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getting through each day

A page in the diary "Sue's thoughts on life"
Written by suew Thursday, 19 March 2009 17:13

I've been reading back in my diary entries and I can't see anything major has changed but there have been a few subtle changes. Ray is more vague as time goes by, doesn't know what day it is, doesn't remember what he did yesterday or even sometimes this morning or even an hour ago.

Ray does very little of his own initiative, he no longer clears his dishes off the table or remembers to bring in cutlery, he was still doing that this time last year. He does very little of his own volition beside eat and sleep. He does go out with me but it is a step-by-step process to get him ready and a lot of extra work for me to get him out of the house but it is worth it as it fights off depression for both of us.

He still sits on the verandah for periods of time doing word puzzles or staring into space but he spends more time in front of the television than he used to and is less active. The shower nurse still guides him through some gentle exercise three times a week so that helps to keep him flexible.

We went to the kidney specialist today and the report was mostly good but his iron level is down significantly so we are doubling the iron tablets and adding vitamin C tablets. He is on so many medications and I am sure some of them conflict. But on the whole his health is good. He doesn't have much energy some days though and I find I am helping him up out of his chair more often now.

Ray has had some more periods of incontinence but that has decreased in the last two weeks. Possibly the cooler weather is helping his kidneys to cope better. I love our autumn, cool, sunny days, cold nights. The days are so beautiful now.

I have had computer troubles the last four weeks so have caught up on some odd jobs. Being without the internet has left me feeling cut off from all the wonderful friends I have made in my cyber world. The support I receive from a few on this site and more on the Strokenet site makes a real difference to how I cope.

In real-life friends from our past hardly contact now, I can understand that as we have less and less in common . I know for some people the thought that dementia is somehow a "mental" illness does keep them away and it is out of sight, out of mind. I find my church friends and friends from the associations we have belonged to for many years still are okay with us.

God bless all of you in your struggles to make some sense of your life when someone you love is living with dementia.

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Comments from the community :

I'm "free" for this week while Ray is in respite. Last week I went away with a group for five days, it was odd being in a motel room on my own. Of course it rained four out of five days. It is not often I get to be "Sue alone" and after nearly ten years as a full-time carer I have lost the knack of being by myself. So it felt awkward when I made up five at a table or ordered my own drink and acted like an independent woman, not just a carer.

Now I am doing some house cleaning, all those jobs where you need to spread things out. I can't do that with Ray here for fear that he will try to get through anf trip and fall. So many worries if you are a caring for someone. I know a lot of it is fear, that feeling that if you are not vigilant "something dreradful" will happen. The weeks Ray is in respite I still listen for any small noises in the night that might indicate something is wrong. Silly eh?

People always tell me to: "take some time for yourself" but what do you do as a freed carer with some time on your hands? I have done the shopping, caught up with the laundry, tidied some of the drawers, now what? I guess it is hard to resume a life of freedom when it is so soon to come to an end and it is back to being a full-time carer again.

Written by  suew, Wednesday, 8 April 2009 19:09