Thankful and Tired: A Caregiver’s Reflection
Lately, I have been inquiring a great deal about issues related to my father's health challenges. I have been checking the effects of medications while also consulting with my father's primary care physician and neurologist. One thing we must guard against is what might be called self-medicating, self-diagnosing, or, worse, playing doctor with somebody else's life.
What I have not considered enough is the toll all of this has taken on me. There is the understanding that this experience is not uncommon for caregivers, but while that knowledge is not comforting, it does prevent any expression of “woe is me.”
Since January 2024, when my father got lost while driving his car (the fourth time) and later experienced a severe urinary tract infection that required four weeks of hospitalization and rehabilitation, I have been intimately involved with his care. In 2024, it did not require a great deal of my time on a daily basis, only the need to pay close attention, because he was still able to manage many things for himself at home with help from caregivers a few hours each week.
Fast-forward to July 13, 2026, when my father had hip replacement surgery. The surgery itself was successful, and my father no longer has the debilitating pain from bone-on-bone osteoarthritis. However, an unexpected outcome of the surgery, the hospital stay, which included delirium, being placed in restraints, and other post-operative challenges, was that he became more delirious than clear-minded. He is not eating normally and needs to be fed. He has also become incontinent.
On Monday of last week, my father had two days of calmness and clarity. We viewed this as him finally "turning the corner." He even asked when he needed to go to the restroom, something he did more frequently after returning home from the hospital. Unfortunately, we've not seen continued progress from those two days.
As difficult as it is to have to change and clean up after bowel movements from a grown man—something I have learned to do almost as quickly as his caregivers, it would be manageable if it were not for the delirium, which sometimes makes helping him more difficult. For a soon-to-be 90-year-old man, he is still very strong, especially his grip.
As difficult as all of this is, the hardest thing is watching the decline of my father, someone whom I have always regarded as Superman, and someone who has been independent ever since my mother died 23 years ago.
I am an only child, and accustomed to doing things alone and living somewhat in isolation with respect to handling his affairs. Lately, however, I have been overwhelmed by that isolation, in particular times of struggling to help my father when he is not cooperative. The bright spots have been my wife and my father's caregivers. My youngest son is also able to help for a couple of hours one day a week, as he is raising his own family and is a schoolteacher with leadership responsibilities at his high school.
People from my church family are willing to help, but my dad has reached the point where he needs more than someone sitting with him, offering conversation and companionship. He has arrived at a place where sustained conversation is no longer possible. There are mostly exchanges in which he is sometimes coherent and conversational.
The most difficult emotion I have is guilt for allowing him to have the surgery.
Before the surgery, even with the extraordinary pain, he was able to do some things for himself. He needed 3,000mg of Tylenol every day to help manage the pain, and sometimes even that did not help. He could not take anything stronger because stronger medications interfered with his dementia.
Of course, there is no way I could have anticipated this outcome from the surgery, and no one specifically advised me that complications could occur to this extent. Nevertheless, looking at my father every day, sometimes visiting his house three or four times a day, reminds me that what he is experiencing was an unintended consequence of the surgery. I know I will have to live with feelings of guilt, even though I made the decision based on what we knew at the time and with the hope of relieving his severe pain and improving his quality of life.
Of course, we continue to hope for his return to something called “baseline.” This is the condition a person was in before a major event such as surgery and a hospital stay. My research indicates that older adults sometimes do return to that baseline, but it can take anywhere from a few weeks to months. The other data point is that some people never return to baseline.
As of this writing, we are five weeks post-surgery, and he does not seem to have made significant progress overall. Then there are the moments when I go into his room in the middle of the night and find him moaning, speaking incoherently, sometimes singing, pulling on his sheets, and throwing pillows off the bed. Sometimes all of this happens after he has urinated or had a bowel movement, which requires cleaning him in the middle of the storm of delirium.
To offset the cost of private-pay care because of inadequate and reduced Indiana Medicaid attendant-care hours, I take some day, evening, and overnight shifts caring for my father. (This video highlights the Medicaid issues) During some of those caregiving times, my father's behavior makes him almost unrecognizable from the person I have always known him to be.
My heart is broken. I am tired, often feel unable to help, and that feeling is compounded by a lack of emotional relief. So I pray that he improves and is able to experience the better quality of life we anticipated following his hip replacement surgery. We continue to trust in the Lord's help, rely on the expertise of the home care team and health professionals, and make the best possible decisions.
But I recognize that caregiving is not only about what is happening to the person receiving the care. Something is happening to the caregiver as well. I take day trips to refresh myself and do some enjoyable things. I take bicycle rides and do astrophotography as the weather permits. Taking multi-day trips has not been possible for many months, but again, these are not uncommon challenges for caregivers such as myself.
I remain thankful and hopeful.
