PSP Association
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Very mixed feelings

Yesterday Bug's went to the hospice for day care. It was her 5th visit. She is liking it a bit more especially as the do reflexology. The past 4 times I just did house/garden/shopping but yesterday I had to go to London for an evening meeting so I decided to go early and do something "normal". I went to the V&A and then to the Science Museum. I then went to the meeting (watch out for Britain's treasure Islands on BBC 4 starting in April) It was a great presentation.

The whole time felt wrong as I was by myself and Bug's should have been with me.

 I then got back to Victoria and saw all the destinations - which was the farthest away.....  I then saw I had a couple of minutes before a train home left so a quick run and home half our earlier than anticipated.

I read the posts every day. Most times anything I think of has already been put forward so please know I am thinking of you all.

Odd really this illness, Bug's would never eat chocolate as she said it brought on migraine then about 3 years ago she started eating it without problems. At least I can now get her an Easter egg.

Easter's Blessing to you all.

6 Replies

Glad Bug likes the hospice M loves the massage and reflexology sessions but they have decided that due to her lack of mobility they can no longer provide daycare as they think that seeing M hoisted is not good for M's self esteem with the others who are mainly stroke and cancer sufferers who are chatty and mobile.  You are lucky to be able to get into London easily enjoy while you can.  My routine is more prosaic if not house work or shopping it is walking along the beach (very cold at this time of year but exercise which I miss).  Hope Bug can continue for a long time at the day centre.

Best wishes Tim


Oh Tim, what a shame the hospice can't provide day care. You need that break.  Are they providing Hospice in the Home where someone will come and sit so you can go out? I can understand hoisting may make M feel self conscious but during the time C has been at ours, I've seen many hoisted and he now has to be.  I know one day they will say him going is no longer appropriate, we had a blip after Christmas, but they have said as soon as he stops, hospice in the home will step in. After his first 12 weeks, it stopped for 12 weeks and a sitter came for 3 hours, giving me time to go to my art class twice a month or shopping, meeting friends etc. He hasn't had a break since 2013. I really hope you get that time back. We all need it.


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Hi NannaB Marie Curie provide a 6 hr day cover for M but rather infrequent as has to be a nurse not usual healthcare assistant.  We do get 3 hr a week sitting for banking shoping coffee shop from care agency.  We have had an 8 wk on and 8 wk off at hospice for about a year.  Previous hospice was 12 wk on 16wk off routine but they could not cope with M when she had NGT feeding prior to PEG hence why we had to find alternative.  

Enjoying respite with my brother and family in N Scotland seeing their first lambs born, but know all too soon it will be back to the daily grind and chasing the nursing home where M can be cared for full time as I have accepted that I can no longer look after her 24/7 even with all Carers and nurses coming in.

Hope you and C are coping today best wishes Tim


Very sorry that it has come to this Tim ,  no one more than you of course .  

There is only so mch a body can take 


Sorry impossible now to return and correct now . 

I hope things will soOn settle for you both .    

Give yourself a tap on the back for how you have coped for so long ...

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My chocolate used to be safe, but it is no longer. Since developing PSP, my hubby has taken a great liking to it. So I will be hiding my egg, and hoping he doesn't make too  much mess with his! Happy Easter, everyone!


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