Let’s face it. Today most of the world is obsessed with ownership. We love to discuss our lives, our cars, our homes, our children, our jobs, our electronics and numerous other belongings. In most cases, we lovingly refer to all of these things as ours, throwing up the word “my” in some instances.
If you listen closely enough, you will hear the word “my” used very often in the long term care world. If you hang around a skilled nursing facility any length of time, you will hear the term “my resident” used. Sometimes you may even hear it taken a step further to incorporate the word “little” so it now becomes “my little resident”.
My. The word “my” suggests ownership. In the above example it suggests ownership over other living beings. I guess we use it most often with our children. Of course, we have cause to argue the term in that sense because we actually give birth to our children. They truly are part of us, we clothe them, we feed them, and we naturally feel we have ownership in their lives. So the question we should ask is why do we use the term so frequently when discussing Elders living in skilled nursing facilities? Is it because we have become so task-oriented as a society that we only see the tasks that must be done?
I think the worst part of it all to me is I used to do it too. I can remember using terms like “my,” “still,” and perhaps the worst one of all “aww” when referring to Elders living in some of our homes. As I have grown and evolved in the person-directed-care movement, I have realized more than ever the impact of the words I use and how they leave a footprint on those around me.
We are trained to see the tasks that are before us. When I started working in long term care as a nursing assistant several years ago, I was taught to look at all the tasks that needed to be accomplished. I was given “ownership” over individuals and I planned their day. At that time, healthcare for me was as ritualistic as owning a dog. Feed them, bathe them, clothe them, walk them, toilet them, and because they were “mine”, I could control all of those routines as I wanted.
It was only when I began to step away from those tasks and routines that I could see more clearly. I
can remember sitting in Savannah, Georgia with a WW2 hero from the skilled nursing facility I worked at during the time and realizing this person was so much more than the tasks we associated him with. I remember the day he approached me about the trip and how important it would be for him to take
it. Several months later, I had learned more from my relationship with him than most people could have taught me in years. I learned that sometimes it is easy to put our expectations on others and force limitations on them that aren’t really theirs. As Murray and I made our way through the museum that afternoon, I learned the power of person directed care in its truest form. Murray, having actually survived 29 missions during WW2 into enemy territory while battling German fighter planes, was given the opportunity to lead the tour by the formal guide. He spent the afternoon telling everyone in the museum about his experiences being part of the “Bloody 100th Bomb Squad”. In one afternoon he went
from merely being a “patient” in a long term care facility to a “teacher” with more experience and wisdom than any professor I had ever met.
Words have vast power. They can cause us to dream of faraway places, remember passages of time that are no longer, and give us strength to face tomorrow. Knowing this, if we are to truly change the culture facing aging, we should give precedent to changing our vocabulary. So many times we seek to change physical environments and structures but give little thought to the things that we let slip out of our mouth from day to day. True change brings a true shift in the way we see things. When we view things differently, then we say things differently. When our language begins to change, then we cause others around us to have a paradigm shift as well. I think Emily Dickinson said it best when she said, “I know nothing in the world that has as much power as a word. Sometimes I write one, and I look at it until it begins to shine.”
Woodrow epitomized many of the men of his generation. He grew up poor and worked his way through college, earning a bachelor’s degree in civil engineering, served in World War II, and worked for the energy company for some 44 years. He remained married to the same woman for 71 years, was a father to four, a grandfather to six and great-grandfather to six. He died at the ripe old age of 93.
Woodrow’s parents both emigrated from Sweden. His father left the family, so Woodrow, as the oldest son, went to work sweeping floors at the local power plant at 14. He knew from this experience he needed an education, and so went to engineering school to become a civil engineer. After completing college he joined the navy, like so many other young men at the time. Years later, when his grandson was leaving for an assignment in the Coast Guard, he shared some stories of his time in the navy. His grandson and his entire family was shocked to learn that Woodrow—a humble, reserved man—was one of the very first navy seals, an underwater demolition expert.
Growing up, Woodrow would accompany his father to dynamite rocks for highway construction in the Rocky Mountains of Colorado. He was comfortable using explosives to blow up just about anything. Toward the end of WWII, he was on his way to the harbors of Japan to set off dynamite underwater, destroying the Japanese vessels sitting in the water, when the bomb was dropped and the war ended. His grandson, having been exposed to some naval history through his training in the coast guard, was honored to learn his grandfather had been part of such an elite group, even though the mission was never completed. This was the last time the two would speak. Woodrow died before his grandson returned. The entire family was thankful Woodrow had shared this piece of his history with his grandson prior to his passing.
