I’ll start this post tonight, but it is unlikely I will finish. It’s 23.16 and I really should be in bed, but as usual I am not. I’m tried, emotional exhaustion as opposed to physical exhaustion, although it’s there too.
I’m listening, and I can’t hear anything and it’s a blessing, it means all is peaceful, something that in this household has been severely lacking of late. There is no shouting, crying, cursing or stamping of feet. The Mothership is in respite and I can breathe.
A few weeks back a routine glucose check promoted an urgent trip to the hospital, where it was discovered that she has iron deficiency anaemia. They don’t know the reason and because of her level of understanding are not sure they can complete the necessary examinations. 9 hours we waited while she was topped up with both blood and iron. We hoped that perhaps that had been the reason for the decline in mood, but we were wrong and things steadily got worse.
The Fathership contacted her social worker and when she eventually returned his call a visit was arranged. They discussed carers, incontinence clinics, day care centres and medications. There was no discussion about what you do when you feel you’re at the end of your rope and have no strength left to tie a knot and hang on.
We persevered for another couple of weeks, but there was no improvement and neither of us could remember the last time there had actually been a good day. Her new favourite word became no, which she said a lot when we were trying to get her to eat and drink, a vital part of staying alive.
I’ve cried so much this last 2 – 3 months, because there really is nothing else to do when you feel there is no where else to turn. You look at the person before you and in your head you check off all the tactics that you have tried to stop the shouting and crying, and when you realise that you’ve actually reached the end of your list you think how, how the fuck am I going to deal with this person.
In sheer desperation the Fathership contacted her Doctor and outlined everything that had been going on, the lack of eating and drinking and the increase in the aggression and she took the decision to have her placed into respite for a couple of weeks in order that she could be assessed to see if perhaps there were any other underlying reasons for the decline.
I cannot explain the weight that has been lifted off our shoulders even if it is for a short time. How delighted I was to be able to sit down and watch the TV or sleep all through the night, something that I had not been able to do in the last 2 months.
It’s not been the stress free week that I hoped however, one set of worries just becomes replaced by new ones, like how is she getting on, will she kick off with the staff, will she fret for home and also, will she hate us for placing her in there in the first place. There are still things to be done, certainly a lot around the house and lets face it the cooking and cleaning never stops. I badly need to catch up on sleep, because the world is a scary place when you are suffering from a lack of it.
She’s been in for almost a week and I have not yet been to see her. I’m not sure people understand my reasoning, but in order for me to make the most of this time I have been given I need to try and distance myself, because if I go to visit and she is either upset or accusatory then it is going to take away any of the benefit that this period of peace should have.
Others have reported that she is doing well. albeit she will not eat and drink more than the minimum for the nurses either. She seems to like the company and to be honest that was a fear of mine for the last few weeks, that she was lacking the interaction with people other than myself and the Fathership.
We have big decisions to make, but I think we all know that the time is coming when we will have to choose where the best place for her to be is. We can’t seem to make her happy any more and if she needs that connection with others then perhaps she needs to be where that can be provided.
I’m trying to take one day at a time, but already thoughts of her return home are crowding my head, because when you have had that little bit of freedom and realise what life can be like, you realise it’s going to be very hard to return to how things were.
One day at a time eejit, one day at a time. Keep breathing.
(As predicted, this post took me 4 days to complete)