Changes

I last posted to say we were waiting on a decision for funding my mum’s rehab place. The funding was approved and she moved in 18th June. She has been there for nearly 3 weeks and I am going to a review meeting at 4 weeks to discuss whether she can come home after the 6 weeks or extending it possibly up to 12 weeks or alternatively whether she can no longer live ‘safely’ (for want of a better word) at home so if she needs to move into a nursing home closer to home on a long term basis.

The first 3/4 days were a nightmarish, she reacted in such a terrible way to the changes. What I mean by this is: being told to not spend her whole time in bed and thus preventing her from doing this, eating properly etc. I haven’t gone into detail about how hard she had been to manage at home in 3/4 weeks before she went for rehab. She was making herself sick, refusing to eat and became dehydrated which lead to a short hospital stay during May to correct the dehydration. Her behaviour at home was quite difficult to challenge, I usually nip her tantrums in the bud and give in but at rehab they haven’t done that hence why she reacted badly to it. She was throwing herself on the floor and kept banging her head on the wall deliberately as well as screaming a lot. As well as refusing to eat resulting in numerous hypos. The staff said she was probably just reacting to the change in environment and hopefully it was just a stage. Strangely, on the 4th day she was acting normally again and the tantrums had diminished. She has been doing reasonably well in that she is getting up, washed, dressed and mobilising but could be doing a lot more. She is mobilising with the frame but only when prompted and would still prefer to stay in bed! Her diabetes is actually a lot better reducing her Novorapid insulin from 12/16/18 units a day to 6/6/6 units a day and reducing her Levemir insulin from 34 units down to 6 units. She is eating more regular meals and mobilising more which means she needs less insulin, they think they might be able to get her off the Novorapid which would be brilliant. Initially 6 weeks felt like a long time but I’m uneasy that it may not be long enough, I’m not sure she will be in a position to go home in 3/4 weeks time.

Before my mum went over for rehab, I was feeling really stressed and stuck in the situation. During this time I decided I definitely did want to go to university as I didn’t want to end up stuck. I haven’t made concrete decisions but I will soon. I want to do something normal, something someone the same age as me would be doing. It isn’t really a life to spend your whole time as a carer and it doesn’t help my mum to reinforce the view in a sense that she needs such care, I want her to regain as much independence as possible. The first thing the people at the nursing home (where she’s having the rehab) said to me was: “How on earth did you cope?” And I don’t know really other than I suppose the motivation that she’d be going to rehab. They said she can do far more for herself than she realises but needs encouraging in a supportive but firm environment and that basically, I do too much for her. I have found she sometimes ‘plays up’ when I visit and I sometimes without thinking, go to assist her with standing up for example, then realising she can do this for herself.

I am considering going back to college to volunteer for a few months/full academic year as a student mentor for the students doing A-Levels as the careers advisor thought I’d be good at this. Not sure if I would but it would be nice to do something different. I’ve been considering my time at college and I think it has actually been the only educational establishment bar nursery where I was continually supported, encouraged and faced no adversity. My experiences in primary and secondary schooling were mixed to negative, I told someone the above at college and said I had come to college expecting to be bullied and thrown in at the deep end (and they were horrified). It is nice to be able to say such positive things about something even though I did have a tough time personally both with my mum and with health issues that interfered at times. I am concerned about going to university but I’m hoping that if I need similar support there that I will be able to access it.

This week somebody said to me that they thought I had a lot of tenacity, for some reason I view this as a negative comment even though I don’t think it was meant negatively. The comment was referring to my education, mum and health. The way they said it was as if they were fatigued in saying it. It makes me think I try too hard and that it shouldn’t be so hard if it worth doing. I know reading some of my comments in this post this is a contradictory statement but our thoughts aren’t all in the same direction, particularly mine! I don’t think the determination I had/have is a real thing but something that I view more out of necessity. Determination I feel, is the drive to do something because you want to do it not because you are forced to do it. Giving up for real doesn’t feel like an option. Giving up feels like a luxury – however twisted that sounds.

And so re-reading what I’ve written so far kind of sums up my thinking patterns: thinks rationally-gains confidence in decision- then down like a lead balloon doubting it all. Maybe some things never change!

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