Hi, Hey, Hello! Today entry is a serious one. I have been writing, rewriting, fighting and putting off this entry. It’s something that is very personal and incredibly close to my heart. This entry is giving an overview of my personal experience in being a full time carer for my terminally I’ll mother from March 2011 to July 2013. In the few weeks before her anniversary on July 1st I thought it was appropriate to share this. I’ve always wanted to write down how I felt at this time, how I dealt (or didn’t deal) with everything and how it shaped me into who I am. This is my own experience and I do not wish to upset family or friends who may read this so if you’d rather not hear nitty gritty details or relive what was indescribably terrible time for our whole family then please stop reading now. *I cannot speak for anyone else. I am speaking for myself and my experience. That may be different from other people’s eyes but this is mine*
So, my mother. Tracy without the E. She was short, had curly mousey brown/blonde hair, on one hand she had the tip of her middle finger missing from an accident she had with one of her 8 siblings! She had an odd love of burnt toast, Diet Coke and chocolate, anything sweet really. Tiramisu was her ultimate but she made the best brownies you’ll ever eat. Her favourite animals were elephants and cats, she loved reading and listening (and singing) to music. She’d watch any genre of movie but science fiction, period dramas, horror and action were her favourites. She had a contagious laugh that we all likened to the cluck of a chicken. She was a woman of many words, many laughs, many tears and many struggles. She was the mother of 4 girls. She was the wife of 2 men in her lifetime, both marriages came to an end. She was always there for us, she was always there to help if you needed it, if you were stuck or scared or upset she was the one you could undoubtedly go to.
In 2010 she started getting symptoms of disease called Motor Neurone Disease, commonly know as MND, ALS, “the disease Stephen Hawking has” or Lou Gehrig’s disease. She would lose her balance, fall over, lose feeling in her legs, laugh or cry uncontrollably and have swelling in her legs to name a few symptoms. She went through a lot of tests through our general hospital which if you’re a public patient yourself you know all too well how long it takes for things to get done. My Grandad who, rest in peace, was quite a believer in fairness and not “putting up with anyone’s bullshit” was a real help when it came to getting tests and results. The day we found out was a blur. I didn’t go with my mum or my sister to the hospital because I didn’t understand what was happening really. They both came home and were very upset. I didn’t really understand even after they explained it. How could my mum be sick? She’s my mum. You never expect your mum to get sick, and not just sick but terminally ill.
(Mum with an ALS Fighter shirt! She sure did fight)
In 2010 I was a senior in high school, I was 17. I was bullied and only had a few close friends. I passed all my subjects except Maths which was never my strong suit. I remember wanting to drop out 2 weeks before graduating but mum said “you’ve come this far, you can do this!” Sometimes I felt like she was my biggest cheerleader. I graduated in November of 2010 and was an active job seeker until March 2011 when I then became my mum’s full time carer. At the time mum didn’t want a stranger, a nurse or to go into a nursing home. My 3 older sisters had lives, 2 had children and they were in no position to offer to do it. I stepped up and did it. I didn’t think twice. She looked after me for my whole life and now it was my turn to look after her. We had to move from our home to a new, disability friendly house. The new house had wide door frames, low benches, rails in the bathroom. It was a small place, only 2 bedrooms. That’s all we needed – just us two.
At first mum had a walking stick. She could still walk around the house, she would need help getting out of her arm chair (until she got an electric one) and help getting in and out of bed. Her MND started in her legs so over time she went to a walker, shuffling around. She fell a lot more with the walker, by no ones fault but because her legs just wouldn’t do what she wanted and she was a little (a lot) stubborn. Mostly we went to doctors appointments, saw family occasionally, watched A LOT of movies and Foxtel. Then she needed a wheelchair. Just a normal push one, she could kind of manoeuvre it herself. I helped her in and out. Tried to keep on top of the house work, gave her her medication morning, noon & night. Made appointments, cancelled appointments, made our breakfast lunch and dinners. It was a gradual decline in health. They always said it would be a dip and then stop for a while, then dip again. I started showering her and helping her use the toilet short after she started using the wheelchair. Privacy wasn’t even a concept anymore. She hated that.
I had experienced anxiety from a young age and depression in my teen years so the symptoms weren’t new to me.
I was always fine.
Everything is fine. Today? It was fine thank you. Mum is fine. I am fine.
I used to get up by mum calling my mobile phone in the morning. Then we’d get up, use the bathroom, have breakfast and watch tv together. I used to sleep a lot during the day. If I wasn’t helping her I would sleep. Depression really knocks it out of ya! I never really thought I was depressed while looking after her. I never felt like my behaviour was anything bad or wrong or unusual. Until I started self harming and drinking alcohol regularly. I used to hurt myself out of guilt and frustration. If I forgot to give her medicine at a certain time, if I missed her call to wake up, if she felt sick, if she was sad. My cousin and I would get drunk a couple of times a week for fun but I would get absolutely plastered and then get a few hours sleep, throw up, be hungover and get up at 8am and do it all over. Bathroom, breakfast, medicine, tv etc. I knew there was something wrong then but I didn’t have time for it. I didn’t even have time to scratch my own head. I was either completely occupied with mum or I was sleeping/distracting myself from my reality.
