Last week our doctor "call me Emma " phoned to say she had been talking with my daughter and she thought we should all meet to discuss a future care plan for Veronica . She wanted to contact the hospice supervising nurse the community matron the OT and she wanted the main lady who comes in to look after Veronica on Monday afternoons be at the meeting too. So it was all organised for today . My daughter Kate was down from Worthing for Veronica's birthday yesterday ( a sad and happy day ,you will all understand I am sure ) so it all came together.
Like an innocent lamb to the slaughter- that was me .Three very strong women reading me the riot act about looking after myself , taking on more help and getting a respite break - didn't stand a chance . No matter that I explained that I had always had bags under my eyes and that looking tired wasn't necessarily the same as being tired ( mind you last night I was woken at three am by raucous pop music coming out of the baby alarm as Veronica had somehow managed to switch on the clock radio by her bed ). There was no place to hide apparently even the hospice nurse had made some comment . I did say just read the blogs on here and find me someone who isn't tired .But all to no avail - so I am being organised and am going to have to learn to do as I am told (maybe).Secretly it is quite nice to know that other people are concerned about me - but I am not telling them that !
Georgepa- ( the baggy eyed )
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Georgepa
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It is good to know someone is looking out for you and hopefully some good may come out of it. We have had a couple of similar meetings where various things have been suggested to help me. Some I have accepted but others I haven't. One was that C should go into respite care to give me a rest. I said I didn't want it. I know, some may think I'm mad but he hates being away from me and I couldn't relax knowing he was upset. My main worry though....would I want to go back to how it is now if I had a couple of weeks of freedom? Would I be able to get into a routine again? I don't want to find out. It will be interesting to know what they suggest to you.
NannaB - my fear was that I would not be able to get going again once I stopped . But what I was told in no uncertain terms was that maybe not now but at some point there is a risk of burnout in carers . They say they see it time and time again , then who is going to look after your loved one . They also say the first break (respite ) is the hardest but that in the long run it is good for both of you- the person you are caring for needs to have experience of other people looking after them just in case anything happens to you . I know Veronica will hate me going away and will make an enormous fuss ,cry , claim I am abandoning her etc etc .I am planning just two nights as a first time effort -I doubt I will enjoy it but I feel it is important for both of us . Without me Veronica would obviously not be able to cope and so the argument is that the carer at times must be selfish and take that break or they may very well crack up - so I am going to give it a try . When V first went to the hospice day care she kicked up merry hell but now she looks forward to it - it adds another dimension to her ever shrinking world .The planning of it fills me with horror -meals , V's routine even remembering to put the cat in the conservatory at bedtime ( she always thinks its hide and seek time )But I am going to do it and if it is a disaster well you don't have to do it again .Anyway I will keep you posted guilty feelings and all !
Georgepa
PS I am too frightened of the three strong ladies not to !
I think the care at home idea is much better. At least it will be 1-1. If she wanted attention, V wouldn't have to wait while others are being seen to. C has been away from me on 3 separate occasions and I must say I did enjoy not having to clock watch all the time but it was hard getting back into the routine afterwards.
I'm sure it won't be a disaster Georgepa. I went to places I couldn't take C. I climbed a church tower, went to NT houses and went to see friends who have houses with difficult access. I did feel sad C wasn't with me but enjoyed it as well. Our situation has changed now though.
When are you having time away? Has the date been booked yet?
I look forward to hearing about your adventures and try not to feel guilty although it's difficult not to.
Hi NannaB, think that would be my main concern as well!!!
Lots of love
Heady
As I have already said on here getting C into day care two days a week which only started a couple of months ago has literally saved my life. I would love to be able to go away for a night or two but doubt that will happen. Due to cost constraints I now concentrate on having people staying here with us as much as possible to share the care burden, plus garden and odd DIY jobs that are beyond me and for which I can't find a man to come and do. My daughter is moving here from UK on 1st September to also help (as well as setting up design workshop in our garden shed preparations for which are occupying me greatly at the moment). Given our situation I am totally aware of the importance of maintaining my own health and you must be too. C would rather not go to day care but I've told him it is non-negotiable for my well being. You will really benefit from time off and Veronica will soon get used to your absences. I think you just had an intervention!
Hi GeorgePa, what can I say, but, WELL DONE KATE!!!!
George, we all know that you were starting to struggle, who isn't on this site. We all know that the last person that was going to admit this, was YOU!
Of course it's going to be dire at first. I understand ALL your feelings, even the ones you are not saying!!!
We are all looking forward to your tales of freedom! Even if it's only for a couple of nights.
I am afraid this is just another hurdle that PSP is throwing at you and you will get over it, just like you have all the others.
Its such a difficult time, I know. We are nowhere near your situation but I do know how vital it is for me, the carer, to be alright. Just as it was when I had small children. It doesn't do for the carer to go under. You are lucky to have your daughter. Listen to her. You know she loves you both.
I hope you find a way that you feel comfortable with and gives you "caring for yourself " time.
I have been tremendously lifted by your posts and hope you can find a good way forward.
Thanks Jean- I am sure I will -just at the moment it seems difficult to see the way ahead but with all the the help and support I get especially from my daughter I expect things will pan out and I do understand what you are saying -. Its just not that easy to put into practice is it .
I AM VERY PLEASED TO HEAR THAT YOU ARE GOING TO BE TAKING SOME 'ME TIME' IT WILL BE GOOD TO READ OF YOUR FEELINGS ABOUT HOW YOU GET ON AND MAYBE ENCOURAGE MY FRED TO GET SOME RESPITE TOO - I ALWAYS SEND HIM YIUR COMMENTS AND WINDERFUL PROSE ABD HE IS ALWAYS VERY COMPLIMENTARY ....
George I lost my wonderful wife on the1st February this year Anne new that the psp was taking her away from me and she was so brave she wanted me to remember her the way she was before that blasted psp took over her life and the wonderful years we had together so George I looked after Anne at home so she was always with me I could hold her tight and to tell her how much I loved her remember those wonderful years before psp best wishes from another george
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