was afraid her sister would be taken away, and they would no longer be together. It was a tremendous relief for her when she realized they could both move into this place.

Jim visited them several times a week and he was now a familiar fixture at the center. Many of the residents and staff spoke to him as he made his way to the large central living area. As he suspected, both of his sisters were in there.

Becky sat in a large stuffed chair that looked like it could swallow her. As always, she was happily crocheting and seemed content. Her appearance had dramatically improved as well as her appetite and ability to sleep. She once again seemed like the sister that Jim had loved for more than sixty years. Sitting beside her was a woman named Ingrid. She also loved to crochet, and it was this shared interest that had created a bond between the two of them. For the first time in her life, Becky had a real friend.

Susan was standing across the room, involved in a conversation with three other ladies. She was talking and laughing and was completely engaged with them. Jim was pleased to see that she also seemed at peace. Although she occasionally had bad days, there were still many good days that she was able to enjoy. No longer being responsible for Becky’s well-being had removed a great deal of stress and allowed her to relax and to live in the moment.

As Jim watched Susan, he worried about how swiftly the disease would progress. He certainly hoped for the best, but he was realistic. He knew that her decline was inevitable and that it would be painful to witness. Most of all, he was concerned about how Becky would respond. How would she react when Susan no longer recognized her? Because they had been so close for so many years, he knew it would break Becky’s heart when she realized that the person who had showered her with unconditional love no longer remembered they were sisters.

He slowly looked around the large room, aware that every resident who lived here had a similar story. All of their families had faced the same anguish as they tried to make the right decision for their loved one. Every person in this room was a mother, father, grandparent, son, daughter or sibling. Each one of them had lived lives of purpose and importance, and each one was loved by relatives and friends. Jim knew that what had happened to his sister could happen to anyone.

As he watched the gentle activity in the room, he couldn’t help but wonder how much longer it would be before there was a cure that could spare so many from so much sorrow.



 

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