Trying to provide, understand and accept varying degrees of respect and dignity for my sons has been a struggle for many years. Recently this concept has become more challenging for me. Am I old school? Burnt out? Has my expectations of others changed over the years? Whatever the reason, I am having a difficult time.
Let me explain a bit about what is happening. As you all know budgets and support systems for those living with physical challenges has become extremely limited. I spent more than a year and a half advocating for two of my sons. I made phone calls, wrote emails, filed appeals, and even went before a judge to request appropriate quality (not cheap, flimsy) wheelchairs. Chairs with specialized seating systems, with specific foams, upholstery, and supports to meet their personal needs. I am happy to say the judge sided with us and both of my sons were able to get their new seating systems. One of them received a much needed new wheelchair from a vendor with years of service and knowledge with seating systems.
I am sure I have mentioned before that because of the severity of the physical challenges my sons have they can’t sit in something plain and simple. Seats need to be of specific measurements and designs to accommodate their unique bodies and allow them to sit upright as much as possible with special trunk supports, headrests, and seat depth (especially when one leg is longer than the other or hips are out of socket). Many hours and trips back and forth to the supplier happen before the chair can leave the vendor and be taken home to be used. These manual wheelchairs are not cheap and the price tag can easily be $15,000 give or take a couple thousand dollars and even another $10,000 more if the user needs a power wheelchair.
Vomit on wheelchair
After all my advocating and feeling successful, this week I about lost it when one of my sons came home from his program with what appeared to be vomit on one side of his new chair. It wasn’t even his vomit but that of another client’s. It appeared that no staff had made any effort to clean up this mess. Instead of taking this son for a blood draw that was scheduled, I spent the time cleaning the chair where the mess was into the seat, seatbelt, tilt track, front axle, tires, and armrest. I was shocked that the paratransit company would even transport him home from the program with this mess. May I ask, what has happened to respect and the need to take care of specialized equipment?
About one month after the new chair arrived, I had to remove the foam back section to clean up food that was behind it and down into the back of the chair seat. This food was not the type of food I had fed my son at home. So, once again, why don’t people show some respect and clean up the messes that they have made?
Another area that has been eating at me is the way some of my sons arrive home and I find the poor quality of care they have received in the bathroom. One son had been coming home with the waistband of his underwear rolled and bunched under his tailbone and not pulled up correctly. How uncomfortable! He has become passive and doesn’t mention this to staff. When discussing this with him and sharing my thoughts that this is not acceptable care, my son stares at me blankly as if I am speaking a foreign language. Previously he would have asked staff to correct the problem. Has he lost respect for himself to not even say something? I am bothered that he must be uncomfortable because of careless caregivers.
Another son who uses diapers arrives home with some really unbelievable stories – diapers sticking outside of his pants for all to see, penis not even in the diaper (guess where all the urine goes). Diapers on inside out, or the other day with the back waist below his tailbone and the elastic leg opening up his crack. Insane!
Another area that annoys me to the point of anger is those large sick-looking pinkish chux sticking out everywhere on the seat of the wheelchairs. I understand it is wise to use them to help protect the upholstery but why can’t they be folded neatly and still give protection to the chair from toileting accidents? I would also like to suggest that caregivers place soiled garments in plastic bags in the physically-challenged person’s backpack and not tied on the handles of the wheelchairs for all to see. Another thing is to place urinals in the backpacks and not sticking up in full view. In my opinion this is equivalent to a person like myself walking around with a toilet on my back to show I use a toilet to eliminate human waste. I could go on and on with stories about this topic and I am sure some of my readers have some terrific stories to share as well.
I have always taken great care when dressing my physically-challenged sons to make sure their undergarments were on correctly, comfortably, and not showing for the world to view. I have always wanted my sons to be accepted in public. For some, their appearance from the severity of their physical disability makes it a greater challenge to be accepted even without being dressed in a disheveled manner. I have some sons who chose to dress in ways I don’t care for and that is their choice. However, for those who cannot make these decisions or help themselves with their care, it is my responsibility and the responsibility of other caregivers to be sure they are dressed comfortably and appropriately. For me, I would rather take a few more minutes to dress my sons appropriately, to take care of their wheelchairs and help them look presentable in public. It drains me emotionally to see so little regard given by others in this area of care and I pray that one day when I am feeble and need assistance, those who assist me will allow me to keep my dignity when I am in public and not advertise to everyone that I am now in diapers.
Soiled garments on back of chair
Urinal for all to see