My reality of: My mum, my best friend, my everything is dying. I am looking after her and it will end eventually. Not because she’s getting better but because she will die.
For a long time she was the only person I could count on. I used to think once she died I would be all alone. I felt very isolated and alone during these few years. There was a bit of conflict between my family members during these few years. It was hard for everyone. Lots of tears, messages, emails and even more tears. It’s hard to forget those times, but I refuse to hold onto negativity. It’s pointless and not how I want to live my life. It’s in the past now.
Not everything was bad though. We used to laugh a lot, every day at least once we would make each other crack up. We laughed mostly at our cats, they’re such characters. We watched a lot of scary movies together and not good ones! We loved horrible B Grade scary movies. My cousins, mum and I would have scary movies nights with snacks and so much laughter. I cherish those memories. I cherish the good times. We used to play video games and mum would coach us through the tricky levels whilst reading her book pretending not to be interested. One cousin would bring over a episodes of her favourite show so her & mum could watch them together, I used to “rest my eyes” during the show because I couldn’t stand it. I’m grateful for those little breaks. To my Nana who would come over with my Grandad to help me with housework and cooking. To all the stories her and mum would tell from when she was a young girl.
I remember having a huge anxiety attack when I had to learn to use her hoist because at that stage she needed an electric wheelchair. She couldn’t use her legs anymore and her arms weren’t very strong anymore. She had to get a port put in her tummy to feed her because she couldn’t chew or swallow food very well. Her favourite food towards the end was chocolate custard. She used to eat that more than anything and drink Diet Coke a lot. “I’m dying so I’ll eat what I want” who can argue with that?
I’m not saying I am a saint and that I did the most perfect job. I’m not saying I’m the only one who was effected either. You could ask 20 different people and they’ll have 20 different views/opinions. I did the best I could as a teenager with what was put in front of me. Everyday was hard but everyday I did all I could for my mum.
I am beyond grateful I got to spend so much time with her. Even if she was sick and I wasn’t always mentally present. I am grateful for the bond we created. We were close before this but it brought us a lot closer. But 19 years wasn’t enough time to be with her. 19 years wasn’t enough time to get to know her. 19 years is, selfishly, all I got.
I remember the day she passed away. It was early morning, she was in the hospital already because she had some breathing problems/pneumonia. I got a call from my sister saying that she wasn’t doing well and that we should go to see her. We got there and she has her eyes closed, she was breathing and making a deafening noise. Like each breath was harder than the last. They were keeping her comfortable but there wasn’t anything else they could do for her. It was hard to believe that this was it. How was this it. Family members were in the room and we were all crying. I held onto her arm and tears just fell without any effort. Then the breaths didn’t come anymore, there was silence. She passed. We all said a little goodbye. She looked like she was sleeping peacefully. Finally, peace.
I feel sad about the last time I saw her alive. Two or three days before she passed away she was talking and alert, we were talking about the movies we had to see when she came home. I remember saying goodbye that night, it was a quick “see you tomorrow love you mum”. We left. I wish I had stayed. I wish I had been there with her for longer. I wish I had noticed she was sick sooner. I carry guilt around with me for not noticing sooner. I know there was nothing I could’ve done better or sooner or anything. I know she was already sick and this was a common complication of the disease. I know that. It doesn’t make it easier.
Almost 4 years later and I don’t think about that time often. I get too upset and angry and sad and disappointed. I think of all the things she will miss, my wedding, my children – my life. She will miss all my important moments and my insignificant ones. She didn’t meet my first love and she won’t meet my last. She couldn’t comfort my first heartbreak. She can’t hug me when I’m sad, when I’m happy, when I’m sick. She isn’t a phone call away. She isn’t just down the road. I miss her with every fibre of my being. It’s hard without her guidance. It’s been so tough without her. I never knew I’d be so lost. I am envious of people who got more time with her. More lessons and advice and laughs and moments. Sometimes I forget what her voice sounds like and her smell. My sisters are good at telling me stories about her, so are my aunts and uncles and my Nana. I am even crying while writing this because I hope she’s looking down and is proud of me. Proud of how far I’ve come, who I’ve become and what I’m doing. I hope she’s ok with me sharing this story. I hope she’s not sick anymore and she’s surrounded by our other passed relatives. I hope she’s so happy she has sore cheeks from smiling so much. Mostly I hope she’s close, that whenever she may be it’s not far from me.
Do I have regrets? No. Would I go back and say no to it? No. Would I change a few things? Yes. But we can’t all see the future can we.
If you have questions feel free to ask. I am an open book and don’t mind answering anything. If you are concerned or hurt or upset by what I’ve written, I’m sorry.
If you read this, thank you. Thank you so much for allowing me to express myself and let this out. I feel lighter and more free just writing this.
If you or someone in your family suffer or have suffered from MND please know my heart is with you. It is cruel and unforgiving. I am with you. I am here for you.
Thank you for allowing me to share this.
Until next time. Talk soon x