Felt very sad at the weekend as my nephew was married at the weekend and Ben didn't want to attend it was 200 miles away and meant an overnight stay, wedding reception was in a converted barn and looked great fun. I asked my sisters to take photos as the day progressed to keep me in the picture. It didn't think it was going to upset me as much as it did but I was so upset and Ben just didn't respond to me when I was in tears. The only comment he said was "you don't want to look after me any more do you? " I felt so alone, in the past he would have given me a cuddle and talked about why I was upset. I hate what this disease does to your lives. Went for my weekly councelling session at the hospice whilst Ben was in the Day Centre there, was good to pour out my feelings.
Well that's enough of me feeling sorry for myself, off to Bristol tomorrow to see our grandchildren. Not sure how we are going to manage sleeping on the sofa bed, getting Ben to the loo but will manage somehow as so desperate to give those little boys a big hug.
Kate x
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Katiebow
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Oh Kate felt sad for you, this is a big problem for us careers, there should be something in place to give us time to go to family weddings etc !!!!!! Just no fair. This disease is evil, takes away everything, they loose all there empathy, which is very hard to deal with, sometimes we just want them to say something nice, feel how sad we are, to be able to give a cuddle, but this PSP take sit all away.
So happy you are going to see family, will do you both good, grandchildren are such a joy, they make you feel better and laugh again. Kate sending you a massive hug, which I am sure your family will give you at the weekend.
George 4 weeks ago was so bad, but the last week, he has been alert and talking a bit, but coughing more, nice to be able to have a chat now and again.
So sorry you could not go to the wedding Katiebow . Can guess how you feel. It is our 50th wedding anniversary on Saturday. It has been bittersweet to see the smile of anticipation on his face each time I mention it. Hope I will hold together!
Enjoy whatever you can grab together while you have each other, in whole or in part. These brain diseases give all of us one HELL of a ride!
Hi Kate, that's very sad! My niece is getting married next year. I just don't know what to do. I know S will not be able to cope with the whole day and there is no way I am missing the wedding. I guess I will have to book him in for respite that week, which seems cruel, as he probably would like to attend. Still it's a long time until Easter, lots of water to flow under the bridge before then!
Enjoy your weekend in Bristol, forecast is reasonable. Although we are going to watch the cricket - England V Sri Lanka and Glastonbury is on, so the forecast is bound to be wrong!!!
Hi Heady, our son, his wife and 2 grandchildren are in Glastonbury. Our son is part of the crew so has been there since Sunday. He sent a video taken through the window of a van as they " rescued" a young woman who was stuck in an office. She came out and the water was over the top of her wellies. There was water in his tent after the first night. There was a 12 hour wait in a queue to get in today. Not sure if they are in yet. And they think it's fun!!!!!
Hope the sun shines on you and them tomorrow. We are forecast thunder storms and a months worth of rain here in the next 24 hours.
If it's fine in the morning I'll shoot out and vote as soon as C is dressed, about 7.30 am.
My sister and her husband are in the queue as we speak. Only four hours at the moment, but still have a way to go! They have lost their friends, all travelling with caravans. Yes, you are right, they have totally lost the plot!
I've done a thumbs up or down with C and he is thinking like me at the moment. Not sure he'll manage to put the cross though so probably won't count but I'm trying to help him feel part of what's going on.
And the rain has started again! I took C to vote at 8.30 as soon as the carer went because it had stopped raining. He did manage a small cross but I had to turn the paper round. He acknowledge what he wanted though by his thumb going up as the people giving out the papers asked if he understood what he was voting for. They didn't hear what I said but saw his thumb. When I was going to put it in the box they asked if I had drawn the cross and if I had, I had to fill a form in. I said I hadn't, put them both in the box and walked out. C held the pencil. I'll get a postal vote next time though.
My back is better thanks Jean. Feeling very tired though as up two nights running and had to put C to bed as the carer went off sick and they had no other staff. I've got one coming tonight though as he came this morning and told me.
It's good you could all join in with a game with your grandchildren. Our 6 year old doesn't remember his grandad ever playing with him. Sad isn't it?
Hospice tomorrow so I hope the rain has stopped by then.
Chris was a very exuberant grandad ! I have videos. Even our youngest remember that. It helps when we talk about his illness as they are old enough and have a reference point. They love him so much ! It is very moving .
