Old patterns are hard to break, and if you leave things too long, it can feel too awkward to bring them up.
Even when someone is a paid professional health care worker doing their job, it can be hard to approach them objectively, dispassionately and unapologetically to ask for changes. Even mild ones. There can be an established feeling of gratitude owed, of not wanting to “ruffle feathers”, or put someone out. Carers are, obviously, humans too, and as we grew closer to them, and they go from friendly to feeling like actual friends, it can become harder and harder to let them know when something they are doing is not to your liking. You have the right and the responsibility to assert your boundaries, and express your expectations and needs. Although it can be awkward at first, when done respectfully and in the right spirit, this kind of conversation will actually lead to a healthier relationship with your carer. This goes equally when communicating with someone who is an unpaid or unofficial carer such as a loved one.
“I don’t where the sugar is now.”
A carer comes in to the family home, and believing themselves to be doing something “a little extra” for their client, while cleaning up in the kitchen they reorganise the contents of the kitchen bench to an arrangement they think is more user-friendly for access to the kettle. The client comes home, moves the sugar back to where it goes, but then during the next shift the “Dance of the Sugar Bowl” continues, and so on it goes until the client gives up and accepts the new place for the sugar. Might sound like a small thing. Might even sound like a petty thing to question. But it isn’t.
We know that having a sense of agency and autonomy is important for everyone, but that goes doubly for people with disabilities. Feeling out of control, feeling uncertain and like things are changing without your knowledge or permission is very disempowering.
Your home is the place you should feel most in control. This should be the place where you can come to, when the rest of the world seems like a whirling mess, and you can let your shoulders drop, your guard down, and feel at ease. If, instead, you feel like you never quite know what little (or big) change might be waiting for you, then home becomes… well, less homely.
Minimising variables is an idea people with disability know all too well about. Outings can require military-like planning; access to venues, bathrooms, equipment, everyday objects like wallets and wet-wipes. But your home should be where that kind of thinking is able to be put aside.
“They make me feel uncomfortable just vegging out and relaxing in front of the TV.”
A couple enjoying their weekly ritual of watching the new Game of Thrones episode are orbited in their own bedroom by a well-meaning carer dusting knickknacks on the window sill for the second time that evening. The couple would happier if the carer could work in another room just for the duration of their favourite show.
Another woman with MS likes to have lunch and watch Ellen. Her carer likes to use that time to fold washing but she talks through the whole the show. She thinks the carer may feel the need to provide company right through her shift, but the woman with MS would rather watch it by herself.
If a carer feels like they should be “keeping themselves busy” or “providing company,” they can actually be inadvertently invading people’s private time, personal space, and causing annoyance and unease.
“I need a carer, not a P.A”
A women with MS goes into her phone calendar to find new entries in there she never inputted. Another well-meaning carer (because let’s face it, most of them do mean well, they aren’t in caring for the huge pay packet) wanted to go that “extra mile” for their client so they added in events on their schedule.
A gradual increase in disability comes with it the inevitable decline in capabilities. However, you need to be empowered to feel you are still in control of your life, in as much as anyone can. If you choose to “outsource” an activity to a carer due to not being able to do it yourself, that is one thing, but for the decision to be made on your behalf, without prior consultation, is another entirely.
“When I ask to do certain things in with my support hours, they roll their eyes or just make other suggestions.”
Support workers often work with a variety of people with both physical and intellectual disabilities. And sometimes they can confuse their approaches and how much influence they should be making into a client’s decisions, or underestimate how much agency over their own time someone deserves. If you want to buy a lottery ticket, pick up some vino at the bottleshop, or visit the strippers one shift, these are choices you can make as an adult. If your support worker or carer is being paid to assist you in interacting with the community, they only have a right to refuse to partake in something if it goes against their own personal safety, not if they just don’t think it’s a worthy use of your time, or theirs. Moral and societal judgements should be able to be put aside, and if they aren’t you have a right to complain or make changes.
So What Can I Do?
Clear communication, setting out your boundaries and expectations.
Dr Sally Shaw, MS-specialist Psychologist recommends setting clear expectations from the onset. Some clients have reported great success by making a list that they present to any new carers. Not so much “rules” but rather guidelines on how this all can run smoothly and everyone wins.
What if it feels too late for that?
You’ve had a carer for weeks, months, even years now. You’ve adapted how you conduct yourself in order to put up with or accept these little disappointments and uncomfortable habits? Can you still say something?
Well, the answer is, yes, it is never too late. If you can treat people with respect, care and consideration, you will be able to find a way to communicate your needs. Could be a quick conversation over coffee, could be in a kindly worded email if face-to-face feels too intimidating.
Open a dialogue with a new or existing carer/support worker about how you would like to be communicated with. Empower them with your knowledge as to what it feels like to have someone in your space and how you would like things to work. For a new worker these boundaries can be established at a meet and greet. For an existing and potentially long standing care or support worker- this can be done over a cuppa and phrased as a new direction you would like to take and how you would like that to look and why it is that they play a key role in helping you to get there.
Never underestimate the power of communication - people are not mind readers and often don’t stop to think of the implications of their well-meaning assistance.