The longer I am in this field the more I realize that in order to truly change the culture of Long Term Care, we must change the way those who are living within the system are viewed. Regulations can be changed. Environments can be improved upon. Staffing levels can be reasonable, but until society begins to see through the physical disabilities and age to the person underneath, such changes, though important and well meaning, is like treating the symptoms rather than curing the disease. This point has become so much clearer to me since I began working in private care.
As an independent caregiver, I have the freedom to do the job as I see fit within very wide margins. Being pretty terrible at setting work boundaries, I find myself in many roles throughout each shift; CNA, housekeeper, family confidant, driver, personal shopper, cook…the list goes on and on and each shift brings new surprises. There is only one client and yet for me it’s every bit as challenging as working in a facility. Working one on one with my client has opened my eyes to how people view those living with disabilities outside of the four walls of a facility. Sometimes, it’s not very pretty.
My client loves baubles. She loves bright colors, and make up and having her hair done professionally. Her appearance matters to her. It always has. Religiously, once a month she goes to a particular salon and has her hair washed, colored and styled. She has been doing this with the same stylist for five years. Now, this particular stylist knows that my client suffered an immediate and life altering change to her health sixteen years ago. She sees the effort it takes for her to transfer from her wheelchair to the shampoo chair and back again. She knows that on my clients tougher days, when it takes all she has to get dressed, it is the idea of her beauty days that pushes her through that pain. I’ve told her that myself.
It’s a splurge. It’s not a cheap salon and this hair stylist is always tipped well. Getting beautified is one of the few good things that has remained a constant from the time before my client fell ill. It takes her more effort, but it is well worth it. So you can imagine my fury when I received a call from my co-worker informing me that this hair stylist would no longer be taking appointments from my client because she was fifteen minutes late. This hair stylist to whom my client had formed an attachment, despite what I considered to be her snarky attitude, who had NO problem gushing over her tips and taking her money, was put out. She did not bother to tell this to my client. No. She told it to my co-worker who, like myself, does not have the heart to tell her.
Look. I understand that we all have lives and a client being late for an appointment can cause inconveniences to whomever is providing a service but if you are incapable of taking on those with physical challenges, then DON’T TAKE THEM ON. When my client is going to be late for appointments, we call. After so many years, the very least she could have done was have enough respect to have a conversation with her about it.
It was such a clear example of apathy. I realize that it’s not cruelty that causes such slights, but the damage done from it is the same. It’s an example of the self-centeredness that we all have within us in one form or another. Even those who are closest to my client are subconsciously guilty of this thinking. How much is my client going to slow them down if they take her with them? Is there room in the car to pack all of her necessities? Is it worth the effort when she will be so exhausted the next day?…they see all the obstacles and none of the opportunities and in so doing, they diminish her humanity and reduce her to little more than “person with disability”.
I look at people through the lens of a caregiver. There is not a single person on the face of this earth who doesn’t have obstacles or challenges. Most have the luxury of wearing them on the inside. The downside to that is that too often, they forget those wounds exist and begin to convince themselves that they are a part of a group lucky enough to be normal. Allow me to disabuse those of you in that category of that notion. There is no normal. It’s imaginary. The only thing that separates you from those in my care is circumstance or age.
If I had to pick one lesson that I would like people to learn from my posts, it would be this: We are all human. Separating yourself from the way you view those in our care may make you feel safer or more comfortable but you do yourselves a disservice. One day, you will age out too, if you’re lucky enough to maintain your health. Ask yourself this: How would you want to be seen? As an “invalid”? A burden? As someone who has “outlived usefulness? As a bed filled to keep census up? As a cause? As part of a group to be pitied?…I wouldn’t. I would want to be seen as a person first. As Alice. And I would hope that all of those who were fighting for my rights would take the time to actually ask me my opinion of the system and what I think would be an improvement. I would hope my loved ones would see me before my disability and I would hope that an overpaid hair stylist would have the decency to tell me to my face that she no longer wants to do my hair.