life goes on
A page in the diary "Sue's thoughts on life"
Written by suew Tuesday, 2 December 2008 23:41
It has been a month since I've posted a diary entry. It has also been a month since I have encountered anyone in chat so I don't know how worthwhile it is to post diary entries here now as I doubt if anyone reads them. I want people to be able to read the diaries and at least learn something from them of a carer's life - my life.
Ray had three weeks in hospital and since then has had to have thickened fluids. With the Christmas party season here that means I have to remember to take thickened drinks when we go anywhere. I use two kinds of thickener as one works better for hot drinks. Both are expensive to buy so that is yet another expense. Today I took a flask full of one drink to a luncheon and a large mug full to another dinner tonight. It is just one more thing to do, one more thing to remember.
Ray has also increased in incontinence and I have to buy extra pads too. Sometimes I think of spending some money on myself but feel "selfish" if I do. I am so 100% a carer now that I often think I have lost my identity and just become Ray's carer. I guess this is a common feeling for the long term carer.
It is 18 years since Ray's first stroke on the 9th of December, nine years since I became his official carer in September 1999. It seems a long time since I had a life of my own.
I still get some outside help but have felt for some time that I need more. I am currently waiting on another ACAT assessment as I need that to get increased hours. Hope to have that in place soon.
I am entitled to a lot of respite but on the whole I find it counter-productive as Ray always comes home so lethargic and wants to sit, sit, sit and just be waited on. That is not how I want him to be. Here I can get him to walk a bit, exercise sometimes and do some small tasks. In respite he does nothing. It is a few weeks after he comes home before I get him back into routine here so that is why I only use respite a couple of times a year to give me a longer break.
He goes into respite for two weeks from next week and I am planning on doing a lot of shopping including hopefully buying some new curtains and some small furniture items. It is easier to shop when I am alone and can dash from place to place unhindered. All carers will understand that statement. There is the rest of the Christmas shopping to do too.
The family are all busy and friends seem likewise so I do feel cut off from them sometimes. This is not a pity party just a statement of how I am feeling. Okay I am grateful for a lot of things including the help I do get and the friends who stick by us. They are worth their weight in gold.
If you do read this maybe post a reply or drop me an email. That way I will know I am not on here all alone.