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A page in the diary "Sue's thoughts on life"
Written by suew Friday, 13 August 2010 23:26

I am feeling better at last, more energetic too so coping better with Ray. I really wasn’t coping well when I felt tired and weak all the time. That virus sure was a nasty one. I still cough at strange times, when suddenly exposed to cold, like opening the fridge, or steam like turning the kettle off, also at night as soon as I lay down, hopefully that will stop soon.

I was reminded today how long the journey with dementia is when Ray and I ran into an older couple at the shopping centre. She has dementia and has gone from saying half sentences, to saying things that make no sense, from walking ahead of him to being in a wheelchair. Through the three years we have known them so far he has always said: “What can you do when you love each other?” And despite his confession that he is no good at cooking and hopeless at housework he is happy to look after her.

Even when the going gets tough somehow you keep on going. I can feel sure I am going to put Ray straight into care some days and the next day all is well again. Just as well I can’t put him in a taxi and send him straight into a nursing home or I might take that as a solution on a bad day.

The incontinence is causing a lot of washing so I am grateful for the sunnier, drier days. We have been through the worst of winter now so will be okay. Next year I am getting the flu and pneumonia needles so I don’t go through this again. If the carer is down, everyone is worse off. It is not as if anyone else will walk in and take our place, the family are “concerned” but do not come in and take over.

I rang to get some respite and the only booking I could get is the end of October in one of my two nominated places. I don’t like to send Ray just anywhere but here it is hard to book someone into the slot you want. I have said I will wait but could have done with a few days off right now to build up my strength again. Does anyone else find they get more colds etc since they became a carer?

My mum is not a concern at present; she just gets lighter, frailer and sleeps more and more. She slept through my last visit and slept on and off through the hour I was with her on Tuesday. This is sitting in an easy chair in the lounge area, not in bed. I guess she could go anytime now, as she is so frail. I will miss her; she has been such a big part of my life.

Onwards and upwards as one of my friends always says. It is hard to do the upwards part of the journey when I feel so often I am doing it alone, but true, onwards we all go.

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Comments from the community :

Sue have you tried using the Commonwealth Carer Respite Centre for a bit of extra respite care when you are not well yourself? Call them on 1800 052 222.That's what they are funded for!

Written by  alisone, Monday, 16 August 2010 09:22

Alison, I have used Commonwealth Carer Respite centre before but that is not what I really need. I really need an increase in the hours I can have each week as we need stability and routine not "strangers" coming in. Ray has the kind of dementia that thrives on regularity and routine. And a spare carer for the day is someone who "keeps looking for something" as he said about the last one we had.

I need to own up to needing more respite and keep fighting till I get it. Which I will do as soon as I get some energy.

Sue.

Written by  suew, Monday, 16 August 2010 22:03

I'm not sure what state you live in so it is hard to be specific about service support, but maybe you need to speak with the Aged Care Assessment Team (ACAT) at your local hospital and see if they can suggest some more services to help you - even if it is domestic services to reduce the laods of washing you are doing. Also, have you had advice from a continence nurse about the products you are using - there is such a wide range available! Even hints like getting men to wear lycra bike pants over the pad, to help keep it in place, can sometimes help.
The other thing to remember is to book regular respite well in advance - dont wait till you are at breaking point - book in for 2 weeks every quarter for as far ahead as they will take the booking!

Written by  alisone, Monday, 23 August 2010 14:47