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A bath at last!

29/6/2015

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Yes - really! Since being in hospital from the middle of March, Colin has not been offered a bath or shower - it was just 'bed baths' for him!! But within a few days of being at Perrins, they have managed to get him into a bath - hoorah! So, it is possible despite all I was being told! Another reason to be where he is and not at home, of course.

It's difficult to say whether he is settling in - I don't know if he knows he has moved from a hospital, despite being told. I don't think he remembers much and he can't see, so he is getting no visual clues. I sourced a radio/cassette/CD player but getting him to listen to it is also difficult - I think he has become used to just lying there with his eyes closed not engaging in anything on which he has to concentrate. Obtaining a radio signal in his room is another matter - there is so much interference that I can't get any station on the FM band!

Jane.
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Colin has moved.....

25/6/2015

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..today from the hospital to Perrins House. I've deliberated and cogitated the whole situation of where Colin could obtain the best care for his needs. In the end it was one of the night staff nurses that swung the decision, really by telling me exactly what his night needs are. I have visited all the nursing homes in Malvern and one on the outskirts of Worcester and had been trying to find a care agency who could provide the amount of care (i.e. number of visits day/night and staffing) that was required at home - as home would have been my preference. In the end I could find no agencies with capacity (their term for enough people) at the current moment. So the decision was really made for me in the end. I'm satisfied that Perrins is the best place of all those I've visited (and the friend who kindly accompanied me on these visits seemed to concur too!).

Colin has had quite a tiring day all told. To begin with, transport was ordered by the hospital for 10 am - it turned up about 1215 just before Colin was able to have his lunch! So, by the time he was settled into his new room in Perrins I think he was past eating - the staff told me he didn't really eat very much. He's made up for this somewhat this evening however, even though the home is still trying to get his food the right consistency etc. I've been able to speak with many of the staff and all have asked about his eating and drinking preferences, how to thicken it and how he's used to being helped. That's all good - at least they've taken the trouble to find out. And, he has already been given the opportunity to sit in a special chair to see how well he could cope - not for very long as he was quite tired, but at least they're trying and apparently he coped really well. He will also be reviewed by the Physios tomorrow to see if they can help with his constricted right leg and to relieve his stiffness.

I've been frantically trying to obtain enough nightwear and to get it labelled with his name - I'm still at it, and hope he has sufficient whilst I'm on the case! I'm also on the look out for a portable radio/CD/cassette tape player - not sure anyone makes or sells them anymore.

So, all those who haven't visited Colin in hospital will hopefully feel more inclined to visit him in Perrins and of course the stalwart visitors are more than welcome to continue! I understand that visiting is at any reasonable time of day apart from meal times - which I think are 12 noon to about 1:30 and again in the evening from about 5:30 to 6:30. He could do with the company as I can't be there all day - that would have been the advantage of him being at home, but hey ho!

Jane.
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All is not as it seems.....

11/6/2015

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Colin continues with his good and bad episodes. I use the word episode as there can be many during a day. Sometimes there is a small window of being with it enough to work out a conversation and contribute (in his own way) and other times he is either very dozy or in his other world and doing stuff. His speech varies as much - sometimes he speaks plainly (although he can't seem to keep this up for long) but a good deal of the time it can be very difficult to discern what he is trying to say. Not being able to make himself understood, frustrates Colin quite a lot! Other times he will be talking about what is going on in his other world and woe betide you if you get the meaning wrong about what he's telling you!

However, what has been really concerning me over many weeks is his eyesight. I haven't really been able to work this out since he's been in hospital. There have certainly been times when he has genuinely been able to see - reading individual letters in a word printed in a magazine, or getting the colour of visitors' clothing correct, etc. Asking him if he could see always produced the answer 'yes', but this wasn't necessarily seeing what others would. It has now become clear that he can no longer see - there had been on and off periods with this too, sometimes seeing what I showed him and sometimes not. Now it's a world of shades of grey, light and dark. This I think is leaving Colin even more confused when there is activity of any kind in his room and even agitated. He cannot see you if you visit so PLEASE be aware of that. Make sure you say who you are and how he knows you. And then only speak one at a time - he finds it really difficult to keep up with more than one person in a conversation as he's relying very heavily on his hearing - which is not good if he's lying on his left ear. Telling him what you've been doing is a good plan but you may not get much feedback. This can be difficult but please don't give up visiting - it's what breaks up his day!

The hospital have decided they cannot continue to look after him and therefore I have to decide an appropriate place for his continuing care. That is how I have been engaged this week and it isn't a pleasant or easy task. I have many hang-ups of placing Colin in a nursing home which I won't go into here, but in the end that might be the only option.

I took myself down to the Cheltenham meeting of the Brain Tumour Support charity group on Tuesday. It was good to see those that have become our friends again. It must have been awful for them to hear me relate the lastest saga of Colin's situation.

Returning home each evening from the hospital one gets a certain view of the Malvern Hills in the evening sunlight. This has reminded me of the times Colin and I used to go walking on the hills after work - that was before work took over and left us with neither the time nor the energy in the evenings to do such a thing. Times, I'm sad to say, which we will never have again.

Jane.
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