It is recommended and advised by professionals and the social services that the partner of a person who is disabled “not to be his/her assistant”. Because this is not good for a relationship in any way.
I always have to have at least two full-time assistants. The ideal situation is to have two full-time assistants and one part-time assistant. That is to cover all the hours in the week. It has to be this way because I cannot do anything by myself, nothing at all.
The person who I am living with has to take care of me (when I was at parents’ home it was mom, but when I am living with someone my partner has to do it) for the rest of the day when the assistants are not at work.
The work, taking care of a person that is paralyzed, is quite simple. Yet it requires a certain kind of mind-set and that is what makes it somehow difficult. That goes also for the person living with someone who is locked-in. This person has to have a very strong mind-set. And not just that, they have to be able to handle emotions that at certain moments can rise to a very high level. Just imagine the strains of dealing with a person who is locked-in. Then imagine a having to deal with a woman with all her moods. Now add them together. Exactly, an explosion that creates a completely new solar system.
It isn’t easy at all and you cannot judge a person for not being able to deal with it.
The first months in Aruba were great. Just like any other romance, the beginning is wonderful, everything is new and exciting. As we all know, eventually real life will kicks in and with its reality will test our strengths and our weaknesses. And it will reveal our true colours.
Before anything T. my partner in Aruba is not a trained assistant although he has capabilities to face many kind of disabilities. He has given judo- lessons to disturbed children and taken care of elderly. Nothing humanly is strange or uncomfortable to him. (I had boyfriends before when paralyzed, but I did not live with them and I am sure that none of them were ready to take that kind of responsibility what Toni had to take).
Going to work and dealing with disabled people is one thing, living with one is another thing. I guess that at certain moment it started to become too much for him. He could not handle the situation and all his less better traits started to show. The stress level was so high that just one wrong word caused a horrifying verbal abuse. A good day would be one which he was not yelling all day long.
Things got worse with every passing day. And it took an all different level when one of the assistants announced that she was quitting. This would mean that T. that by then was just taking care of me sometimes would have to start taking care of me ALL THE TIME.
Can you imagine how I felt after this announcement, when I pretty much always heard how he has to be with me, how he has to drag my ass around, how I ruined his easy life, how fucking stupid I am, fat, don’t understand anything, I’m a liar, etc. That all when he was spending just part of the time with me.
So total confusion in my head. I didn’t know should I stay and fight for us or give up and move back to Finland. I had been considering that for many months already. I always just put it off thinking, hoping that things will change for better.
At the end, I took the decision and I moved back. It felt like a huge weight had been lifted off my shoulders. From paradise to ice-cold Scandinavia. It sounds like a sad ending to a love story I know. I felt the same way back then. But guess what, that was not the ending. In fact it was just a path which would lead me to real paradise.
LOOK AT ME NOW!!!
When Kati is in Finland my time goes completely with her. Probably it´s my luck so I don’t have time to worry about anything. When I´m alone fears and worries sneak inside my head .If I lived all alone I might become bitter Marjatta Lepistö (Kati’s mother) admits.