We Are At The Pointy End

My mum has MS, she was diagnosed before I was born – over 30 years ago. I just grew up with it and not knowing any different. It was just always there. When I was little she was so determined to be positive and beat it. She went onto a completely alternative diet and lifestyle. Things were happy and healthy and we never thought it was going to come and get us. As I got older things started to deteriorate. I remember coming home one day from primary school all chipper from the day and there's mum in tears in bed. When I pressed her about what was wrong all she could say was "it came back". I just gave her a hug –what else can you say! Everything became a struggle eventually. Then it became a worse struggle. Slowly over the years, she lost her abilities one by one. She worked as a nurse when I was a kid. , but then she couldn't keep it up. Its been like torture at times. When I was 14 she got a walking stick which was a huge relief because I'd been supporting her weight wherever we walked for what felt like years and years. Then after a few more years she needed to use a walking frame. Now its a wheel chair. She has pretty much lost it all now except some very minor use of her hands. She is 68 years old and has a completely sound mind. Her and my dad live in their home still but things aren't going well because dad's health is failing too and now I'm caring for them both.
Sometimes my mum gets upset because she is so frustrated with being cared for all the time. I wonder how it could be so hard when you have a whole team of people who's lives revolve around you. I just want to find time to watch the news once a week. She’s worried about when I’m going to do her nails, and get more cups of tea. I cook their meals and sometimes I need to be there every day to put them in bed - it takes an hour - or get them out of bed. That takes an hour too.
Mum and dad won't move out of their own home. Even though I think they could have such a full and stress-free life in a retirement village or similar. They are determined to stay together but refuse to make any arrangements to do that. I am really feeling the stress now every day just so worried about them. While I’m at work, I just don’t know what is going wrong over at their place. Most days there is some problem. A few days ago, the electric hoist broke down and she had to stay in bed for two days. That’s the only way we could move her to change her enormous nappies. Mum doesn’t have to live her life in enormous nappies, but she refuses to do anything else and so here we are. Also, the nursing service that looks after her is happier to supply massive pads and nappies than they are about having a catheter to look after, so that’s what we all have to live with. I am so OVER the smell of urine.
Lately I have started to feel sad about what my life might have been like if mum was able bodied. How she could have been more interested and supportive in my life. Now all she has is her opinion, and I think because that’s all she has, she doesn’t care if its hurtful. A times I cry and I have mourned the loss of having a mother who can be more involved in your life. It’s a different kind of relationship when its you going over and just physically caring all the time, while she sits there and gives orders. I know I must sound so like all I can do is complain, but I guess for once I wanted this to be about me and not just about her.
sherbert88 sherbert88
2 Responses Jan 14, 2013

Hi, im all new to this and I found your experience. Its so close to my homelife is at the moment and me and may dad are struggling at how to deal with it all as it is all of a sudden. We are still getting to cribs about ms as we have never been explained what it means as mum was diagnosed before she met dad and had me which is over 24 years ago.

I have never read a post so close to how I'm feeling. My father was diagnosed a few months after I was born. Him and my mom already weren't really together, so I hardly got to see him. As his MS got worse, I would always think, "Why can't I have a normal dad that can take me places and go to father/daughter dances with me?" It would really get me down, but I know he tried. Recently his MS has become pretty bad. He can't remember going to my graduation two years ago, he thought I was turning 2 years younger than I am. He also just recently moved in with my aunt and keeps asking her how long he is staying there, no matter how many times we tell him he is living with her now. He yelled at her because his walker wouldn't fit through the bathroom door and has lost almost all control of his bowels. I feel bad that my aunt has to sacrifice so much time to care for him, which sounds bad. I think we just have to stay positive and remember the good things they have offered us in life and remember that they are our parents and if it were reversed (hopefully) they would do the same for us.