I'm going to miss a family wedding at the beginning of August. Others in the family want me to find a respite place for C but I can't do it. There would be no point as I wouldn't stop thinking of him and he cried when the dog went in kennels. Over the last 6 years I've made a point of doing a lot away from PSP and also things that I can take C to but I know I have to miss doing a lot of things I'd like to do and I am quite amazed, but I have come to accept it more than the rest of my family think I should.
Ben may not have known how to react. He knows it is because of him that you couldn't go to the wedding and knows that is what upset you but he can't make it better for you. He may think you don't want to look after him any more as then you could do what you want.
PSP is such a cruel condition that changes the lives of everyone involved. Enjoy all those cuddles in Bristol. Good luck with getting Ben on and off the sofa bed and to the loo. Wouldn't it be nice if we could just pack our bags, get in a car and go without having to think about all the practical problems that may arise.
Hi, me again! I did that last week. S was in respite. Found my new "lovely box on wheels" was great for loading luggage. Just dropped the ramp and wheeled my suitcase on. Attached it to the straps and away I went. Wasnt until I got to my sisters house, I realised how badly I had packed and struggled to get the case up two flights of stairs!!! OK, you are right, I didn't use a quarter of what I packed!!!
Are you alright? Been very quiet recently. You are in my thoughts, as I know life is getting tough. I wish I could pass on a few words of wisdom, but none would work. Just know I am sending much strength and love across the ether.
Ha ha, haven't been very quiet here. As OK as we can be. Had breakfast at 8.30 today, came back from town at 2.30 to relieve sitter and managed to have lunch at 4.45pm. Threw away two pots of tea, 3rd load of washing in machine. Happy days!
No carers again tonight so am on my own again. The CHC woman is doing a review next week so I'm making a note of missed calls as I expect the agency is still getting paid.
Glad you are liking the box-mobile, think you must be used to driving it now. Glad I'm not camping out tonight big thunderstorms due here in the southeast. X
Decided not travelling to Bristol tomorrow due to atrocious weather conditions. I have a bit of a phobia about thunderstorms and set up bed in the under stairs cupboard. Have a bell Ben can ring if he needs me. Pathetic isn't it but something I can't do much about. Have to stay strong about most things but storms aren't one I can fully overcome. Oops there goes a rumble of thunder, will be making my move soon.
Reminds me of the Cold War when we were shown how to make atomic bomb shelters under the stairs. A lot of good they would have been but should give you protection from a British storm. I hope you manage to sleep.
Hi Kate, So sad when we have to miss out on lovely occasions, and get no reaction from our partner. Yes I can relate to before PSP when I would have got a cuddle and lots of sympathy when I was upset, now I just cry on my own and get on with it. Glad you are going to see family this week. Try and enjoy. xxxxx
So sorry you missed the wedding Katie. We have a family wedding in July - D's nephew - and have decided we can't go. I am so sorry to be missing it as I think it will be wonderful and all the children, grandchildren and cousins are going. Too difficult for D though and I would feel bad if I went and he didn't, that's assuming I could find somewhere for him to go for respite for the weekend. Not sure if CHC would fund that. How often are you allowed a funded break?
Sorry Ben didn't seem to understand why you were upset. I expect he did but couldn't find the words to respond properly. It's just sad for everyone.
Hope the thunderstorms weren't too bad last night. A bit of thunder here (west Kent) but don't seem to have had the torrential rain they were forecasting - perhaps that's today when we go to vote.
Don't get CHC yet or respite yet as Ben isn't quite in that place yet. His problem is that he hates people who haven't seen him for a while see him in what he thinks is this diminished man, he also finds trying to been involved in any conversation way too difficult and tiring. He has a walker and wheelchair now and again he finds it embarrassing, sure he will get used to it but all relatively new. At the moment I am his sole carer but he has one day at the hospice day Centre every Tuesday.
Chris was always very involved socially and now says " I'm a wet blanket " He struggles to find words and sometimes says he has said something which was not what he meant. It must be terrible. I really feel for him. Recently we were with three of our grand children and they all waited very patiently, eyes fixed on him as he struggled to join in. They were delighted with his efforts. [ we were playing a game ] and I felt so proud of them.
Hi Kate, so sorry you didn't get to your nephews wedding. My nephew is getting married next April and I'm keeping my fingers crossed that we will be able to attend or hubby willing to go. But this PSP is so unpredictable I will just have to wait and see. Sending you a big hug and some 🌹🌹🌹🌹. Take care, Nanny857 xx
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