Just read several posts complaining about being alone. I know how you feel. We live in the south of England. My son lives in Orkney ( North of Scotland). Bill has one son in Leeds another with mental health problems. I have a sister who is a mere 150 miles away and who does her best. Bill's brother refuses to come and see him at all. So loneliness is normal.

So I am signed up for Share and Care and I am waiting for a young person to come and share our house in exchange for 10 hours caring each week. Not sure how we will all cope but it is worth a try.

I will let you know if it works.


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  • Share and care, what a good idea! I hope you get a good youngster to help. We are supposed to be eligible for 8 hours a week of in home assistance, but the agency isn't having any luck finding anyone, I guess. It's been over a month.

    The loneliness is hard. My closest sister is a nine hour drive away, and his kids have to fly. Luckily they can do video chats, and that helps a lot. For me there is this place, and you are all wonderful. Love, Easterncedar

  • I've never heard of that scheme. I hope it is successful. Please keep us posted. Use your 10 hours to visit friends or make new ones. I joined our local U3A group after C was diagnosed with PSP and now have loads of friends who just pop in or ring and see if they can come round. 6 of them are widows and also felt lonely before joining the U3A. When Crossroads come and sit, I usually meet someone. If you have friends nearby, why not invite them round for coffee, or even afternoon tea;I serve dainty sandwiches, scones and cakes and put on an exaggerated show for fun, even use cake forks. It's not serious poshness but it does cause a lot of laughter. I've 3 couples coming at the end of the month for a regular takeaway curry night. They bring the curry with them and I feed C before they get here. We usually eat using trays so C can hear the conversation and laughter, getting louder as the night wears on. Last week when the sitter was here I took a friend out to lunch as she needed cheering up after the sudden death of her father. When C was first diagnosed I knew it would be easy to become isolated so was determined it wasn't going to happen. Fortunately I am fit and healthy so have the energy to get out and make things happen. I know it is difficult for some though, not just those looking after others. Every other week when C is at the Hospice I visit an old neighbour who moved to a nearby town. She was 98 last week, never married and the only living relative she has is a niece who visits once a year near her birthday. As she is frail now, she struggles to get out but manages the local shop once a week. She won't let me shop for her as she says I am far to busy to worry about her. She used to spend every Christmas Day with us but says she can't eat much now so will stay at home. There are so many lonely people around. It would be good if we could get groups of them all together. Maybe something for me to do in the future.

    I hope you don't have to wait too long for your young person.


  • I would love to do all the entertaining that you do. We used to have 12 friends round every month and I would cook food from all round the world but what with Bill and my Parkinson's I am just too tired.

  • I can understand that Kathie. It must be very hard for you. I hope the Share and Care is sorted quickly and is successful.

    Sending you a big hug.

    πŸ’ x

  • Hope it works out .

    I am lucky to have friends and family close as well as distant. I have 2 sisters and C had 2 sisters and a brother. So we have family.

    What I find difficult is feeling trapped with the shell of the man I have been married to for 53 years. We always talked, laughed and argued a lot. Now he often doesn't acknowledge I have spoken. I am grieving the loss but still have him. I am lucky as he can still talk and enjoy things when he isn't too tired. I dread the future losses.

    Sometimes its too much. Everyone says " its wonderful how you cope. " We're both good at presenting smiles to the world because we enjoy company.

    Here I can scream " Its awful !!! I can feel sorry for us all.

    Love to all, Jean x

  • Bill can only rarely reply to me but I know that he is still in there and when the rare flashes of his personality shine through. It makes it all worthwhile.

    Keep smiling

    Love Kathie

  • That's true. I fear its less and less. The awful thing is I know C inside is still there but trapped. He knows the words but can't find them.

    We both smile if we possibly can !

    love, Jean x

  • I think this "locked in" condition is one of the cruelest symptoms that PSP can throw at not only the patient but also their carer. Neither can chat, discuss, argue and agree with their partner of many years or do the small chat etc all communication is reduced to closed questions (yes/no) and guttarol moans, wails or if lucky mouthed yes.

    This increases social isolation as friends even the best eventually get frustrated and drift away.

    M still has her smile and laugh but frustration in my inane questions causes Irate yells.

    Best wishes To everyone but especially the caring partners/ relations.


  • S managed to type on his App yesterday, he didn't know which was more frustrating, the lack of communication or the bladder problems!!! I know I get VERY frustrated with the constant peeing, but now he can't talk, clearing up the "odd" puddle or washing a few sheets (after all that's why we have washing machines!) seems like chicken feed!!!! I realised much later, after my Saturday rant, nobody had spoken a word to me all day and it wasn't because we had stayed in either!!! I am not a person, who talks for England, so I worried that soon, I won't be able to talk as well!!!

    Lots of love


  • I have days when I almost forget how to talk but that is partly due to the endless text messages everyone sends me. I am getting an over-active right forefinger!

    I sing sometimes just to keep my voice going.

    Love Kathie

  • Often I am able to appreciate that he is as he is but , when I get reminded of what we have lost it can be too much.

    We have both cried a lot this remembrance weekend and I think its a way of releasing that sadness of our losses too.

    love, Jean x

  • I can only pray you find some one nice and fun to be around.

    Lots of hugs to you and your husband.

  • I'm not sure if this is the same thing. But my son went to NZ last year. For the most part they camped, but there was this house that they stayed in in exchange for help around the house. The community is free of all modern amenities such as electricity and running water! Yikes! But Being a landscape architect, my son found it fascinating to help the lady with a rain water retention thing .She could use the rain water for non potable items such as garden and toilet....I think....Anyway again I don't know if it was care and share but I know he had a blast and really got along with his "landlord" :)


  • Kathie. It's bad enough being the carer of someone with Psp or similar but when one is remote from nearest and dearest it's ten times worse. The feeling of isolation is compounded by the knowledge that those we thought were friends are never heard of again when they hear of diagnosis.

    My apologies to those members over 60 but I believe that the older generation is better able to understand the carer s role and are more empathetic. I am in my early 50s and have found that my "friends" are inadequate in their understanding and ability to help. That's why it's so much more difficult for those children caring for parents.

    As Psp(and others) tends to afflict younger people it is so much more an isolating disease. You have to wonder how far this affects the reactions and attitude of Soc Serve, most carers are not old and frail and are just viewed as being able to cope well. The truth is that the carers of someone with PSP/CBD/FTL has to jump through hoops whilst cooking an omlette in a sieve with rubber gloves on and a mop between our teeth. I wonder if there has been a study into whether those carers ever recover?

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