In her sixties and by then fully clutched by dementia, my sister Carole had to face several operations. No longer the caregiver of daughter and spouse, she became the one to be cared for. The first was an operation for bunions on her feet that appeared to be extremely painful because of their bulging size. However, she bore pain under the double guise of Alzheimer's disease and quiet acceptance and so how much she hurt remains a mystery.
Carole headed off to the hospital for her surgery fairly unaware of where she was going or why. Undressing her for surgery was a tussle as she fought people who were forcing her out of her clothes and into a ridiculous gown full of saggy, baggy openings and bothersome ties. Nurses and doctors are trained to take care of their patients, but often they do not understand that working with a person with Alzheimer's requires a different set of rules. Forcing Carole's clothes off and then forcing odd clothes on only resulted in increased fright and anger. While we tried helplessly to intervene, "medical professionals" ignored us as uninformed, untrained, incapable outsiders. Simply saying, "Do you want to remove your shirt or your pants first?" or "Do you want this gown or that one?" would have eased the resentment and restored some dignity to Carole as she experienced a sense of control over the situation. Granted we had implemented this overbearing behavior in the past, forcing her into cars, into chairs, into showers, or into clothing but a step back and an offer of choice most often dissolved confrontation.
Post-surgery sedation and family patience allowed for ease of redressing and helping her climb into the wheelchair for the trip to the awaiting car and her return home. We had been warned to set up a bed for her in the living room and to purchase crutches for hobbling around the house as the doctor explained that she would be unable to walk without excruciating pain for days and maybe even weeks or months and that stairs would be a total impossibility for quite some time.
All of the best intentions of nurses, doctors, and other medical staff fell on deaf ears with Carole when we handed her the new pair of crutches. Unable to figure out how or why she should use them, she let them tumble to the ground as she wandered toward the front steps of the house and then ascended them effortlessly. Once inside we guided her to her new bed placed center-stage in the large parlor. With one disgusted glance at the "junk" in her living room, Carole resumed her wandering search of her home: up the stairs, down the stairs, out to the garden and back. Pain did not exist for Carole even long after the painkiller effectiveness had vanished. Prowling was her lifestyle so she continued her rambling vigil.
Carole had two more surgeries during the final years of her life. The first was for a hysterectomy. While I do not think she really felt the pain from her condition and the surgery would not restore a fruitful life, doctors advised the procedure in case there was cancer developing. And so Rich followed doctor's orders and set her up for an operation. Decisions such as these are faced by many families: Is surgery and prolonged life the best choice for a loved one in the throes of Alzheimer's disease, a disease with no cure and no effective medication.
Alzheimer's patients react differently to sedation: some go out like a light while others cannot reach adequate sedation. There is also debate about the pain tolerance of victims. Many do not seem to sense pain even when it would appear to be excruciating like a burn from a hot stove or a broken bone from a fall. How Carole felt we do not know because she could not begin to tell us. She just rolled off to surgery and later returned with never a grimace or a complaint.
The real trauma from her second surgery began with the attending nurse after Carole was wheeled into her room and transferred to her bed. Although we had carefully requested that admissions write on her chart "Alzheimer's" and "Lactose intolerant" neither of these appeared to be noteworthy to the attendants in charge. Shortly after Carole settled into her bed, the nurse began her regular post-operation questions to check on her patient's mental state: "What year is this?" Silence. "Who is the president?" Silence. "What month is this?" Continuing silence.
The "What's your name?" silence broke the nurse. She huffed, rechecked the chart, scribbled scrawling notes, and mumbled something to us about, "We can't have this. She MUST respond." We offered a feeble explanation for Carole's confused silence but the nurse just muttered on about regulations as she stomped from the room with a hissed, "What are we to do?" Carole had no inkling of who the president was. She did not even know her own name. Why did these silly questions even matter when an astute observer could recognize the veil of Alzheimer's that enveloped her? These routine and in Carole's case insensitive questions baffled her as they drove nails of despair through us.
Later the same nurse returned to find that Carole had soiled the sheets. She reiterated, "We can't have this!" She then added, "If you pee the bed again I will put you in diapers!" With that thoughtless comment and conduct she exited. We approached the bed and patted Carole's hand, reassuring her that everything would be all right. Carole stared blankly at us as one giant tear gathered at the corner of her eye and then slid down her cheek and tumbled onto the pillow. Grief gripped us as we gazed helplessly at her. Soon it was shift change and the inconsiderate nurse left us but not without resounding side effects.
Carole did not urinate again during her stay. Even though the staff plied her with milk (remember the lactose intolerance?) and other beverages, she refused to drink. I believe she was too scared and the nursing staff was so short handed that they did not have time or take time to worry or care. They just wanted her to patch up quickly and go home, freeing the bed for someone else.
The final shock to the heart arrived when hospital officials handed Carole the release papers (which she ignored) and they wondered aloud why she refused to sign her name. If she didn't even know her name, how could she sign it? Why would she even try? Neither my sister Jackie nor I had the authority to sign her release form either, so we awaited her husband's arrival from work to get her discharged so we could take her home from this nightmare hospital episode.
Needless to say when Carole was sent home, hospital staff recommended bed rest with "no stairs or exertion".
Deaf ears ignored our suggestion that she would not, could not obey the command so we also ignored the recommendations and let her do as she wished. You cannot force someone against her will and you definitely could not force Carole when she set her mind to something else. Bed rest made absolutely no sense to her. Wandering around the house did and so her pacing pattern resumed.
If your loved one with Alzheimer's disease must be hospitalized, learn to raise your voice and demand excellent care. Report rudeness, request a conference to explain about this insidious disease. Do not let workers ply your loved one with medications, especially sedatives and painkillers, without a clear explanation as to why these meds are necessary.
Try to reasons with physicians about the absolute necessity of treatment and have them offer options. Why would your loved one be forced to endure anesthesia and surgery, post-operative recovery, chemotherapy and radiation to extend life when the mental capacity is so expended? Tough choices, tough questions, and an incredibly tough situation. Alzheimer's disease exhibits not a shred of kindness.
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