Losing the physical self

After a couple of months being OK Anita seems to be at the low point of a new wave of depression. As mentioned previously it comes in waves, she starts to deteriorate gradually then bottoms out, then after a week/weeks she picks up again. She is much worse in the morning than she is later in the day. This is why she hasn’t posted to the blog for a while, I guess she feels it will be too negative so tends to talk about these things in emails to other people out there who are suffering a similar fate. She knows she is having problems coming to terms with what’s happened but it’s a chemical switch that makes things look even bleaker.

Her state of mind was demonstrated yesterday when Anita sat for 6 hours in the kitchen looking at the wall. I go out to work all day and she is left on her own apart from carers visits. Although the door was open and she loves her garden it seems she just stared into the house blankly. This week the doctor has started her on a new anti-depressant called venlafaxine and she has had a visit from a psychiatric nurse.

It’s horrific to see her so humbled like this, stunned into an almost comatose state, it’s so not Anita. Occasionally you get a little peep of the fighting Anita (she is the strongest person I have ever met), only other brain injured people and their families can imagine just how difficult it is. I know that like the sea, the depression will come and go out again, unfortunately there is no waking up from the bad dream that is the reality of the situation.

I wonder if the people that make the best carers are ones that are emotionally needy. Having someone making them feel like they are needed can be a tremendous boost to their lives. I don’t want to appear horrible because a good care giver is a phenomenal person and to give yourself up to help another is surely one of the best things you can do with your life. Unfortunately I am a selfish sod who sees freedom as one of the most important parts of my life (Anita also) and I don’t like being told what to do by anybody, even if it comes from external forces. I have purposely cultivated a lack of responsibility throughout my life only to be given some, like it or not.

I feel like I am becoming more and more de-sensitised to life that goes on around me. This is now what I call my robotic life, reacting less and feeling nothing. I think part of it comes from seeing Anita taken apart piece by piece in the hospital physically, and at home, mentally. I guess what I am felling is fairly natural. I must have buried my real self deeper and I am going through the motions of life in a much more detached way. Often that’s the best way, because the times that I feel are the hardest for me are usually performing domestic tasks. They are not that hard physically but it’s a mental thing. If you are weakened by this, or show signs of struggle, or become nasty to the one you are caring for, then you are making it miles more difficult for them and they don’t deserve that. I occasionally find myself getting very wound up and frustrated when carrying out the most basic of tasks. You feel most fed up when doing stuff that makes life a drudgery. You can easily find yourself becoming listless and it’s very easy to do absolutely nothing. You end up sitting in silence because you just can’t do the things you need to. It’s a new phenomenon for me because I have always been very driven and liked everything nice and tidy. Maybe I have realised it doesn’t matter that much anymore but at times it does, for example Anita keeping up her exercises.

The support you can get from support carers is essential. Any initial discomfort of having strangers in your life is soon outweighed by just how difficult it is when they don’t turn up. Let me pay homage to Anita’s carers. Yes there has been many occasions recently when they haven’t turned up, particularly for domestic help. It can be very difficult when this happens but without them at all life wouldn’t be worth living.

When you partner becomes disabled, to a large extent you can lose your mental and emotional prop in life. Physically you end up with everything to do yourself, and no matter how hard you try not to let it, at times this can make you angry. Every time you lose control like this it feels like you destroy a little bit of yourself and are failing in your life.

In the past I would always have been able to help Anita and she would help me. There was always a nice balancing act, when one was down the other was up. We always realised we are separate souls with our own mission to fulfill and we didn’t need each other to justify our existence. Now we have our own battles to fight and we have never felt as solitary as we do now. We have been cast in our roles of carer and cared for; these are not just ill fitting suits but perfect incarnations of what we hate most. Maybe it would have been easier if it was the other way around but that’s not the point, is it?

I feel my own difficulties are only a mere scratch compared to Anita’s but I can only express my own thoughts, I am sure there are lots of people with similar difficulties who will understand them. I remember back in the rehab hospital, it was pointed out to me with future support I would be able to have a relationship with Anita that wasn’t about being a carer. Let me make this absolutely clear, in these situations you are going to be a carer for life unless you leave someone. I guessed that then, and I certainly know it now. The yin yang of a relationship will undergo a seismic shift, no matter how much you love someone your relationship will change forever, you will be carer and cared for, whether you like it or not.

One of the nasty things that happens when you are forced to become a carer is that it can actually set you against the person you are caring for, the person you love most. If you want things to be easier for yourself it often seems you have to take from them. It feels like the most honorable thing to do would be to surrender your life and care for them completely because you love them so much. The most likely option is you come to an arrangement of give and take. It’s a horrible arrangement however if you have previously had a close and complementary relationship. The survival instinct divides you into your two separate roles, causing potential alienation.