We generally take for granted our lifestyle and whatever that entails.
For me, it’s a little routine orientated around my daughter (who lives with me part-time), my work, my friends and anything else that crops up. I’ve always made time to visit my mother regularly, in fact at least weekly. However, in saying that, she also knows that if I’m away or something crops up, I’ll call instead. There’s no pressure in any of those relationships. We have always been very fluid, spontaneous and flexible.
The dynamic changes when someone gets sick. The impact becomes even greater the longer the person is sick. And there is generally fall out. It’s like anything in life. Look to the ones who are in for the long haul, the endurance race, to lean on. They are the ones who will be in there still visiting you wherever you are, when you are still sick weeks later.
I am an endurance racer. It’s tiring but it’s in my makeup. It’s the reason I love social media – it’s a day in day out way of life. People ask me why – I say “that’s just me”.
Caring for someone when they are sick, is the same. It’s an endurance race first, but it’s oooh so much more than that also. There is a cost we forget. It’s a burden. And it’s expensive.
Don’t get me wrong, I have accepted this burden and expense but I’ve also found it’s not one many understand.. if I can share my story and help open the conversation, then this is a good thing, right? I hope so. This is not a whinge or a “look at me”. It’s a reminder that there are literally thousands, in our community, doing more.
Here’s my story.
My mother was rushed to hospital and stayed flat on her back for over a week initially. She pretty much couldn’t move. She was unwell. I visited once, sometimes twice a day. I was worried. I messaged my family daily and kept them informed. A few replied. My auntie called. My niece visited. After that first week, she was moved to a different section of the hospital and started to do a little better. By the third week, she was moved to a rehab hospital and I was visiting daily but not “rushing in”.
During all this, I was washing her clothes, checking her snail mail at home (she lives separately to me), paying her bills if needed, and keeping friends and family informed of her progress. This meant phone calls, visits and emails. It meant alternate routes, coffee on the way and car parks. Note – it meant frustrating times getting that car park, if you were lucky.
Towards the end of this first month, the rehab hospital decided to send her home. I stressed (I won’t talk about the emotional stress here too much – but I was not happy with this decision). She arrived home on the Friday and over that weekend I visited several times. I helped her shower and tried to get her out of bed but we generally had a tough time of it. By the Monday, she fell over and was back in hospital.
This time with a broken back. She went to emergency and then was transported to another.
For the best part of 24 hours, spanning two days, no one really knew where she was except me. What a burden. It was a heavy weight. There seemed no point kicking in a full family message as she’d just be moved again. But I worried.
Phone calls, running around, clean clothes, medications and other things had to be sorted on that first day. It meant time off work that started out as a phone call “I’ll be late” and ended with the whole day being taken. Fortunately I have a patient employer. The hospital wasn’t so patient. They wanted to know her full perscription list and receive the current copies of those drugs in their original packets immediately. There were two trips to and from the hospital as it seemed the first trip didn’t produce the results they wanted – which meant I didn’t understand the task and had to repeat it. It was all a blur. I was trying to think straight and perform for the hospital when all I was worried about was my mum. By this point (emotionally), I’d decided nobody else gave a toss. I’d sent messages to family members, but they didn’t respond. I found it sad.
The following days started and ended with a hospital visit. There were extra car trips to support this activity obviously and I had already noticed I was going through twice as much petrol as I normally do. I could see this was only going to get worse. Trips to the hospital, then to work, then back, then home, then to mum’s unit to collect mail etc and then start all over again. None of my nervousness around time off work or extra expenses was spoken of – I just did it – but emotional stress comes out in various ways.
Then there are the forms. Don’t get me started on the amount of forms you have to complete. About a person that you have a “rough” idea about… but really…
Mum has now moved into Respite. The rehab hospital wouldn’t have her any longer and we managed to find her a nice spot. It’s a 30-40 minute drive away from me. But let’s continue without going into the complexities of that extra travel distance for now.
As of today, I’ve been told I will need to be on call to locate a suitable nursing home, resting place, for mum. This is to move her out of respite. I have been instructed that during this process, I will need to call the advisor back as soon as possible (they expressed immediately) to review suitable placements found. I will then need to make myself available for nursing home visits, during the day, at the drop of a hat.
My immediate question was “can I do this out of work hours?“.
Their response… “No.”
The hidden cost of becoming a sudden carer is more than just emotional. It’s financial, stressful, challenging and it impacts every aspect of your current existence in ways that are unforgiving.
This story will continue.