HI everybody, long time no speak...
It's a long one so you have been warned..............
So my mum has had MS nearly 22 years, she was diagnosed a year before falling pregnant with me.
My mum is now totally bedridden and is unable to do anything for herself, she also has what I can only think of as "trapped" syndrome, in the sense she is unable to communicate fully, often losing track or interest in conversation and finds it difficult to construct a long sentence however she is totally aware of what is being said to her, I just feel she's able to talk normally in her head but because of the severity of her MS she finds it hard to converse normally..
I will be 21 in a few weeks and I have been her carer all my life. From as young as 3 I was able to get my own breakfast and help with menial tasks around the house, at the age of 5 when my little brother was born I also took on a large roll in caring for him. Mum has not always suffered greatly with MS but through the years her MS relapsed quite a bit and as a result she has suffered greatly, the MS has contributed to my mum having a stroke, kidney stones (mainly due to medication) and to various infections; mainly chest and kidney/urinary infections.
I believe the chest infections are due to her bedridden state, because she is unable to move/exercise I feel that her diaphragm isn't as strong as it should be, this results with her being unable to cough and dislodge phlegm from her lungs, which in turn causes chest infections. We (my family and I) have learnt to spot when mum may be getting an infection and now are able to get antibiotics to treat it before it becomes another potential hospital stay, where she would surely die of starvation if it were not for us visiting every day to feed her.
The kidney infections were mainly caused by her calcium tablets solidifying within her kidneys, around 3 years ago we nearly lost her as a stone become lodged within a tube, septicemia set in and she was rushed to hospital, she was in a coma for 2 weeks and during that time were told she could die at any time, it was a very distressing time for all of us...I suffered a nervous break down and believe withing that time the onset of my personality disorder became clear. It took another 5 weeks to rehabilitate mum to a point of stability, but since then her MS has taken it's tole leaving her very weak and unable to feed herself or control where she looks.
My mum is my only parent and I long for the days that I could have a conversation with her, she was my best friend... my only friend, and I feel as if I have lost her. All I have is memories and many of them are various times visiting her in hospital, or seeing her leave... don't get me wrong, there are good memories too, but it saddens me to think that that is all they are now.
So my question is this;
How many of you are effected by these issues?
How do you cope with dealing with someone with such sever MS? Especially when it as close as a parent/child?
Thanks for hearing my rant, I just feel there is little info for those who care for someone with such advanced MS, or people that may have also developed some sort of mental disorder because of such a traumatic past...
Hope to hear from someone too,