You first met and spent a day with my 98-year-old father in July 2006 when he was featured in this very same Aging Matters column (Silva, 2006). That article was the result of a 5-day caregiving diary written in 2005. In 2007, I expanded this diary to 100 days to represent each year of his long life. The diary was written late in my 69th year and in the 12th year of family caregiving among my brother, sister, and myself. Before I retired, I cared for my father part time (i.e., during academic breaks and during part of the summers). My sister and brother took care of him at the other times. After I retired, I cared for my father almost full time in his home. He did try 1 day in a nursing home (Silva, 2006), but he hated it. We did not want him to be any place that he hated. My home was in Virginia, but I cared for my father in his home in Ohio. This presented no major problems for me, as I owned a condominium, which my friends looked after in my absence.
I was unable to read the diary for many years; it was too painful. The 100-year-old father who presented himself in my diary was not the father I remembered. My father, well into his 90s, was mentally alert, active, independent, self-contained, patient, understanding, uncomplaining, and without self-pity. By his 100th year, however, my father was frail, dependent, anxious, and, at times, failing mentally. The fact that despite these challenges he could also be pleasant and even joyful was a tribute to his indomitable spirit. All in all, he was exceedingly courageous in his old age; I don’t know how he endured it.
From more than 200 pages of diary notes, I recount only five excerpts (exemplars) here. I chose those exemplars that best typified my caregiving challenges. Some of these were not easy to write about, as they showed my father and me at our worst—when we were anxious, angry, guilt-ridden, sad, or exhausted. Nevertheless, they are real and not sugar coated.
Psychological Challenges: “My Father Is Breaking My Heart.”
Anxiety and Anger Challenges
According to Anderson and Fallin (2012), transitions may cause stress in families. One such transition is generational role adjustments between parent and child. These adjustments may manifest themselves as anxiety, anger, guilt, and/or sadness.
The following exemplar was typical of a challenging day between my father and me and highlights the emotions of anxiety and anger identified above:
It is 7:00 a.m. Dad calls, and I go to his bedroom. He looks like a wild man: His eyes are wide and frantic, his arms are flaying, his face is flushed, and he is shaking. He says, “I had a terrible night! A ter-ri-ble night!!” He begins repeating “Drink, drink, drink, drink, drink.” I give him a drink of water, and his thirst is quenched. Then he says loudly and more urgently, “My stomach! My stomach! My stomach! I got a big sharp pain in my stomach at 1 a.m. It was terrible, terrible; it lasted 5 hours. I was going to call you but thought, “Whatever is going to happen will happen.” (He has long-standing stomach problems). He barely catches his breath when he continues, “I have to have food. I have to have food. I need protein. I need protein now.” I am not quite awake and consequently feel stressed by his requests, although I realize he is right. He is hypoglycemic and needs food. I take him to the kitchen and fix his breakfast; afterward, he begins to relax. I say to him, “You really scared me this morning.” He says, “I scared you? I scared me!”
By noon, when Gia (Dad’s caregiver for 3 to 4 hours on weekdays) arrives, he seems better. I tell him I am going to the bank to cash his checks and to the store for groceries. He becomes upset.
Dad: “I had a bad night. Why are you going to the store?”
Me: “We need food in the house. Gia will be with you if you need anything.”
Dad: “Do what you want! I don’t matter around here!”
Me: (My heart sinks; I feel angry and defensive.) I say to myself, “I can’t be with him every second.”
I tell him I will return home as soon as possible. When I return, we both have lost our anger but I realize I should have been more sensitive to his feelings.
According to Boertje and Ferron (2013), caregivers are afraid they will be viewed as selfish if they set limits on their time and energy. Hrabe (2013) refers to a phenomenon like this as nursing’s “macho culture” (p. 9).
Of all the emotions, guilt is the most painful one for me. It is, of course, the remorse one feels after committing a wrong. Guilt appears to be an inherent part of caregiving (Stevic-Rust, 2013). It may occur when caregivers become too closely involved with their patients’ problems and cannot solve them (Boertje & Ferron, 2013). Such was the situation between my father and me on another challenging day when I could not solve his health care problems. The following exemplar depicts a situation when “I lost it” with my father and experienced guilt that lingers still. If I could take back one day in my father’s care, it would be this one:
I awake tired and my shoulder hurts from pushing my father around in his wheelchair. At around 11 a.m., Dad’s requests begin.
