Posted by: paulbassler | January 18, 2013

Living With Disability – Transitioning to a New Life

In the story, Surviving a Burst Brain Aneurysm, I shared my experience when my lovely wife suffered a burst brain aneurysm in 2008. It’s actually a brief look at a long, painful, fearful, second-by-second, minute-by-minute life experience that stands as the most traumatic period of my life. In sharing my story it is my hope to try and help those who may be experiencing similar events. I know when these unexpected events are happening, it is difficult to think straight, make good decisions and try to envision a future given the radical change in your world. I am hoping by sharing my experience, it will help those experiencing a similar event and give them some idea of what the future might look like. Hopefully my journey will help others be better prepared for caring for someone with severe disability.

When my wife and I returned home from the Philippines, after her surgery, three months in the hospital  and four months of physical therapy, I was extremely apprehensive about caring for her on my own in the months and years ahead. The months we spent in the Philippines with a live-in nurse and daily visits from a professional physical therapist taught me a great deal. I learned how to move her from her bed to a wheelchair, and from the chair to a couch. I learned how to change her diapers and protect her from bed sores, rashes and infections. I learned how to shower her in a wheelchair, brush her hair, cook our meals, and navigate her on a wheelchair. Perhaps the most important lesson I began to learn was how to understand my wife as she struggled to communicate.

What I have been most grateful for is my wife’s disposition. My wife, her name is Dorothy, lives in the moment and enjoys a childlike innocence that manifests a tremendous gratitude and love for every minute of her life. With her difficulty in recalling the past and no desire to look into the future, her only reality is here and now and that is not only wonderful for her but for me as well. Life only exists in the moment and the longer we hang out there the better we are able to stave off the fear associated with an unknown future.

In the beginning I was unaware of this. When she left the hospital she couldn’t tell me anything about herself, including what she felt, what she was thinking, what she liked or disliked…anything. That made caring for her an extreme challenge. I had to learn to be more observant. I had to learn how her gestures communicated more of what she needed than her speech. In the first week after leaving the hospital, my wife cried a lot for what seemed to be no reason. Her doctors gave her sedative medication, but that didn’t work. After a while, I learned that her crying was a way of communicating something to me. It could be something simple like turning the channel on the TV or turning off the air conditioner. Her tears reflected her frustration at not being able to communicate what she wanted. Once I discovered this I began to be able address her problems and help her be more comfortable. As her speech improved, she would say, “my leg itches,” and I would dive down and start scratching every part of her legs. I didn’t know where on the leg she itched or even which leg. As it turned out, what she really wanted was to change the television channel. The only way I was able to learn that was by observing her gestures. She’d be asking me to scratch her legs but looking at the TV. Once I learned to pay attention to her gestures I became a better caregiver.

After we arrived home, there was much to do. Dorothy and I lived on the second floor of a two-story home. The staircase was highly prohibitive, but I wanted to return her to her normal home environment. It took four men to carry her upstairs, where we had a kitchen, bathroom, master bedroom and a giant terrace, allowing me to take her outdoors every day. For a time we tried to make this work, but it was nearly impossible to get her downstairs when we needed to go anywhere, making it clear we needed to move downstairs. After moving downstairs, we found we had too many pieces of furniture and much of it had to go. As in the Philippines, all we needed was a fold-down couch so she could have a place to stay and watch TV. Each day I would put her on the couch so I could lower the back and change her diapers ever couple two three hours. She would spend her day watching television, and eventually, playing games on her lap top. We developed a routine. Though it was not much of a life it was life, and we had successfully transitioned from 24-hour a day nursing care to home on our own. That, however, was only the beginning.

For tips on government assistance for the disabled, needed medical supplies and equipment and more, please read Living With Disability –  Finding Help.

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Responses

  1. What a challenging path you have had. I wish you all the best!


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