Silvia: Marta, can you tell our readers about yourself and your family?
Marta: I’m 24 years old and I live in Genoa, Italy with my family. I’m studying at university and also working in a theatre group that organises activities for children and for intellectually disabled people. I have a sister, Francesca, who is also working on a degree at university. My dad is a really busy architect. My mum, Patrizia, is 53. Until a couple of years ago she worked in a medical laboratory.
Silvia: How old were you when your mother first started to need your assistance?
Marta: The MS started in 1990, when I was eight and my sister was five. I can remember at that time that my mum was admitted to the hospital for around a month. Currently, my mum has difficulty walking, but is really quite independent.
Help from my sister and I has become more frequent within the last three or four years, although I don’t think we really consider ourselves 'caregivers'. Perhaps I do have difficulty in identifying my role at home, as well as in my relationship with my mum.
Silvia: What kind of assistance or help do you give your mum? Do others in your family help as well?
Marta: I believe that my sister and I are indispensable at home. On a practical level, we take care of many of the household chores. For example, my mum does the grocery shopping by Internet but we get everything organised once it arrives. We run errands and do many other things that to us, seem quite normal for any child, even adult children. Sometimes we take our mum for her visits at the MS clinic too.
I realise, though, that what we can do for our mum that is maybe more important than any chore or errand, is to make time to listen to her.
This is especially the case since our dad can’t spend much time at home. Our attention and our time is really what she needs. Sometimes this isn’t easy for me though because I don’t always feel like dedicating time to her or sometimes I just don’t have the patience. I sometimes feel like I don’t have time to help her in the way she would like me to. Maybe it seems to our mum that having to help her is an inconvenience to us or that we’re doing it more out of a sense of obligation than anything else.
The most difficult aspect is somehow accepting that our mother has MS. I’m not sure each of us has reached this point and this certainly creates problems on an emotional level within our family and with others.
Silvia: Has it been difficult for you to make room in your life for studying, helping your mother and for a social life?
Marta: It may have something to do with the fact that we don’t really identify ourselves as caregivers, but I don’t feel like I’ve made significant sacrifices in order to be able to help my mum - I haven’t had to give up anything that I wanted to do.
Silvia: Did you have someone to confide in about MS and your own feelings when you were growing up?
Marta: I never had the kind of relationship with my dad that allowed me to share my feelings with him. Within our family we probably never really accepted MS, nor felt comfortable talking about it, which certainly resulted in a lot of anger not being expressed. Finally now, my sister and I have strengthened our relationship in a way that allows us to confide in one another - we never had this when we were growing up.
Silvia: In your experience, do you think that the fact that your mother has MS has influenced decisions you’ve made about your own life?
Marta: Yes. When I decided to move out of the family home I had a difficult time because I was worried about my mum. I also felt guilty knowing that my sister would have to manage any help Mum needed. Having the sole responsibility for helping our mum created some difficulties for my sister in organising her life outside of the family.
Silvia: Do you think that growing up with a parent with MS has significantly influenced your life?
Marta: Yes, definitely. I think I would be more serene and carefree if my mum didn’t have MS.
Sometimes I feel the weight of my responsibilities, but I’m also much more independent than my friends, as well as more aware of and in touch with my feelings. Mum’s MS has impacted our life as a family and the choices we have made. My sister and I are more mature than others our age because of this.
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