Woodrow practiced meticulous, healthy habits all his life. He followed a strict diet, exercised in his basement each night after work (this was during the 60s and 70’s—before exercise became a fad). After retiring he took a lengthy bicycle ride each day, until he started to have problems with shortness of breath and occasional heart palpitations. So, at the age of 83 he began to see a doctor regularly. He was diagnosed as having asthma and some congestive heart failure. This was the beginning of his long-term care journey, and although his medical condition became much worst over the next ten years, he was able to stay in his own home and declined well—that is, he moved towards the end of life in peace and comforted. He believed the heart and lung problems were the result of frequent exposure to asbestos he encountered during his working years. He took an inhaler and medication for his medical conditions. One morning, when he was 84, Woodrow passed out. He was taken to the hospital where it was determined the congestive heart failure had advanced, causing him to pass out. During this stay, he also developed difficulty swallowing and ended up with aspiration pneumonia. Some food went down the wrong pipe and into the lungs instead of the stomach.
The aspiration happened on the same day he was to be discharged from the hospital. As his son and wife were helping him into the car to go home he started to turn blue, was coughing and complained of not being able to catch his breath. They quickly put him in a wheelchair and whisked him back into the hospital, requesting he be readmitted. They were met with a great deal of resistance. The nursing staff said they could not readmit him because he had already been discharged, and that he would have to be readmitted through the emergency room. So his son and elderly wife took this frail, sick man, gasping for breath, back to the emergency room to be reevaluated. An X-ray confirmed that much of his breakfast ended up in his lungs.
He was hospitalized for two weeks, until his lungs had completely cleared. He also received speech therapy to strengthen his ability to move food from the front of his mouth to the back and swallow, so that food would go down the esophagus and not the trachea. Following this hospital episode, Woodrow was noticeably weaker, and over the next ten years continued to decline and become frailer. Had he not had the family support to help him stay in his home, he would have likely needed to move to assisted living or a care setting where he could get help.
At this point, Woodrow could no longer ride his bike, so he exercised each day with light weights and a stretch band to maintain strength. His home had a basement and he walked up and down the stairs each day for endurance. He required a standby assist for safety when bathing, but could still dress, feed, transfer and was continent. He did begin to spend more time in the bathroom, fearing he would have an “accident.” He could not perform housework or yard work, he couldn’t cook or shop. He still paid his bills and managed his money, and was able to understand the purpose and take as directed the many new medications he now needed to support his heart and lung functions.
A speech therapist visited several times to assure his swallowing was adequate to prevent further aspiration. Woodrow’s condition stabilized over the next several years, with him taking meticulous care of himself, paying regular visits to his doctors, and a supportive family helping him remain in the home he loved. After retiring he had developed a passion for restoring older car engines, and since he could no longer stand for any extended time, his son fixed a special chair so he could sit and work on the car. Woodrow did well until his late eighties, when more medical problems arose. He developed peripheral vascular disease due to the decreasing function of his heart, and his spine began to collapse due to degenerative bone disease. The peripheral vascular disease caused his lower extremities to swell, become purple, have occasional skin ulceration and cause increased pain. The spinal collapse made his walking much more difficult, so he began using a walker for balance. He had some abdominal discomfort because of his back being bent.
Over the next several years these conditions continued to progress, until in his last few years of life his lower back was doubled over at almost a 90 degree angle, his lower legs were blue and three times their normal size, with the development of occasional skin ulcerations. This particular problem required daily visits from a visiting nurse to apply special medicine and wrap his legs to prevent further skin breakdown and promote whatever healing his failing body could muster. He tired easily and took a nap each day. Yet, in spite of these progressive medical problems, paid special attention to eating soft healthy foods and drinking supplements for extra nutrition, and sat in the garage when he could to work on a car. He gave up showering, saying he couldn’t stand water hitting his face but did take a sponge bath each day. In fact, he insisted on continuing to do as much for himself as long as he could, which primarily included dressing himself, getting around the house with the help of a walker, getting to the toilet when he needed to and feeding himself. Woodrow was like so many frail elders in the final few years of life. Though they grow weak and tired, at they want to be as autonomous as possible. This was especially true in Woodrow’s case. He was a self-made man; had worked very hard his whole life and took pride in his independence.
Each morning he would rise at about seven in the morning for the hike to the restroom, where he would carry out his daily ritual of self-care. Most notable was that he entered the bathroom in his pajamas, and emerged some three or even four hours later, fully dressed and ready for the day. Each day he gave himself a sponge bath, washed and rubbed lotion on his arms and legs, brushed his teeth, rubbed Vaseline on his purple swollen feet to prevent further breakdown and help them “feel better,” as he would say, spent time on the toilet “hoping to have a BM and get that burden out of the way” for the day, and finally put on his shirt and pull on his pants. It was quite an accomplishment for someone with his limited abilities. Once he was dressed and ready for the day he would eat breakfast (by then it would almost be 11 am), then do his exercises. In the afternoon, he would read, have lunch, take a nap, watch TV or take a trip to the garage to work on cars, have a dinner of soft food and a supplement, a little more TV, then off to the bathroom to prepare himself for bed. He would enter fully dressed and emerge two or three hours later in his pajamas and ready for bed. He slept well each night. This became a typical day for Woodrow in his final few years.
