Firstly i wanted to say hello to anyone who reads this and thank you for reading.
I dont really no where to begin, ive wrote paragraphs of words only to delete them and start again. My mum has had MS for 25 years aslong as i have been alive, my younger years were full of happy times and my mum was able to do anything a normal person can do but as i got older and the relapses got far and fewer between, we spent alot more time in and out of hospitals. She was given courses of steroids and then she would perk up and things would go normal again for a while. i wish things were still like that now. My mum is now in the advanced stages of MS, the last 2 years she has been on a peg feed as more and more problems with swallowing were occurring, eventually leading to aspiration pneumonia and rapid weight loss through choking on food. My step dad has cared for my mum at home for aslong as i can remember. The strain it puts on your family i would never wish on anyone. ive watched my whole family fall apart and become distant unable to talk about our problems, emotionally broken!!!
6 months ago she developed a chest infection witch although caught quick led to Aspiration pneumonia.The doctors told us most people who come in to them in that condition dont usually come back out and to prepare for the worst, but as always she battled through it and got better, coming home after only a week in hospital. unfortuantly the last 6 months have been were the real battle lies. Her health has deteriorated she seems to get alot of bacterial infections and genrally looking run down and sleeping most days she can no longer speak other than a faint yes or no and she has no use of limbs, I feel asif im babbling on here with no real point to what am writing. Ive spent the last 3 months waiting for a refferal to the neurology department in a hope botox injections would help the spasms that effect every limb on her body. Unfortuanlty the news we got was not good I feel like weve been palmed off by everyone we see, the neurology department decided the Spasms are untreatable with botox injections and to up the baclofen tablets to 12 a day, although 10 a day make no difference atall to spasms!
The proffesor spoke to my dad about end of life care and that if my mum was to get pneumonia again and an organ failed they would not do CPR on her because of the risks. This news has devastated me. I feel so lost and upset everytime i look at my mum smiling back at me like she always does, i feel like crying. Im suffering with depression and anxiety and the effect this has had on my personal life has all caught up to me. Having these conversations at 25 about your mums death is to much for me to take. On the 1 hand shes so strong and fights and fights with a smile on her face witch gives me hope and on the other hand these overwhelming feelings of fear of whats going happen in the future haunt me. I have a little girl on the way and i want my mum to enjoy every moment she can with her while she has some grasp on whats going on around her,
has anyone been in the same situation as me??? talking to friends doesnt seem to help they dont understand the things me and my dad deal with day to day. IVe never felt so down in all my life the weight has been falling off me in the last few weeks feel so on my own with this