One of the saddest things

I wanted to talk about one of the saddest things ....and there are a few.........about my husband having CBD.

We have only moved to where we live now for a year and all the neighbours, who are all lovely, have never known my husband ,Roy how he used to be!

He was funny and kind and hardworking,running a very successful business most of his working life and we travelled a lot because he especially loved to. He was sporty and confident and could turn his hand to anything.....well I could go on and on! But all anyone sees now if they meet him is a poor dear man of 58years old, in a wheelchair who has trouble talking and who has to have help with everything and it makes me sad and want to cry because he is and has been so much more in his life!

I just want to shout and boast about everything that he achieved and everything that he was before this awful disease latched itself on to him and changed him forever! At least you all know now........xxxxxx

36 Replies

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  • Why not shout and boast about who your husband is. I do whenever I meet new people. One of the first things I say is, " This is Colin. He has been a wonderful husband and friend for 42 years and he still is, and he understands everything we are saying". He gives the thumbs up at this point. I have photo's on our wall taken over the years with him laughing, playing with our sons and partying so anyone invited in can see the man he was and I've made a collage of cut out photo's so I can get even more of our life on show. We have met a lot of people since PSP has entered our lives through the local U3A group and many people have got to know and love him ( he gets lots of hugs and kisses from ladies) as he has progressed with PSP. Try not to dwell on what was and what might have been. It's hard I know as my husband was diagnosed at 62 so our planned retirement adventures didn't happen but I am doing all I can now to make good memories despite PSP.

    Sending you a big hug.

    X

  • Thanks ,NannaB. For your inspiring words! xxxxxx

  • Nanna..I think I love you!!! Your words are always so wise. What a good woman you are.

    Jill

  • and ditto from jill in the UK with PSP

    LOL jill

  • HI NANNAB

    I HAVE REALLY MISSED YOUR WONDERFUL ,HUMOROUS AND SENSIBLE POSTS AND REPLIES SIICNE I HAVE VEEN UNABLE TO READ POSTS O R EPLY BUT I AM BACK NOW ANDSHALL TRY AND KEEP UP WITH ALL THE RESPONSES

    I HAV Really MISSED THE SITE SINCE I WAS UNABLE TO GET MY KEYBOARD FIXED AND MAKE THE TEXTS LARGER AND COULD NTOT REPLY OR DO ANY TYPIGN AT ALL FOR 7 WEEKS - A LONG TIME - NOR COUDL I ELT AMYOEN KNOW WHY I WAS FOF THE SITE

    and now i have to get my printer reassigned to the 'Puter as i cannot print anything off a the moment either

    lol jill

    :-)

  • Hi Jill, so pleased you are back with us. Technology is brilliant....when it works and it's so frustrating when it doesn't. Where would we all be if PSP had entered our lives 25 years ago? We would have never "met". Neither would we have been in contact with lovely folk in Australia, Costa Rica, India, etc and of course the rest of Great Britain. How would we have acquired our knowledge of PSP. I doubt there were many books about it. 22 years ago our eldest son took himself off round the world, alone. He had just left uni having studied catering and hotel management so worked his way round many countries only coming home rarely. Before he left I wrote our telephone number and postcode in all his underpants in case his body was found somewhere. He sent letters regularly ( we still have them) but they weren't instant. One day we received a letter from America and the same day his bank statement ( he told us to open them) said he had withdrawn money from a machine in Mexico, so I instantly thought he'd been mugged and his wallet stolen. Of course he hadn't, he had just moved on. Nowadays we would know straight away. He now owns 2 restaurants and is safely back in England after travelling for 10 years. By the time his brother did it 4 years later, we were really modern, we had email. I thought it was brilliant when we got it until one day we received a message from him, " Bitten by a dog in Bangkok, having treatment for rabies, insurance runs out tomorrow, can you fix it? Love you x".

    More grey hairs!

    Xxx

  • Oh I know exactly how you feel! My husband has PSP for 8 years now and we now live in Costa RIca where nobody knew the Bob he was. He is totally changed into a crippled, crazy, wild looking man who is 100% dependent and usually walking around, shuffling around, in a dazed condition with his underpants on and nothing else. It is hard to keep him clothed. He was everything to me. We have no children, no parents, no family left. He is now 72 but his symptoms started in his late 50's. My grief is always behind whatever I am doing...I explain to people what he was like, who he was. Recently people have been asking me if he is my father (I am 68) he looks that old now, about 90.