But Woodrow continued to decline: He became more weak, ate less and less and complained about food not tasting right, stopped going to the garage, slept more and more, and complained about the pain in his back and legs (yet he did not want to take pain medicine because it made him lightheaded). Eventually he became so weak he could not even stand. Woodrow believed he would get better someday—that if he exercised more or ate healthier food he would get his strength back. He feared admitting he was dying meant he had failed. He agreed to go to the hospital to have his legs checked, but vowed he would return home. He never did.
Over the next six weeks, Woodrow was in the hospital three times. His list of problems was lengthy: Congestive heart failure, pneumonia, osteoporosis, spinal collapse, dysphagia, hypertension, vitamin D deficiency, peripheral vascular disease, leg ulceration, edema, and the list went on and on. After each admission he was moved to a nursing home for rehab. While at each nursing home Woodrow became dehydrated, his dysphagia became much worse, to the point where he would cough, gag and sputter after swallowing liquids. Woodrow did not believe he was going to die, so he and his family requested he be transferred back to the hospital for treatment each time his condition worsened. Six weeks after his initial admission, Woodrow was in a much weaker state, and the doctor told his family he would not improve and was a candidate for palliative care. It was recommended he be transferred to an inpatient hospice for this care.
Woodrow went into hospice care, and died within seventy hours. The only time he smiled during the six-week period was hearing a story about his grandson, Justin—a young man who had worn T-shirts and blue jeans his whole life. Justin was working as an intern for a recording company in Los Angeles, and was invited to help work at a musical awards program, a very formal event. He was required to wear a tuxedo. When this story and the attire Justin was to wear was relayed to Woodrow, a huge grin emerged on his sunken face. As he was grinning, he shook his head from side to side and repeated, “Justin dressed up in a tuxedo, I can’t imagine him so dressed up. What a sight that would be to see.”
Woodrow was stubborn in the sense he was self-reliant and wanted help from no one. In the end, he was thankful he could care for himself, preserving his pride and dignity and being able to stay in his own home with the oversight of family. Being able to dress and do his own care allowed him to retain a sense of control over himself, to continue to function at his most optimal level, to be comfortable and, for the final years of his life, to give himself palliative care. He could care for himself in a way that was as pain free as possible, be involved in and make decisions about his own care, and know he was loved and cared about.
Woodrow was my father. I was grateful my son and all of our family found out about his past as one of the first navy seals, something none of us ever even suspected, and that Woodrow was able to end his life with grace and dignity, caring for himself as much as he could.
Hi Angie and Dr. Thomas
I know this post is lengthy, however I hope it communicates one unspoken aspect of aging. The slow insidious decline that happens as we approach our final days. As a nurse with many years of long term care in home health, hospice, assisted living and nursing home, I was so thankful I understood and could support a peaceful and comforting decline with my father. I hope his story can be a beginning of a conversation “declining well”. In his final years he took four to five hours every morning to dress himself. would this be allowed in a facility? We still have a long way to go. Thank you for Eden Care,Changing Aging and the Green house project!
And yet:
“…I had learned more from my relationship with him than most people could have taught me in years.”
As a mother, I refer to my children; as a grandmother, to my grandchildren; as a teacher, to my students; as a wife, to my husband. I never once thought of any of these people as someone I owned, a possession. I use the word “my” to indicate the fact that I have a relationship.
Relationships are precious and I will continue to own up to mine.
So no, i don’t think this post is changing aging very much. Change and dogma do not go together that well in my opinion.
Angie –
I love this blog. Spot on!
Thank you Cathy! We love the Learning Collaborative and appreciate the opportunity to be involved. Thanks for the kind words!
Angie’s article demonstrates the ability of insight that we should search for in our lives to assist others to assert their independence in a caring setting. Often the individuals strength is sublimated for the convenience of the care facility and their caregivers.
I would love to know that I could sleep in, eat my breakfast and have my morning coffee while I watch the morning show on TV sitting in my easy chair before getting dressed if I needed to move to a 24hour care facility.
A wonderful post, Angie! It is a pleasure to be working with you on the Pioneer Network’s National Learning Collaborative project!
Great example of how stepping away can always bring things into focus and give us all a new perspective. Great article Angie!
We are so excited about real culture change as a partner with Angie at the Signature Revolution! I see a new day for all of LTC!
Excellent and well stated. There are no words that can be considered insignificant. We are given this great opportunity to listen, learn and share in their life stories.