So I mentioned in the blog before about my hatred for my mum. Well as I got older I decided that regardless of how my upbringing was, I was going to be there for her. I had friends that visited with me, I found it hard to visit alone at first but I got there in the end. As she became more ill, she could do less for herself, she was put on the correct medication and it was only then that I begun to see a different side of my mum.
A side that always told her carers about her children, about me!! Until then, I always thought she hated me, until I heard tales of her speaking about me, I softened. How could I hold this disease against her!? Thats what Huntington’s does though, it changes someone so much that people turn against you, well not everyone, I see a lot of wonderful people devoted to their loved ones on support groups with warms my heart, gives me hope that I won’t end up like my mum if I have the right people around me. My mums friends, where were they when she became ill!? When the going got tough, they were no longer around.
All mum had was her family, not many, understandably after all my aunties passing away all their immediate family probably found it too hard, too many painful memories of what they had lost. I understood that, so mum had her children.
So I visited as often as I could with college and then a full-time job to contend with. Somewhere along this decline of health for little lady came my results. Thats when I saw things in a different light. I know I will cause a little controversy when I write this, but this is how I see things and how I felt, so I will continue to express this.
I realised the minute I got my results, that one day, it will be my turn. The first time I visited little lady after my results I sat there, watching her struggle to swallow her thickened fluid, eating her pureed diet, that I realised one day that will be me. I pictured myself in the chair she was in, someone feeding me, and that tore me apart.
The positive from this all was because I spent so much time with mum I saw a side of her that inspired me to fight this. Mum refused a peg feed, and as hard as it was for our family to deal with the fact she was wasting away I totally understood. I don’t think I would want my life prolonged when the time comes, if I am too ill to eat which if anyone knows me it is clear I love doing this, then I’ve lost part of my quality of life. I saw that my mum despite battling all her problems, she was so stubborn she would continue to try to fight, taking great pleasure in her Malibu and coke Id sneak in for her and her secret sandwiches when she was meant to be liquidised food only. Together we made a great team, I would bring in her favourite things and in return she would eat for me, give me a big smile, and we developed and amazing bond. When I used to make her laugh, my heart would fill because I knew that if one day this was me, and I was being treated like this by someone I love, my life would be okay. I took great pleasure in knowing I made mums life better, and by doing so my own life got better, I had inspiration and I had a mum, even if she could barely speak. It got to a stage where I learnt her gestures and frowns, and when she was saying yes or no, I had my own way of communicating. This made me realise that if I had the right people in my life, my own battle with Huntington’s would be okay. I would have a reason to live and until the time came I would make sure I made the most out of life, and educated those around me in preparation for when the time comes. I learnt from my mum’s mistakes that ignorance and lack of education is what makes life harder for those who suffer.
The negative was seeing despite the support I gave mum, but seeing the lack of support other people had. I know this will offend some people, and truth be told if you’re paranoid this is about you than your conscience knows you didn’t do enough, that’s not my problem, its yours and you have to deal with that!
I watched the few visits from people, and I couldn’t help but get angry not only for mum but also because one day that will be me, and if they wasn’t bothering with her then I felt one day they also wont bother for me. People found it too hard, but not once did people stop and ask me how I felt seeing mum, they had my anger thrown at them because I developed this attitude that if people didn’t bother with mum, don’t bother with me. It was hard because I felt with every hospital visit she had, I went down with her. I rode the highs with her, but I felt every low more than anyone could imagine, because that is the reality. One day, that skeletal lady fighting every step of her limited life, that will be me.
We became a little team did me and little lady, I became her voice and I was so proud to be her daughter, to have a mum who wasn’t going down without a fight! As her health worsened I realised I needed her closer, more available, I asked her if she wanted to move back to her hometown, where we all lived, and for the first time in ages words came out of her mouth.
When we got her back to Hastings, she was wide awake, eating and drinking, buzzing to be back home. It was in the home I worked in, but on a different unit so I did not directly deal with looking after her. I will never forget when she was settled in my at the time flatmate came over as I was on shift and told me to go see her because she was asking for me. My mum hadn’t spoken in well over a year, so I thought she was trying to be funny, until she said ‘no seriously, go see her, shes asking where’s my charlotte’. I still didn’t believe her, until I walked into her room and the nurse said ‘who’s that steph?’. Then came out of her mouth ‘thats my charlotte’. I cried, like a baby, and that’s the horrible yet beautiful thing about the illness, that it takes away a person, but when you stick by the person, you see little glimpses of their character burst out, its only then that you really appreciate life! I felt so proud, to have come from hating my mum to being so close she called me not only by my name, but said I was hers.
Unfortunately, after a few weeks, one phone call saying mum took a bad turn, which we had heard before, only this time she really had. Me and my brother sat down next to her, one either side, and she just looked half asleep, even then we didn’t realise what was about to come. I wiped her mouth because she was dribbling, which was nothing out of the ordinary, she made a funny little noise and my brothers face changed. I don’t know what he said other than she’s not breathing… the nurse had just walked into the room, checked her pulse and it was confirmed. In that moment, my entire world literally crumbled, I saw the harsh reality of the disease. My little happy bubble being there for mum burst, I coped with my diagnosis bouncing off of her, we bounced off each other, and now she had gone. It was like I suddenly came into the real world, I saw my mum, just passed, a fragile skeletal lady at only 5 stone, 57 years old, taken because her heart couldn’t beat anymore, heart failure is common amongst people with Huntington’s, I guess because they lose the ability to eat, or barely eat, it slowly kills their body from being too weak.
My brother was crying, the nurse kept saying I’m so sorry, and I just couldn’t keep it together, not only had I lost my world, I knew that this exact moment, somewhere down the line, would happen. I sat holding her hand, crying, then I felt suffocated, I should have been there for my brother but I had to get out of the room, a sudden thought came into my head and I needed to escape out of that room as far away as I could if only for a while. What was the thought? Its going to happen to me, and I’m going to be that fragile tiny person taken by this cruel disease. Any positivity I once had went right out of the window, just filled with one negative thought within. Huntington’s Disease was in me, and one day, it will take me.
The photos I have on here are of my darling mum, one just before the disease took hold, and one just a week before she passed. If my words aren’t enough to describe the damage it does a comparison might hit home for people.
I can’t end this blog without saying one thing, this lady was the reason I write this, the reason I share what I’ve been through and am going to go through. Not enough awareness was around when she became ill, when she passed I said my goodbyes, apologised for not telling her I had Huntington’s and I made a promise to her that I wasn’t going to make the same mistakes as her, I’m determined to try to reach people through this. If only a few, it’s a few more than before. I’m not doing this for myself, for people to feel sorry for me. I’m speaking up for this lady, even after she’s passed, I feel like theres a story to be told and people need to hear it, to be educated a little. Love you forever little lady ❤