Dad: “My stomach, my stomach, I have to have something for my stomach.”
Me: “Do you want a snack?”
Dad: “No I don’t want a snack. I’m hungry.” I bring him some meatloaf.
Dad: “Is that it? Don’t I get some side dishes? Where is my soup?” I bring him his soup but it isn’t hot enough. I reheat it.
Dad: “Where are my vegetables?”
Me: (tired and getting impatient)“They’re coming!”
Dad: “Well, you don’t have to get mad.”
Me: “Well, I can only do one thing at a time.”(Later that day)
Dad: “Mary! Mary! I itch, itch, itch. It’s driving me crazy! Get a cold washcloth for my arm.” (It is too wet.)
Dad: “Now my neck itches. Bring me another washcloth.” (It’s not cold enough.)
Dad: “My head itches. It needs to be washed. It hasn’t been washed in 3 weeks.” (I wash his head although it was washed the previous day.) Now he is scratching his arms fiercely until they bleed all over his shirtsleeves.
Me: (beginning to lose it) “Dad, stop that!”
Dad: “Nobody does anything for me. Nobody cares.”
Angry, I leave the room and to ensure that he “hears” me, I return with a 3 x 5 index card that says: “We have been taking care of you for 12 years and all you do is complain. You have no gratitude.”
As soon as I saw the hurt in his eyes, I felt ashamed. I had handled the situation poorly and felt intense guilt. I told him I was sorry for getting so angry. He said he was an old man and shouldn’t have said what he said.
This incident was the perfect storm of my fatigue and shoulder pain colliding with my father’s anxiety about and frustration with years of stomach problems and itching that defied any solutions. Why would he think I cared about him if I could not help his stomach or stop his terrible itching? I should have said, “Dad, I do care. It must be awful to itch like that. Let me get you a Benadryl® tablet and your hydrocortisone cream. I’ll rub it into your arms.”
I felt the saddest when my father talked about his suffering and his desire to die:
- “I don’t know why I have to suffer like this.”
- “All day I wished I wasn’t here.”
- “I want to go to bed and not wake up.”
- “I don’t understand why I don’t die.”
When he said these things, I would ask him if he were tired of being so old and sick. He would look so sad and silently shake his head up and down. It was heartrending. Cowan et al. (2010) stressed the obvious: that long-term chronic illnesses can be discouraging and depressing.
Although my father wanted to die, he didn’t; instead, he suffered for many more years. This intense suffering was most apparent in quiet moments as depicted in the following exemplar:
Dad is sitting in his chair all bundled up. His eyes are closed and he looks so small. The corners of his mouth are turned down. When he awakens, he says in a tiny childlike voice, “I’m sooo sick.” I tell him I am sorry he feels so sick, and I ask him where. He says, “All over.” He asks to be taken to bed. He looks lost in the middle of the bed. He is lying on his back ramrod straight. The covers are pulled tight to his neck and all you see is a little face and a bald head. He looks so alone, so vulnerable, like a solitary figure in an Edward Hopper painting. I sigh, leave the room, retreat to the basement so that I am not heard, put my head in my hands, and cry. My father is breaking my heart.
Newcott (2012) calls moments like these “the silent cry of the caregiver” (p. 80). Carpenter (2013) simply says “caring hurts” (p. 54).
Physiological Challenges: “Why Are My Hands Jerking?”
Townsend and Anderson (2013), in discussing the health challenges of 12-hour shifts for nurses, note fatigue, medical and judgment errors, musculoskeletal injuries, decreased stamina, and burnout. Yet, unlike nurse caregivers, family caregivers may work 24-hour shifts for months and years while enduring physiological assaults to their bodies.
Because of the length of my caregiving experience, the greatest challenge I faced was fatigue, which I noted many times in my diary. I have never had high stamina, perhaps due to my petite size (5’2” tall and 105 pounds). Consequently, I experienced an extension of fatigue that I called “depletion of reserve syndrome.” Such depletion of physiological reserve in older adults has been noted by Cowan et al. (2010).
