This post is going to be a bit different. I’m not going to share the link on Facebook as I usually do, but I will on Twitter.
Because it’s going to be about “caring”, and the difficulties of sustaining that role. Twitter’s hashtags may attract the attention of people in the same boat. (The people who get my posts by email will get this, I haven’t got a problem with anyone reading it and I’m not bothered by friends knowing who I’m talking about but anonymity is better which is why I’ve used no names)
Because in the last 24 hours I have been told to “F@@@ o##” numerous times.
This happens regularly, and I absorb it, let it flow over me, snap back etc. etc. But, every so often, I’ve had enough!
This post is not intended to be sad or attention seeking but I hope that it is informative and raises awareness.
My partner is disabled. So what does that mean?
He is insulin dependent diabetic. He needs 2 injections a day which he can do but not prepare. He takes many other prescription medicines which he needs to be prepared for him.
At the age of 38 he had a brain haemorrhage which has left him with right sided paralysis, understanding and communication difficulties.
He has pancreatitis, osteoporosis, acid reflux problems, hiatus hernia, is alcoholic (no longer drinking) has problems with his bowels and bladder and probably other things that I cannot remember.
As you can see, he’s really gone through it. In fact, I’m not quite sure how he’s reached 64!
So what are the main problems? He is bored, he is lonely and he complains he has no friends.
He refuses to go out. The only times he leaves the house is if he has to attend a medical appointment or if there are workmen in the house that he wants to avoid.
He refuses to accept help from anyone other than me so, even when they were looking at getting help with washing him he refused.
He watches the same TV programs over and over again. Mainly about trains or terrible 1970s comedies. He will watch the same episode 3 or 4 times a day. He will watch football matches, but what he mainly does is sit with the remote control and scroll through the channels spending about 10 seconds on each one.
He is obsessive about where things are kept and how things are done.
When he had his stroke our friends haemorrhaged as well. This is not uncommon. Unfortunately he was so unwelcoming to the few that remained and visited that, understandably, they disappeared too.
So, he does not see anybody, do anything, cannot converse and has nothing to talk about.
His speech is deteriorating. I do not know if this is because he does not use it or if the brain damage is getting worse. When he cannot make himself understood he becomes angry and says the words he never has a problem with!
His mobility, always bad outside the home, is now a big problem indoors too. He uses his quad stick most of the time.
But his biggest problem is his attitude.
Apart from our wonderful next door neighbours (thanks you two) I am the only person he sees, speaks to and, in his mind, can control.
He makes demands for food and drinks, he insists on complete control of the TV. He refuses to go out anywhere.
He gets very angry when I do not understand, or immediately do, what he wants. He then becomes verbally aggressive.
I do not know the answers.
I look after his physical needs. I encourage him to do things but I refuse to let him pull me under.
I am indoors a lot of the time, but not all of the time.
I’ve put a lot of effort into creating a life for myself. He is a very large part of it but he is not all of it.
So if you see me going out, or if you see me NOT going out please do not judge me.
If you hear me refusing to get him a coffee etc don’t feel sorry for him. I’d willingly do it, but not if he’s been telling me to “F*** off”. Then he can do it for himself!
If you are somebody who has a carer(s) and can recognise any of this sort of behaviour in yourself, please think about it!
If you can think of any constructive ideas that could be used with a huge man who has toddler tantrums please let me know.
But, more than any of that, if you know someone who’s a carer tell them a joke!
I’ve got my life pretty sorted, if you look at my other posts you’ll see that. But there are a lot of other people out there who may not have. Just try and give them a smile.
By the way, when I came home the house was in darkness and he was in bed. I did not appear to check on him (although I knew he was ok). I sat and wrote this.
He has now appeared and, whilst not apologising, is trying to make conversation and has not, as yet, used his favourite expression. He has even said I can pick something to watch tonight.
I’m not holding my breath 🙂