Taking back control

I'm going to start this post once again with the words 'when dementia enters your life everything changes'.  You may be tired of hearing what's becoming a well worn phrase in this blog but it's so true and nothing can prepare you for what's to come.  Apart from the brief period when Jake was little I have always worked; at one time I had three jobs and, if I woke in a morning and couldn't remember what day it was, I panicked because if I didn't know what day it was how would I know where I was supposed to be.  Those jobs weren't fancy, in fact they had nothing in common with each other whatsoever which sometimes added to my confusion.  In one I mucked out the stables of shire horses, on another day I went to serve tea and cakes at a local farm park and on the remaining days I helped to keep some sort of order at our village playgroup so there was definitely variety in my life but no thought of a career.  Then one of those took my fancy and for the next twenty something years I worked with children in any number of different roles; sometimes with the children themselves, sometimes managing staff and sometimes working alongside childcare settings.  Still lots of variety just at a different level.  Last year however work began to take a back seat; my mum spent four weeks in hospital following a fall and it became increasingly obvious that she wouldn't be able to go home so there were visits to the hospital (a two hour round trip several times a week), care homes to be investigated, her house to put on the market and everything else that entails and all without the support which, in the past, Ash would have provided.  On top of that Ash himself needed more of me and suddenly there was too much juggling to be done and a real danger of all the plates coming crashing down together.  Something had to give so, over the next nine months and with the support of colleagues, I reduced and reduced my working hours until last Christmas when I gave up work to stay at home with Ash.  I think I did it gracefully.  I slid into a lovely round of coffee mornings, walks, lunches and days out, catching up with all those wonderful friends who'd stuck with me over the years even when I was too busy sometimes to even notice and I had a ball but I think now that there was something missing.  I worked for an amazing local charity who looked at your strengths, worked out where they would be most useful and then gave you a project that would make the most of them.  I had interest, variety and responsibility in my everyday life even at the end when the hours were few and far between and today I realised I've missed that.  I think, to be honest, that I needed the past six months as a sabbatical to clear my head but then the question could quite legitimately become 'where do I go from here?'.  When I was working I used to write myself a daily list.  It had to be a new list every single day so some things were carried across (I wasn't always as efficient as I might have been) but I would start at the top and work my way down crossing items off as I covered them and at the end of the day there was always a feeling of achievement but where are my feelings of achievement now?  'Clothes washed', 'meal cooked', 'shopping done' just doesn't cut it somehow so this morning I wrote a list of all the things I've been putting off since January and over the course of the day I've contacted DWP to finally apply for PIP (Personal Independence Payment); I've phoned the Memory Clinic to arrange a new assessment of Ash in readiness for that claim; I've had a long conversation with a lovely lady regarding a carer's assessment; I've organised with my Mum's home for her to send Jake a birthday card next week; I've checked bank and credit card statements; I've emailed a local charity regarding some of the items from Mum's house ....... and through all of this I finally feel as though I've taken back control of my life.  I feel efficient (something that may be an illusion but gives me a warm glow even so); the finances may be looking up and I feel once again something approaching 'me'.  As I said earlier, I think I needed the past six months of not thinking but it couldn't go on for ever and now I'm starting to reclaim who I really am.  It may not last but for now I'm feeling very good about myself.


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Comments

Tehachap said…
Thank you for this. I was feeling a bit fractured but didn't realize why. I have things I've been putting off and need to get them DONE, but also, I'm seeing changes in my husband's mood/daily living skills and that's an underlying worry that I don't have an easy answer for.
Jane said…
I think this starts to get easier when you realise there are no easy answers and all you can do is look after yourself. Ash is becoming less and less able but I on the other hand find myself becoming more and more capable so I've decided that the way to deal with this is to focus on the benefits to me. Feeling good about myself then sends out waves of positive feeling to those around me and, especially, to him all of which helps every single one of us.
Anonymous said…
Good luck with the PIP!
Don't forget if you are a Carer you can also claim carers allowance !
Jane said…
Thank you. I won't forget and have a phone appointment with the carers service next week to discuss benefits. NOw just have to stay strong for the battle ahead.