The following exemplar highlights the depletion of physiological reserve that I experienced during the ninth year of caring for my father:
I can barely speak above a whisper. When people ask me to speak louder, I can’t. My voice seems to be disappearing and at times makes strange thick sounds. In addition, my hands begin to jerk involuntarily. When I try to write, my fingers lose control and my writing becomes a scribble. It is scary. In addition, I am experiencing tendonitis in my right elbow and can’t lift objects without them falling from my hand. I am concerned that I will not be able to continue caregiving.
I sought out medical help for my symptoms but extensive vocal and neurological tests were negative. I believe my symptoms were simply the result of my body giving out. It was about this time that Gia was hired to help my Dad and me. My symptoms gradually improved.
Repetitive and Unrelenting Caregiving Challenges: “I’m Run Ragged.”
Green (2013) noted that, as a geriatrician, she often sees caregivers and patients struggle with the patient’s multiple medications, laboratory tests, doctors, and chronic illnesses. In my father’s last few years, he endured the following: major surgery, mini-strokes, congestive heart failure, shortness of breath, dysphagia, stomach upsets, diverticulosis, hypoglycemia, urinary tract infections, unrelieved itching, insomnia, dizziness, incontinence, frailness, severe visual and hearing problems, cognitive and emotional decline, and anxiety and depression. No wonder he felt overwhelmed by his body’s multiple failures, and no wonder his caregivers also at times felt overwhelmed by the demands these failures caused.
The following exemplar depicts the interplay between my father’s multiple chronic conditions and the often unrelenting and repetitive demands placed on caregivers:
I awake at 7 a.m. and hear nerve-wracking sounds from my father’s bedroom (“Uh, uh, uh, uh, uh, uh, uh”). They are the sounds of dysphagia. “I can’t breathe! I can’t breathe!” he says. We go to the kitchen and begin his dysphagia routine: I heat rotating pots of water until they boil, give them to him, and he breathes the steam. Each steam routine takes about an hour. Now he is feeling better and requests a cup of juice. I hand it to him but he misses it and the orange juice splatters all over him and the kitchen floor. I clean both him and the floor and, while he eats breakfast, I wash a load of clothes. When I return he has to go to the bathroom. This is a slow and time-consuming routine. After he returns from the bathroom, he starts to itch. I then go through his itch routine: washing and drying body parts, applying lotions, and giving him Benadryl. At 11 a.m., Gia arrives to give him his bath. She then continues the steam and itch routines as needed. He requests a hot water bottle for his stomach; she refills it every hour. She then helps with household chores. In the 4 hours she is there, I scurry to take care of banking, shopping, and library business. When I return, I prepare his snack and dinner. Then I repeat his steam, itch, and hot water bottle routines. After dinner, he asks to watch television. While he is watching TV, I pay the hospital bills and continue household chores.
At 8 p.m., he calls me: “I’m slipping! I’m slipping!” He has slid half-way out of his chair and can’t get back up. I can’t budge him, so I slide him to the floor and as I have done before, I call the fire department. Two firemen appear, pick him up, and deposit him in his bed. Dad is sheepish about his slide. “My bottom was sore so I slid down in the chair.” We both smile and say goodnight. Another busy day ends at 9 p.m.
The preceding exemplar highlights the nonstop pace of the caregivers and the tedium of repetitive care. Both of these factors contribute to ongoing increased fatigue and decreased stamina, especially in caregivers who, like myself, are in their 60s, 70s, or even 80s. Stevic-Rust (2013), a caregiver herself, acknowledges that caregiving is hard work and can be exhausting and overwhelming.
Coping Strategies for Caregiving Challenges
I embraced the following coping strategies to deal with the challenges of long-term parental caregiving.
Coping with Psychological Challenges
- Vented my feelings. I shared care-giving experiences and frustrations with close family members and friends.
- Found humor in the situation. My father was almost deaf and, as a result, I had many funny conversations with him.
- Engaged in escapist activities. After my father was asleep and when I was not too tired, I watched current movies and The Great Courses® DVDs from the Teaching Company.
- Made future plans. I planned a trip to Spain for the time period I was not caregiving.
- Prayed. I had only one prayer: to be given the stamina to continue caregiving.
- Found a retreat. The public library became my balm. I would find a quiet cubicle and take in the silence.
- Lunched with family and friends. Occasionally I had lunch with relatives and with high school and professional friends who lived in the area.
