In a November 2021 publication of Professional Case Management, The HeartBeat of Case Management, the reason for an abrupt personal lifestyle change to care for my husband of 60 years, who suffers from progressive Alzheimer's disease, was described. The success achieved for more than 2 years is due to a great deal of family, medical encouragement, and the support of friends. One very pleasant result of the weight loss was a three-dress size decrease forcing the purchase of new clothes and the donation of numerous outfits that were too big (Coulter, 2021).
Nursing theories never grow old. According to Benner (1984), all individuals seeking to become expert-level nurses pass through each stage. The stages are novice, advanced beginner, competent, proficient, and expert, for anyone who may have forgotten. As the years of experience guide us in whatever specialty we select, in this instance, Case Management, Benner's guidelines have been front and center. Before Benner's stages, the theorist, Dorothea Orem, developed the Self-Care Deficit Nursing System. This model portrays a situation in which the individual is unable "to engage in those self-care actions requiring self-directed and controlled ambulation and manipulative movement, or the medical prescription to refrain from such activity. People with these limitations are socially dependent on others for their continued existence and well-being" (Hartweg, 1991).
According to the definition, our self-care directs us to be able to care for others so that they may perform at the highest functioning level in spite of infirmities. The self-care theory requires that we first take care of ourselves before we can care for others. We must demonstrate optimal health care in our own lives. A great deal of nursing time is consumed with educating a patient or a family on the necessary steps to assist a person in returning to optimal health. As mentioned in the previous article, anyone teaching another regarding good health habits must present themselves as a role model if they are to be believed.
Over the last 2 years, as a retired RN case manager, I made a lasting lifestyle change that invigorated me to be in the best possible health as I care for my husband. In addition to Alzheimer's disease, he has glaucoma and was recently diagnosed with Parkinson's disease. These conditions are becoming more challenging.
My primary lifestyle change was losing weight. Sixty pounds less has resolved diabetes (A1C from 7.1 to 5.2), fatty liver (elevated liver enzymes now WNL), shortness of breath, wheezing, and poor endurance. To accomplish that goal, eating habits needed to change drastically. Monitoring carbohydrates and changing to natural sugar substitutes (e.g., monk fruit) solved the sweet issue. Switching to almond milk and flour allowed for easy (and tasty) revisions of my favorite recipes. By substitution, much-loved foods such as crustless pizza (my own creation) and pancakes or French toast taste similar or better! I found low-carbohydrate bread, cereal, croissants, snacks, and desserts. Because a low-carbohydrate diet controls sugar so effectively, other foods such as meat, seafood, eggs, whipping cream, and cheese become the components of delicious meals. Low-carbohydrate frozen dinners are also available. There are several fruit and vegetable selections. Of course, an adequate water intake (preferably with lime) is essential.
Perhaps the most difficult part of maintaining the self-care theory is exercise. Some nurses wear ankle trackers to clock the steps that they walk during a shift. Others make time before or after work to walk or run on a treadmill. Going to a gym for a regular workout is even better. A personal trainer is another option. However, according to Treiger (2013), 60% of nurses do not exercise at all. This is a disappointing statistic. For me, the Cubii machine that I sit and walk on has proven to be the best way to exercise for both my husband, who also walks but for less lengths of time, and myself. I have gone from 500 steps to 6,000 steps 5 days a week.
Audible books became a favorite; I listened to 10 books over the last several months-one being the entire Bible, a previously unkept New Year's resolution for many years. Other walking activities involve listening to music, watching TV, playing solitaire, or talking on the phone. My walk varies from one- and three-quarter hours to 2 hr. It can be done all at once or broken up. The main thing is consistency and keeping at it. On some days, when I feel ambitious, I walk more than 6,000 steps and "bank" time in case I am unable to walk. That takes care of the guilt.
Now, for the reason to get in shape. As you know, when caring for a child, we are constantly teaching skills that will lead the child to independence for life. Caring for adults whose life skills are diminishing is the opposite. More assistance is necessary as autonomy shifts into dependence. My husband, who possesses a PhD and an MD (of which he has no recollection), is requiring a great deal more assistance. He has significant difficulty with speech; however, he understands everything that is said, remains very curious, and asks questions until he gets a satisfactory answer. The expressive aphasia is a serious frustration. I try to think of what he might be attempting to say to relieve the anxiety. He can no longer read, and that was one of his preferred past-times. By far, his favorite is classical music. I find concerts on YouTube where he watches one program after another for as long as 8 hr. He keeps time to the music with his hands and feet-a form of exercise. He remarks how fortunate it is to be in the front row, not having to pay for a ticket, and have no parking worries. Viewing every component of the orchestra, choir, and/or conductor enhances the interest level.
Directions need to be given one step at a time and he requires constant encouragement. Walking any distance is difficult. He does not like to be left alone, so I take him everywhere I go. At the HOA board meetings where I am the secretary, he sits quietly, or naps while the meeting is going on. I take him grocery shopping with me and sit him in the cafe so that he can "people watch." Unfortunately, the acoustics at church do not allow him to hear well, so we watch church on TV. Dressing and bathing require assistance. Thankfully, at this juncture, I am proficient and capable of providing all the help that my husband requires. I do realize at some time in the future, I may need help, despite my being in good shape. I must be receptive to that. The goal is to keep him at home forever.
Harkening back to the skills necessary to care for my husband, there is no doubt that progressing through the Benner and Orem steps has helped me be a better caregiver. Mastering the self-care deficit and keeping my husband engaged, despite his physical decline, give quality to his life. He appreciates everything that is done for him.
Sadly, Alzheimer's disease has robbed my wonderful husband of so many memories like remembering his siblings, except for his twin, his children, what he did for a living, friends, and places that we lived or visited. He knows and loves me; however, he does not remember my name. In the meantime, the nursing skills that I am so grateful for have equipped me for this special purpose in my life.
Activities of daily living necessitate major assistance and reminders-shaving, brushing teeth, deodorant, dressing, putting on shoes, and the bathroom routine all require help. For him to perform a task, the steps must be given one at a time and repeated over and over. He senses impatience immediately, so I must remain calm and recite the request until he understands it. As mentioned previously, my husband was the cook. He continues to ask about helping in the kitchen. This is heartbreaking.
One very interesting fact is that he remembers his own name and the name of his twin sister. He frequently asks what happened to her. I believe that I have repeated that "she had severe arthritis, became bedbound, got numerous urinary tract infections that became resistant to antibiotics, causing her to become septic and she passed away several years ago" at least 300 times over the last several years. I repeat it each time in the same tone of voice as if it were the first time being asked.
In summary, all nurses are called upon to care for others for all manner of maladies; however, we must not forget to care for ourselves. We are so involved in that mission that we may neglect our own essential needs. This adverse behavior may prevent providing the best care for another. Remember, "taking care of yourself doesn't mean me first, it means me too" (Knost, 2020).
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