From the Editor: The Personal Side of Incontinence

More than 50% of all persons 65 years and older experience incontinence in some form, regardless of care setting. A similarly high percentage of men become incontinent after prostate cancer surgery and subsequent radiation, although the symptoms may not manifest immediately. The risk for incontinence increases in the presence of diabetes. 

One of these men is my father. 

Two years ago, I introduced readers to my dad (then 85 years old, with diabetes type 2 and 18 years post prostate cancer treatment using radiation) and his incontinence issues. At that time, he admitted he needed Depends® (Kimberly-Clark Corporation, Neenah, WI) because of what he was calling leaks. I applauded his proactive approach, both in telling me and for addressing the situation before it got out of control. Over the course of the following year, he began to overflow the Depends at night. We scheduled a visit with a urologist. At the initial visit, my dad (who often cannot “go” on demand) had to urinate and then his bladder was scanned for residual urine to assess his capacity to empty. In a nonscientific term, it sucked.

My dad was diagnosed with overflow incontinence and offered 3 options: 1) have a catheter placed to rest the bladder and ensure complete emptying, 2) learn how to self-catheterize, or 3) undergo a transurethral resection of the prostate (TURP) procedure in which his prostate would be shaved back and his urethra would be expanded to enhance urine flow. He opted for the indwelling catheter, the tube emptying into a small, discreet bag strapped to his leg that he could drain into the toilet. 

The entire scenario distressed him. The strap was uncomfortable. The tube cut him in delicate places. Already unsteady on his feet, he had to shakily position himself at the toilet to drain the urine. He underwent further diagnostic tests (a urodynamic study and MRI). He remained hopeful this all was temporary, that somehow he would be miraculously cured of this albatross because, as he put it, “I’m usually an up sort of person, but this really has me down.” 

Two weeks later we were back at the urologist for follow-up and the test results. My dad was told he had a neurogenic bladder, a dysfunction related to disease of the central nervous system or the peripheral nerves that help control micturition. In my dad’s case, his problem was most likely a direct result of the radiation provided 20 years prior for his prostate cancer and neuropathy related to his diabetes. Regardless, there was no way my dad could control his urination (he only infrequently felt an urge to go and even then was not emptying completely), and there was no cure (TURP surgery was pointless). He ever-so-slowly came to realize he was going to be this way “forever.”

With this news, my dad opted to self-catheterize to alleviate the issues created with the indwelling catheter. Most folks (especially men) winced when he told them of this choice. He reassured us all he felt no pain (which made sense, given he had no sensation), and dutifully learned how to properly clean, prepare, and insert the coude catheter “with the hook up, facing you.” He lost all sense of modesty and insisted I watch to make sure he was catheterizing correctly. He had been offered a straight catheter, but because that was not what the nurse initially used, he refused what might have been a slightly easier option. (A people-pleaser, the man never wants to buck authority). Grateful to be free of the irritating catheter bag (but still far from his happy self), he endured.

Within 2 weeks, he “just didn’t feel right” and was running a fever; we suspected he had developed a urinary tract infection. We contacted the urologist, who said there was no guarantee my dad had an infection and that it would be hard to test or culture for one, given my father was introducing bacteria every time he catheterized. The fever subsided, but soon returned. This time we insisted he be seen. My dad’s urine culture was positive, and he was put on an antibiotic. The low-grade fever, feeling unwell scenario played out at least 1 more time. We secured a part-time caregiver to assist with some activities of daily living and to keep an eye on the catheter situation. Within a matter of months, my 87-years-young dad was smacked in the face with the vagaries of aging.

On Election Day, my dad’s care provider called me (and 9-1-1). My dad had fallen. She had found him in his apartment, lying on the floor near the door, apparently for some time. We desperately tried to recreate when people had last spoken to or seen him. He was half-dressed, with blood near his hip (the blood turned out to be from his urine). He was conscious but completely confused (he still cannot explain what he had been doing before he fell), although he was lucid enough at the hospital to coherently answer questions. “Do you know who the President is?” the intake nurse asked. “The one in office or the one we’re electing?” he responded. Incredibly, he had no broken bones but was admitted for rehydration and observation; a few of his blood levels, including his sugar, were awry. He was back to an indwelling catheter, the hospital-kind (no leg straps but with the huge bag). He was admonished every which way NOT to ambulate on his own until we were sure he had the strength, his loved ones now guessing this was not his first fall. 

After 4 days in hospital, my dad was discharged to rehab with a small indwelling catheter. He ignored the warnings about ambulating on his own and on his first night fell in an attempt to circumnavigate the bed to reach his phone. Then he crawled to the bathroom to pull the call cord. In the process, he managed to extract the catheter. He called me at 1:00 a.m. He told me what happened and said the nurses did not see the need to take him back to the hospital; they would reinsert the catheter after things “quieted down” (he had injured his penis), probably in a few hours. My dad wanted to know if I agreed with this decision. The clinician got on the phone and promised she was a registered nurse, so I reassured my dad that since most probably a nurse also would reinsert his catheter if he went to the hospital he was okay where he was. I also told him to stay put, and to instill some humor in the crisis, I added, “Let’s try to avoid calls in the middle of the night about your penis.” He has become somewhat more cooperative about making sure he uses his walker even for the shortest of distances.

As I write this, my dad is home from rehab with full-time assistance and adjusting to his new reality of indwelling catheterization. We are looking into a few solutions to the catheter-associated discomfort. His live-in (for the time being) CNA will monitor his ambulation, ensure his nutrition (he doesn’t have much appetite), and assist with his hygiene. Despite the aforementioned events, he is a stickler about his appearance; he trims his hair with cuticle scissors between haircuts to tame his wayward comb over. 

As part of therapy, he was asked if he feels so depressed that (and I am paraphrasing) he is ready to check out from life. He proudly told me what he answered: I’m not going anywhere yet. I have 6 great-grandchildren. Thank goodness.

I share this story with clinician readers to remind them of the consequences and repercussions of incontinence, both the physical (catheterization, infection, the discomfort of the apparatus, the related falls) and the psychological (the loss of dignity, the awareness of personal limitation, “this isn’t me”) adjustments. Although some research may state incontinence is not a factor of age, it remains a common concern for the elderly, complicated by increasingly present clinical and emotional comorbidities and the lack of cures. I keep reassuring my dad, who repeatedly expresses his reluctance to become a burden on our family. You are our delight, I tell him. Incontinence is not fatal, you are not in pain, and even with this condition you can have good quality of life. It is just a horrible annoyance, I tell him. But, oh, what an “annoyance” it is. 

This article was not subject to the Ostomy Wound Management peer-review process.