A young caregiver and looking for tips that you can relate to? Read on. “I don’t claim to be an expert in caregiving. Far from it; I was a rubbish carer a lot of the time. But I’d like to have found some tips more suited to people of my age, so here goes…”
By Dawn Vance
Five years ago, my life was great. I’d just turned 30, had a good job, I’d just moved in with my boyfriend, had no kids, and was generally having an awesome time. Then my mum got diagnosed with an aggressive form of Lewy Body dementia…
The disease progressed quickly and I realised I was going to be a carer. As a person who generally had no cares in the world, it took me a while to get my head around the idea. I struggled to take care of house plants; the idea of being responsible for an actual person was terrifying.
I hadn’t had kids for a reason; I liked having no responsibility and the freedom to do what I wanted. There was no way I wasn’t going to care for my mum, but I was angry. Not with her – she didn’t choose to be ill – but I resented the fact that she was ill and that I had to look after her. I didn’t tell anyone how I felt. I didn’t want to come across as selfish. But secretly I was, a bit. I wasn’t proud of it.
I scoured the internet desperately looking for advice on caregiving. There’s no shortage of articles about it, but after a while they all merged into one. I got sick of hearing that I had to make time for myself. Easier said than done.
Don’t get me wrong – I don’t claim to be an expert in caregiving. Far from it; I was a rubbish carer a lot of the time. But I’d like to have found some tips more suited to people of my age, so here goes…
Hallucinations? Just go with it
Mum had really vivid hallucinations – good and bad. The bad ones were horrible; she’d often see a ‘scary lady’ staring at her. Once, we were sitting on the couch watching the news when mum whispered ‘she’s next to you. She looks angry.’ I knew it wasn’t real, but I’ve never moved so quickly. We couldn’t get rid of scary lady completely, but some things helped. She started to appear in the mirrored doors of the wardrobe, so we got rid of the doors. She’d appear dressed in blue, on the blue armchair, so we got a red throw to put over it. She’d appear in the window in the evenings, so we closed the curtains. Anything that helped.
The good hallucinations were much easier to deal with. Mum loved kids, and she’d see little children playing in the living room. She’d always want to make them sandwiches and glasses of milk, to keep their energy up. I polished off a lot of sandwiches. One day she decided that the ‘kids’ needed a bath. Of course they did. So I dutifully ran a bubble bath and carried out an impressively elaborate child-bathing mime, complete with shampoo, because it made her happy for a while. I’m glad we did, it’s a good memory. The more of those you make the better.
You have to fight
Before I was a carer, I did my best to avoid confrontation at all cost. When I became a carer, I found that you have to fight for everything. I lost count of the number of times we went to the doctor, desperately trying to work out what was wrong with mum and get a diagnosis.
It took months of phone calls and form filling to get her the benefits she was entitled to. I spent hours dealing with social workers, trying to arrange for professional carers to help out. Towards the end, we even had to fight for funding for mum to go to a care home, rather than stay in a hospital bed. Even the most easy-going people will put up a hell of a fight if their loved one’s life depends on it.
Caring = Stress
Caring for mum is by far the hardest thing I’ve ever done, and I only did it for four years. And I had help. I’m in awe of people who have to do it alone. There were times when I was so stressed out that it physically hurt. It took a long time to work out how to deal with it. It mainly involved putting a ‘Riverdance’ DVD on for mum to watch (she loved Irish dancing) and me locking myself in the bathroom for ten minutes for a self-imposed time out. I’d usually pace up and down. Or cry. Or scream into a towel. Or all of the above. Sometimes I’d want to punch the wall, but luckily I was too much of a wimp for that. The emotional pain was bad enough without breaking my hand as well.
Drinking through it doesn’t work
Trust me, I tried. Mum would get upset if she saw anybody drinking alcohol, so I used to drink red wine out of a mug and pretend it was a special type of juice so she wouldn’t freak out. I got through a lot of special juice. It helped temporarily, in that it briefly lessened the pain of gradually losing mum and helped me to chill out for a while, but I always regretted it the next day. Caring for someone while nursing a hangover is really not fun. I wouldn’t recommend it.
As I said, I’m not an expert. I’d just like people of my age who find themselves thrown into caring to know that they’re not alone. And that it’s ok to be annoyed about it.