(Photo Description: A black and white photo of a hand making the sign for ‘I Love You’ in American Sign Language.)
Have you ever been in a situation where you’ve procrastinated over doing a certain chore or task that you know you need help with, but don’t want to ask? You know… like redecorating the house. Or going to pick up that new mattress, which you desperately need but it doesn’t fit in your car. I believe everyone experiences this at some point. We don’t want others to feel like they have to go out of their way to help us do something that doesn’t benefit them. Don’t want to be an inconvenience and sometimes…. we just don’t feel like having company over.
In the world of illness and disability, these are all too common feelings. To add to this, we often find ourselves in a seemingly never ending fight for independence. You only have to go to the shops to buy something as simple as bananas and you find yourself being guided across roads with your white cane… without being asked. Or someone has ‘kindly’ pushed you into a building you don’t want to be in. Or packed your bread underneath the heavy bananas. Squashed sandwhiches for lunch anyone? So when you are confronted with deterioration in health, and you know you need help. It’s not easy to ask for.
Way back when I could walk and used a white cane, I was frequently ‘helped’ to cross busy roads. Often finding myself in an unfamiliar surrounding I didn’t ask to be in. I’ve also had many people ask my sighted guide, or my carer pushing my wheelchair what I want and how I want it. So a few months back, when I handed in my service dog and knew I would need help from a nurse, I waited until I was physically and mentally broken before approaching someone for help. I was sleeping til almost 11am and by the time I had showered and dressed, I needed to sleep again. I was getting nothing out of my day and heading towards depression. This had to change.
I was pleasantly surprised by the speed in which my call for help was dealt with. I filled in an application form on a Monday, by Wednesday my first nurse was standing next to my bed, ready to help me get up and dressed.
I had hardly slept the night before. My head was spinning with all kinds of thoughts and questions. What if we don’t get on well? How am I gonna explain where everythibng is and what I need while I’m still half asleep? Is it gonna be painful? Is it gonnna feel uncomfortable and awkward having someone wash or shower and dress me? I should have just slept without freaking out. By the time they were done helping me Wednesday morning, it felt natural. As if I’d had that help for years already.
I get three visits per day. In the morning someone comes to give me meds, get me out of bed, help me pull on PJ pants and ensure I safely get to the bathroom to brush my teeth.
I then have about 90 minutes to eat breakfast before the same nurse comes back to help me wash or shower and get dressed. I can choose each day whether or not I want to shower or wash and although they help me with physically taking clothes from wardrobe to bathroom, I make all the choices. After showering, they even help me with deodorant and body lotion. They’ll put cream on any irritated skin or sores and occasionally I ask them to rub a painkilling oil into my muscles. In the evening, someone comes to put drops in my eyes and give me evening meds.
There are 7 nurses I see regularly. 4 of which alternate the morning shift, the other 3 alternate the evening shift. They’re all female nurses. Every one of them is friendly and treat me as an equal human being. They don’t just quickly do their job in silence, we have great conversations. They regularly ask me how I’m feeling health-wise and we talk about regular stuff while they’re helping me. Anything from the snotty weather outside, to which game I’ve played on the Nintendo today.
The best parts of having nurses help me, is that I don’t feel like my independence has been taken away. Though they come to help me save energy so that I can get through a whole day without sleeping, they allow me to do whatever I’m not comfortable letting them do. Equally, it doesn’t feel wrong or awkward asking them to do something I know I struggle with. Seeing their faces every day and having a conversation with them, brings positivity into my life. Even on the days when I am in pain and super grumpy, they put a smile on my face.
Many of you know that Jessica , my caregiver shares a house with me and you’re probably wondering why she’s not doing everything the nurses do for me. Well… in every family household where there’s a chronically ill or disabled person, there’s a caregiver. But that caregiver is also a wilfe, a husband, sister, brother, father or mother. Just like Jessica is also my sister and my best friend. Balancing care while being a sister, a best friend and working a job is a lot. There’s nothing wrong with asking for extra help so that a healthy balance between care and family life can be maintained.
When asking for help, there’s no right or wrong way of getting it. As long as it works for you and everyone around you, that’s the most important thing. So don’t wait until you get to a point of unhealthy before you ask. There’s no shame in needing help. If I had known before what I know now, I would have asked for help much sooner. Would have saved both Jessica and I much pain and stress.
CRS Life 