I cannot cook or use the bathroom independently and need assistance transferring from my wheelchair to the car/bed/bathroom.
My husband and children have been helping me for the past six years to do these tasks.
Whatever about my husband, surely this is a form of child abuse for my children, Angela and Joseph, who have the arduous task of transferring me to the toilet and stripping me before transferring me back to the bed and helping me dress. Then they must sit me up and put me back in the wheelchair again.
Needless to say, I'm no Barbie doll. Surely that's a lot of responsibility for children so young.
Just writing this out and looking at their workload, I'm amazed they have time or energy for school, music and play.
My home help left on Nov 13 last and a replacement was not found until Jan 9. Needless to say, our household still paid tax during this time, though the state services were not fulfilling their responsibility yet all those working in them were still bringing home a wage.
During Christmas week a nurse from the health centre came to put me on the toilet and give my children and husband a well deserved break for about 30 minutes. This service was available up to Feb 3. My home help does the tidying, cooking and shopping. This service is available to me for 90 minutes a day. Surely my family should not have to carry this burden by themselves.
I've received a grant to make the bathroom more accessible, but I would gladly return everything I received if only I could be made well again.
My children had to do the extra Christmas shopping, purchase gifts and cook as well as do their Christmas exams and perform at their piano, flute and violin concerts. The frustration in this house coming up to Christmas was unreal. It wasn't helped by the attitude of some health bureaucrats who seem to think that I'm responsible for the situation I find myself in, while my family must get used to it. My family are not responsible for me round the clock. First I am a mother and wife, who happens to have MS. I feel demeaned, humiliated and stripped of my dignity for asking for help but none is forthcoming.
Dealing with the health services was so like ' Angela's Ashes' when they had to beg from the V de P. It seems there is no compassion at all. Who compensates me and my family for the extra burden we had to endure from Nov 13 to Jan 9? The system is biased in favour of those in society who are wealthy and healthy.
The inefficient tiered system only seems to work for those within the system, and not for the people availing of the services.
During this time my son became fearful of the future and what was to become of his mother.
"Mom, what's going to happen when dad is too old and we are adults trying to get on with our own lives?" I don't know but I do know that a child shouldn't have to worry about such things.
My daughter, who has helped me in so many personal ways, has vowed she will never have children. I do not think it is acceptable that they are in the situation of 'compulsory altruism' and I am put in a position of being a parasite in need of a host.
In December my public health nurse filled out a form for the attention of Centre of Independent Living (CIL), applying for extra help.
This form also had to be signed by a supervisor in Abbey Court House before it could be processed.
On Thursday, Feb 6, I enquired at the CIL. To my horror I was told that they had not received the application form but believed it was en route. It's appalling that a letter should take so long to be signed. As a constituent of yours, Minister, I trust that you will be more professional when dealing with these issues.