In the Pivacy of Your Own Home

Recently I spoke about the essential technology required for paraplegics, quadriplegics and others with neurological disabilities. The non-exhaustive list included catheters, pant hooks, leg bags, exam gloves, lubricant, and suppositories and enemas. There are enough intimidating words in that list to make anyone cringe but it is all necessary for health and even survival.

Pain is nothing new to someone with a disability and the pain involved in using the above technologies is, for the most part, controllable by the person using that technology. It is fair enough to say that some people may have trouble ripping off their own Band-Aid, popping a pimple or other unpleasant task one does for themselves. But, usually if something needs to be done a person just simply learns how to do it. The same can be said for these technologies and procedures.

Where the problem really begins is when the pain is not controlled by the disabled individual. My statement still stands true, that the pain is mostly controllable by the person using the technology, but with limitations in dexterity, movement, and strength it often is used by someone other than the person in need of its benefits. It is the caregiver who is now in the majority of control of that person's experienced pain. Though they just want to get the job done, and to help the person that is in need, the caregiver still must have the understanding that what needs doing must be done, regardless of the discomfort it may cause.

A good caregiver understands the balance point between inflicting pain and completing the task at hand as very often the intensity with which a job is done coincides with the time it takes to complete it. While in rehabilitation it was frequently requested of me that I'd be a guinea pig for students working on their practicum. Most often that involved being a practice subject for student nurses to learn to catheterize. For the most part this was alright with me with the exception of one female student nurse.

Almost all of them had a hesitancy which prolonged the discomfort until the catheter would actually enter the bladder, and the worst of it would be over, but this one student's shyness caused her to have a very difficult time getting a firm hold of me and of the catheter. While she was struggling I was in discomfort both from having a full bladder and from the rubbing of the catheter on the sphincter of that full bladder. I attempted to ease the tension of the moment with a comment meant to both jokingly put her at ease and convey importance of getting the job done. It was not received as well as I had hoped.

The point is that she had yet to reach the stage of confidence and urgency needed to complete the task efficiently without causing unnecessary prolonged discomfort. As well, I had yet to find the best way to lighten the situation without causing harm to the necessary border between professionalism and familiarity.

So, how does a disabled individual deal with the fact that someone else is performing such procedures to their body such as insertion of foreign objects into out orifices? Some, I know, are grateful to have the support of their significant other or parent and thankful that the number of people involved in their most private activities are limited to very few. Depending on the couple or family, this can be a strain on the relationship. For a couple, nothing says romantic like a medical procedure before bed, though some might argue it strengthens their relationship. As for children with a disability, growing into teenagers and processing adolescence, privacy desires are a concern. There is also the question of what to do if the caregiver becomes too ill to perform those duties or is unavailable for some unforeseen reason.

The alternative is to have the care provided by someone else or some other organization. Some of the consequences of that include a set of caregivers with built-in backups but rotating staff, both scheduled due to shift rotations and unscheduled due to staff changing positions, quitting or new staff being hired. Just as one employee becomes familiar with your body and its current behavior their shifts are over and they begin days off while someone else comes on. Then, the new person needs to be briefed on the situation and adapt their care based on how things have been going, recently. Of course, some caregivers are more skilled than others and, unfortunately just like when I was in rehabilitation, you can often determine how good of the day you will have based on who is working because there is a great likelihood how good or bad you will feel by the job they do. This is not the way it should be, like it or not. We're dealing with people who are dealing with people. People with good days and bad days, varying personalities, and different preferences of doing things, and of how things are done to them.

Regardless of a person's choice of caregiving structure, it still comes down to the processes of catheterization, digital stimulation (search the Internet for that if you wish to know more about the process of bowel care because I certainly won't be photographing that to post on Challenging Reality) and other privacy invasions occurring in your own home in order to maintain health and survive. Have I mentioned that requiring the use of the wheelchair is not our biggest problem?

While the routine is at first stressful, modesty erodes and it becomes normal. Occasionally, during difficult bouts from sickness or other irregular health fluctuations, the physical pain increases for a time while the mental strain grows right alongside it. The result is productivity and motivation decreasing in tandem with perceived usefulness and optimism for at best a return to how things were before the bout of diminished health.

In The Simpsons episode "Homer the Smithers", Homer fills in for as Mr. Burns' assistant, Mr. Smithers, while he was away on vacation. Homer's ineptness forces Burns to fend for himself. By the end of the episode Burns has learned his lesson and says, "Being waited on hand and foot is okay for your average Joe, but it's not for me."

With the life of automation and ease that most of us seek, I ask you to take a minute now to be grateful for the things that you can do for yourself. Do not take for granted the ability to wash dishes, mow the lawn, shovel snow,  pump your own gas or take only 5 minutes to independently use the washroom, in the privacy of your own home.