    This is beyond sad..lonely...i get to feeling 'what does anything matter if this is how it all ends up?"

    Love,

    Jill

  • Sending you a big hug Jill.

  • AND ME TOO JILL IN CR

    A BIG HUG TO U AND UR HUSBAND AND XXXX 2 YOU BOTH

    JILL IN THE UK A PSP PERSON

    :-)

  • There are never words to comfort. My mom feels the same. Sending you warm hugs.

  • Warm hugs back to you and your mum, misomaya xx

  • AND FROM ME TOO DEAR JILL XXX

  • This is even better...two times at unrelated therapies this year, one of the other wives asked me how my son was doing. We are both seventy two'. This disease has taken its toll, but not on the patient!

  • JILL IN CR

    BIG HUG STO YHOU AND HYORU HUSBAND WHO IS SITLL THE SAME INSIDE I AM SURE

    LO L JILLL FM THE UK ANOTHE RPSP PERSON

    XXXXX

  • Haven't heard from you in awhile. How are you?

    Jill

    CR

  • iam good but have been without my keyboard and latterly my computer for the last 7 weeks - a long time not to be able to read anyone;s posts (as I COUDL NOT ENLARGE THE PRINT) pr do ANY typing at al until my keybd. came back with my computer and they have now been married up again - i still have 2 do the same with my printer b4 i can print anything off

    however i have read your posts about xmas /the holidays etc etc

    and am sending u and brian big HUGS AND XXXX

    LOL` JILL

  • Life is so unfair at times isn't it, Jill.......I can feel your loneliness from here.......you and your darling husband take care.....I will be thinking of you both xxxxxxx

  • Just want to say I agree with everything above - and Jill I have also been asked if C is my father (though I was asked in Turkish when he was out of hearing so he doesn't know). The wonderful thing here is that C designed and planted our garden on what was a scrubby field and now, ten years later, we have a glorious, lush, shady green space with lots of colour when plants bloom. Of course I now have to find ways of maintaining it, but I am managing to do so (just about) and when people come here for the first time they are knocked out. It is good to tell them that C did it all. I will try to post images when I have time - busy editing a book at the moment.

  • That is lovely,pattz...I would love to see the garden that C designed and planted,unfortunately we left behind any of the wonderful things my husband did to our last house and garden, including building 3 huge compost bins from railway sleepers at the top our 3/4 of an acre garden and digging out and redesigning a seating area in the middle of the garden where he came across an old air raid shelter under a rockery which had steps leading into the ground. We left that house just over 18months ago now. I have had to turn my hand to every skill to turn our now house into a home.........but Roy says he hates it here....probably because he hasn't been able to give much input into this home, (I have tried to get him to input but he just says that he doesn't care).

    Xxxxxxx

  • So agree with all that has been said .Des was a PTI in the army once and now two nurses are helping him shuffle very slowly all the time eyes running and dribbling.

    When I do boast about something he has done earlier a little indistinct voice adds" I was still alive then".The humour is still very much alive Bless you all,Px

  • Aaaaaarh! Xxxx

  • Dear DenB. I found your post very moving and sad. My thoughts go out to you.

    I wonder if you have photos and other reminders of your earlier lives, maybe showing or describing some of the things your husband has done in his life? Perhaps if you did something like that you could make a kind of scrapbook to have displayed in the house to show to visitors, or take it around to show to your neighbours so that they can feel they know both of you better.

    Just a thought. This kind of thing is second nature these days to young people who put their entire lives on Facebook. Melvyn

  • Many thanks for your lovely reply, Melvyn

    I did put together a beautiful photo book of our last home and garden and Roy is always keen for any nurse,physio,speech therapist OT,actually anyone to look at....... And do you know, at the time I was almost embarrassed to keep showing the book to them but I have only just realised why Roy insisted so much, not because he was just showing off....because those were some of his past life achievements albeit a beautiful book too.......how completely stupid of me! Xxxx

  • my husband , when he can speak will tell me . these are the cards I have been dealt and have to get on with it . it is so unfair STAMPING MY FEET !!!! hugs to everyone .xx

  • Hugs to you cabbagecottage......what your husband says is so the truth but every now and then it just gets to you...doesn't it?