- Embraced family visits. I looked forward to relatives’ visits as a welcome break from daily routines.
- Empathized with my father. Although I occasionally became upset with him, I also felt deep compassion for him and for what he had to endure.
Coping with Physiological Challenges
- Walked regularly. I walked, on average, close to 2 miles each day whenever I could.
- Ate healthy. I grew up with healthy food habits and tried to continue them.
- Visited physicians as needed. I kept my routine doctor and dental appointments and sought medical advice when needed.
- Took preventive measures. When I felt a cold coming on, I took echinacea and ate more foods high in antioxidants.
- Slept 7 to 8 hours at night. Because I was tired at bedtime, I usually slept well. This sleep routine was possible because my father rarely disturbed me at night.
- Practiced good body mechanics. Although I did sustain some mild tendon and muscle strains, I was always aware of good body mechanics.
Coping with Unrelenting and Repetitive Caregiving Challenges
- Hired caregiving help. This was the most helpful and useful coping strategy. Gia helped care for Dad for 3 years. She made many of the other coping strategies possible.
- Took shortcuts and multitasked. Many household chores were done less frequently and less perfectly. Meals were often take-out rather than home cooked. Yard work was hired out. Leisurely trips to town were combined with one efficient trip.
- Shared repetitive routines. Because Gia and I shared these routines, they seemed less tedious.
- Took advantage of offered help. When neighbors or friends offered help, especially to move Dad or take him to doctors’ offices, I was very grateful.
- Anticipated Dad’s needs. Pots of water were on the stove for his dysphagia. Custard was in the refrigerator for his bad stomach. Benadryl and corticosteroid cream were on hand for his itching. Pills were laid out for the day.
Although caring for my father was at times hard, I had it easier than many caregivers. I had stellar help; I slept most nights; I had the help and support of family and friends; my father never developed severe dementia; and my caregiving time was short compared to those individuals whose entire life is devoted to caring for ill or vulnerable family members.
My father celebrated his 100th birthday on July 11, 2007. All of his children, grandchildren and their spouses, great-grandchildren, and daughter-in-law were there. They came from Virginia, South Carolina, California, and Washington. Dad beamed. His eyes sparkled. He became witty, he became playful, and he became philosophical. He told me that he was satisfied with his life and had met all of his goals. “You’re born; you live; you die,” he said. And so he died peacefully, on November 29, 2007, leaving behind a legacy of a long life well lived.
- Anderson, D.G. & Fallin, A. (2012). Family health risks. In Stanhope, M. & Lancaster, J. (Eds.), Public health nursing: Population-centered health care in the community (8th ed., pp. 624–646). Maryland Heights, MO: Mosby/Elsevier.
- Boertje, J. & Ferron, L. (2013). Tired of caring? You may have compassion fatigue. American Nurse Today, 8(7), 16–18.
- Carpenter, H. (2013). Health, safety, wellness. When caring hurts: Compassion fatigue. American Nurse Today, 8(3), 54.
- Cowan, M.K., Gross, M., Kaiser, L.M., Hatton, D.C., Westley, C. & Fletcher, K.R. (2010). Health risks across the life span. In Stanhope, M. & Lancaster, J. (Eds.), Foundations of nursing in the community: Community-oriented practice (3rd ed., pp. 350–383). Saint Louis, MO: Mosby/Elsevier.
- Green, A. (2013, September3). A trained eye: Aging is a struggle, for patient or caregiver. The Washington Post, p. E4.
- Hrabe, D.P. (2013). Uncover your inner nurse athlete: Amp up your energy!American Nurse Today, 8(1), 8–10.
- Newcott, B. (2012, September19). The silent cry of the caregiver. AARP: The Magazine. Retrieved from http://www.aarp.org/home-family/caregiving/info-09-2012/the-silent-cry-of-the-caregiver.html
- Silva, M.C. (2006). A day in the life of an oldest-old father and his caregiver daughter. Journal of Psychosocial Nursing and Mental Health Services, 44(7), 13–16.
- Stevic-Rust, L. (2013). Greedy for life: A memoir on aging with gratitude. Lexington, KY: Author.
- Townsend, T. & Anderson, P. (2013). Are extended work hours worth the risk?American Nurse Today, 8(5), 8–11.