Let’s talk caregiving

G’day, friends and welcome to another week and another post! If you are new, hey there, I am Rhi, I live in Australia and have Muscular Dystrophy. If are have been here before, welcome back!

I have been writing posts for almost 3 years now, and I have never done a full post on caregiving!

It is common knowledge that every single one of us in our lifetime, at some point, will need an extra helping hand with day-to-day tasks. For some of us, it is sooner than others, or for a fleeting moment, if you have broken a bone or had major surgery. Others may need help in their later years. Heck everyone needs a hand with something practically every day! Like opening a bottle of alcohol on a Friday evening anyone?

I have needed some form of caregiving ever since I was a child. From getting changed, tying up my hair, putting on shoes, helping up a flight of stairs, and helping down 23 flights of stairs at 5:30 in the morning(yes, that was such an enjoyable experience! *still cries into a pillow).

As I have got older, the number of things I need help with constantly evolves as my condition progresses. I have never been vulnerable with telling you all how much I need help; however, I am giving you just a little extra for transparency and hoping people feel less alone in their caregiving journey. Don’t worry. It won’t be too TMI because people I know are reading this, and nothing is worse than TMI!

A photo of my brother carrying me across sand. Our backs are to the camera
will always be one of my favourite photos

For me now my range of things I need care for/ help with include; Getting into shoes with zippers and laces, socks, swimwear, getting into and out of tight clothes. Tying up my hair, getting up off of most chairs, getting up and down stairs, getting in and out of high cars, doing seatbelts on bad days, getting off toilets in public, getting in and out of a bath, getting out of low beds when away, opening jars, cans, bottles when I don’t have my electronic opening utensils, Getting on and off the floor, grabbing things out of the washing machine, putting fresh sheets on my bed, mixing ingredients depending on what I am cooking, cleaning my windows and under my bed, and getting to and from appointments..

That is a list off the top of my head of the things I need help with. I know it may seem like a lot, but on any given day at home, for example, I could only need help with putting on my riding boots/ sneakers and socks, doing my hair and getting my dog to pick up my headphones I keep dropping.

When I am away from home, the range of things I need help with changes depending on the environment. Sometimes I need more help and rely more on others, and sometimes I am pretty independent. Having things constantly chop and change certainly makes life a little more interesting! But life needs to be interesting right?!

That is why it is so important to have someone you trust wholeheartedly and are comfortable with to be those extra pair of hands or muscle.

That is where primarily my mum comes in. My brother and dad also step in especially helping me get on horses or helping me off sand. My mum does about 99.99% of the caregiving. The other 0.01% comes from my brother and dad and my dog. Sometimes my extended family will jump in if my folks are at work for example. My grandmother had to come and help me after my horse accident for an afternoon as my parents had to work! Shoutout grandparents! Where would we be without them!?

Needing care can be something that can make you feel extremely vulnerable and feel like a burden to others, which is never a nice feeling. At times you can easily feel embarrassed, not to mention the feeling of still being a child often creeps back in. I am almost 24, and at times I still feel like that for many reasons, and I know so many fellow disabled humans can relate to that. Being spoken down to, not taken seriously, mixed with unemployment, plus needing help with day-to-day and sometimes very personal things that 5 year olds can do for themselves can often make you feel like a child, which can cause issues with your self-esteem if you aren’t careful.

However, with time, acceptance grows, and soon enough, those vulnerable and confronting things you need help with won’t bother you as much. Of course, there are good and bad days, but that is just part of the journey. I wish there was a quick fix to reach acceptance, however it is just one of those things that over time you adjust and it doesn’t become such a major thing in the back of your head all the time. However, a good caregiver makes all the difference in that acceptance journey because you aren’t made to feel like a burden, and you get used to the help quickly.

The role caregivers play is so ever important! How they treat you, respect, kindness, compassion, humour and seeing you as a human is everything!

Like I said before mum is my primary caregiver, its much better that way with some of the things I need help with. How she goes about caregiving is quite honestly the best. She never makes me feel like I am a burden, will never judge me, and will always make any task funny. I have lost count how many times we have laughed while she was helping me or even trying to figure out how to get into a disabled bathroom. Which i think every caregiver should do in my opinion, because it makes the whole process less uncomfortable and its not made to be a big deal!

However, the most important thing she has done for me while caregiving, she empowers me to make my own decisions. Whatever I need I can voice it and she won’t just automatically do things for me until I ask for something. When done right, I feel caregiving does still give you a sense of independence or autonomy, especially when you can dictate how you want something done. Dictate in a polite way of course!

A still of me being helped on a horse. Dad is holding my waist as I sit almost side saddle with the horse lined up to a mounting ramp. Two people are holding the horse steady.
Getting on horses is always a logistical effort but we manage!

However, I want to stress that whoever cares for you doesn’t have to be a parent. It can be anyone you feel comfortable with. That could be anyone from siblings, aunts, uncles, cousins, grandparents, and strangers. What works for one person may not be ideal for the other. You may even try several caregivers before you find one that you click with, or have multiple caregivers. And that is okay! There is no one size fits all when it comes to caregiving!

So with that being said, I want to provide some do’s and don’ts to all caregivers from the other side of the coin to help those who are first-timers or feeling overwhelmed when it comes to caregiving.


  1. always remember the person you are helping is human
  2. never just assume the person you are helping can/can’t do something
  3. Never take it personally if the person lashes out and is angry or annoyed. Half of the time, they are frustrated at the situation and loss of independence
  4. make it fun to ease the worry of the person and also to ease your nerves!
  5. take time out for yourself; caregiving/ compassion fatigue is a real thing!
  6. if you don’t know (especially with manual handling) if appropriate just ask!!
  7. Continue to have conversations with the person to make sure they are comfortable with what you are doing and to make sure that you are confident in how you are helping!

DON’Ts/ Remember!

  1. its not about you, it is always about the person you are caring for
  2. its their life and the decisions/ care provided is for their benefit not your convenience
  3. never treat the person like they aren’t human
  4. don’t dictate if you can, always give the person a chance to vocalise what it is they need help with, even if you know. Autonomy and independence is key.
  5. pretty much everything in the do section just reverse it.. don’t do the reverse.

Caregivers play an incredible and essential role, and on behalf of those of us who need ongoing care, we thank those who are fantastic at what they do because, without you, people like me would be completely stuck. Literally and figuratively.

For those of us who need care, remember it is your life and what you need should never feel like too much for someone. If it is, change up who provides that care. You should never feel like a burden, you are human and just because you need a little extra helping hand does not mean you are any less than anyone else. Remember everyone needs help at some stage in life, you are never alone.

a family photo on a cruise in 2020. My brother is at the front holding the camera and I am over his left shoulder, mum and dade over his right shoulder. We are all smiling at the camera
mum always looking out for me. you can see her hand going to steady me just over my brothers left shoulder (your right)

In time, I hope we can slowly get to a place where caregiving topics become less taboo and that we all receive the best care possible that makes us feel in control of our lives. Because at the end of the day, being able to live abled your way is all about being unapologetic in who you are. That includes being unapologetic in needing an extra helping hand.

Till next week my friends! Keep living abled your way!



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