    Xx

  • Hi, I feel I have answered everything in my last post. Everything, you are all saying is EXACTLY the same for S and me! He was always hiking, running, rock climbing. Ran a successful business and we travelled constantly to various parts of the world. Loved his gardens.

    His last major effort was to design the complete refurb of our house in South Africa (with a little help from a friend!!!). Thankfully, we can still go and stay there twice a year, but I know the clock is ticking. Our garden here in the UK was his pride and joy. We use to have a huge pond ar the bottom of the garden, but that had to go, I couldn't manage it. I have had to take over the maintenance now, so have had to change quite a few things, to make it easy for me, but using the frame work that S built. I have loads of pots, filled with flowers during the summer. He helps me choose what to put in, am getting lots of compliments from others, saying how beautiful the garden is looking, I know he hates it, but equally, loves the all the colour. So very mixed feelings, not that he express any of them!!!

    We were very lucky, S planned an early retirement, making sure he structured the company, so we could not have to be involved with the day to day running. So we had five years of doing what we wanted, which included falling in love with South Africa and buying our house. I'm sure that held off us knowing about PSP any earlier. The last few years have been made a lot easier for us, because of this. I really feel for those of you planning retirement only to find it had already been planned!

    What can I say, life has dealt us a crap hand, somehow we all have to learn to live with it! If someone knows how, please pass it on, I havent a clue!!!!

    Lots of love

    Heady

  • This can only be good! .Lets all sing our loved ones' praises.Let's tell everyone a little or a lot about the wonderful things they have done before CBD/PSP, so we may know something of them as they used to be because we only hear about the suffering they have to endure now.

    Come on everyone ....start posting! Xxxxxx

  • my dear ,put a big photo on the back of his chair and show your husband,what people see now is cbd and not the person,Rollie

  • Lovely idea....thank you, Rollie x

  • Do you know what wonderful,caring people you all are on this site?

    I am so glad that I have joined in ,it makes me feel all warm and glowing reading your comments and advice...something I haven't really felt since.....well, maybe since when my husband would come up to me when I was working on something and give me a cuddle when I least expected it......so thank you all!! Xxxxxxxxxxxxxxxxxxxxxxx

  • OMG, Those were the days! When I think, how often I turned him away, because I was doing something FAR(!!!!!!!!!) more important, like cooking his dinner! When I see others wasting their precious time together, I want to scream, but what's the good, they won't listen any more than I would at their age!

    Glad you are finding some comfort in this site DenB, nice to see you posting regularly. It certainly helps us all through this crazy world called PSP!!!

    Lots of love

    Heady

  • I like the idea of posting somewhere a before PSP of ones spouse/partner/relative/friend. So we all can remember.

    I have no idea how but I'm thinking.

    Jill

  • How I agree. I am ,in my head ,often planning what I will say at his funeral about the man he was previously, completely separate to the man he is now. I feel so angry about it. But I see I need to combine the two. We do have collages about our holidays etc, A volunteer at the day care Chris goes to asked him to take in any photos. I can see how important this is to him. Perhaps the problem is that I find it difficult to see the man he was so how can he hold on to it ? Its a real difficulty. Nanna B seems to have it more together. I will try harder !! Jean

  • Denb, your words moved me too, we have left the home and garden that my man worked so hard at, but our new home is close to family so that is a blessing, i do often sit and go through past photos, and we do enjoy that, we also always loved music and like everyone we have our favourite special songs, they still move us to tears xxx

  • I know how you feel. My husband has PSP and I am trying to convince people that, although he has difficulty speaking, he has mental capacity. I see the 'real him' and I know what's 'him' and what's PSP. I do tell people what he's done in the past. I find they react more positively but I do get annoyed when people talk across him as though he wasn't there. This house is full of reminders of what he's done over the years. His personality shrieks from every corner but I'm the only one who sees it.

    You love Roy. That's what matters to him.

  • Same here...when I go to shop everyone asks about Bob and it breaks my heart when I have him out with me and a friend or neigh hadn't seen him for a few months.

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