Totally Overwhelmed!

I am totally overwhelmed by all the lovely moving posts I have received from so many of you. I apologise for not replying to you all personally which I really wanted to do but now is the first time I have been alone since Colin left me. Our sons and their wives have been around day and night and they have been amazing. All the equipment was collected at 8am on Tuesday and the family have worked so hard. I now have a dining room downstairs again and another fully furnished bedroom. With my blessing they cleared Colin's clothes, shoes, toiletries etc. They said they had divided themselves into two teams. Team A were responsible for clearing the wardrobe and drawers while team B took me around to garages to buy a car as my mobility vehicle is going back soon. I bought a 3 year old Citroen Berlingo, identical to the Berlingo I've been driving except for the colour and no adaptions. I've also booked a holiday in May. That was quick I hear some of you say but it is with my friends from the U3A and the deposit had to be paid by next week. I've also been "told" I'm going on a trip to a Polish Christmas market with my wine group friends.

Of course there have been tears like when I heard something funny and went into the dining room to tell Colin and saw the table instead of a bed, when we listened to the music we are going to play at his service of thanksgiving and when my many visitors came and said nice things to me and about Colin.

Friday will be hard but we chose that day on purpose. The service will be at 2.45 in our church followed by afternoon tea at our local restaurant/pub. Then at 7.30, weather permitting, as many as want to will be going to the local park for the village firework display. We are sending Colin off with a bang. He would like that and our grandchildren will remember a happy day I hope.

My heart goes out to all of you still on that roller coaster. I did wonder today how I survived those 6 years since diagnosis and without my deep love for Colin, my faith, my family and my friends on this site and those I meet, I don't think I would have.

Thanks to you all.

Big hugs and lots of love from Bev

XxxX

79 Replies

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  • Darling Bev

    As I've said before and I'll say again you ARE a walking miracle and I love you for it!

    Again I'm crying as is my mum your attitude is fantastic and I want some of you in me!!

    I'm delighted you've booked a holiday and possibly another one!! I'm equally pleased your family have rallied round and helped you!

    We will be thinking of you Friday (I'm thinking of you constantly) at the moment! My love, hugs and prayers are with you!!

    Darling nannab don't be a stranger ❤️

  • Thank you Satt2015. I wouldn't leave the site yet, even if I probably won't write as much. I want to see how you are all doing.

    Big hugs to you too.

    XxxX

  • Beautiful, Bev. love back to you. Ec

  • 😘 XxxX

  • i agree

    lo9l hkjilll

    cxxxx

  • Colin out with a bang huh? I should say what a grand way to leave this world and even grander way to be remembered! Well you sound good Bev. May God continue to bless you all the rest of your days!

    Love you and Bruce and I will be at the village fireworks if even only in heart!

    AVB

  • Thank you AVB

    XxxX

  • Sending my love to you all, it is such a sad time but , to celebrate your love together with your family and friends and celebrate it with smiles and happy memories. that is the best thing, i'm smiling with you, God bless xxxx

  • ❤️XxxX

  • Dear Bev, it is a wonderful thing when family and friends can step in and help to deal with the practical things that can prove so painful if left to do on your own. So glad you booked time away, I'm sure you must feel tentative about taking such steps but good for you to be brave enough to make that decision. During those six years of love and dedication you must wonder if you have already done some of your grieving as PSP slowly took away the man you knew and loved, I hope that is the case and you are soon able to reclaim your life albeit without him, a hard thing to imagine I'm sure. Take care Bev.

    Love and big hugs

    Kate xxx

  • Hi Kate, you are correct. I think I have done a lot of grieving especially during those first few months after diagnosis. Obviously I still have a little weep at times. I did today when Dave, our pastor, told us some of the things he was going to say about Colin but there is still laughter even now.

    I hope we can still keep in touch Kate and please feel free to pop in whenever you are in the area. If I'm in, the kettle will soon be boiling ready for a cuppa.

    Take care.

    Love Bev

    XxxX

  • Lovely to have a post from you. I've been thinking of you everyday.

    A friend of mine passed away two years ago early November and on the day of her funeral, when I got home, there was the local firework display at the back of my flat. It was so lovely to watch from the window and really did seem to be fitting as she had suffered so much with cancer. She went off with a bang.

    Much love to you xxx

  • Ahh! A happy memory made in the time of sorrow.

    Love to you too.

    XxxX

  • Dear Bev, both of us have always said at times like this, grief is private, personal and can only be done one way, that's your way.

    Think I will tear that up and say it should be done Bev's way. I am so proud of you, booking that holiday, taking positive steps already. The polish Christmas market sounds great as well.

    When my sister lost her husband at the age of 30, she accepted every invitation going, from day one. I asked how she could do it, her reply, "Nothing can make me feel worse than I do now, if I don't accept these invitations now, when I am ready to join the world again, they might not be there" I grew up that day, thanks to my little sister.

    Furnerals are not great under any circumstance, this one will be extremely hard for you, but I hope, planning Colin's Big Bang, knowing what pleasure and memories it will in still into your grandchildren will give you enormous comfort. When my Dad died, the hurst couldn't draw up outside his house. The undertakers were also the local hardware store, he lived in it practically. so we had him wait for us outside the shop. He would have thought that hysterical. That has got me through some tough days. Just as Colin, will be praising you for this wonderful send off.

    Yes, NannaB, the good folk on here have helped you along the journey, all the old names come flying back into my brain, with their comments. Mostly what comes to mind, is the very unselfish way, you have always been there for us all. For me it's over three years now,others, this may be their first post. You are still showing and actually doing things, that set us all a bar or standard that we want to achieve.

    I personally want to thank you. Bev, you have past down over these long years to me, your know how, your courage and calmness. Even when you were having tough times. S is cared for so much better, than I ever thought I was capable. It has given him a good year longer at home. For that I will be internally grateful. Don't manage every bit of advice, but enough to make a difference.

    I will be there on Friday in spirit, making my respects to Colin and sending all my love and best wishes to you and your family.

    Lots of love

    Heady

  • Thank you, Heady, for saying so well what I have been thinking. NannaB has been all that for me, too, and for all of us. I say 'amen.' Love and peace, one and all, ec

  • Heady, I think I will have to 'copy and paste' those words, don't mean to be doom and gloom, might need to send them to you in the future, I think your my NannaB! Not that I don't love the real NannaB

    Lots of love

    Debbie xxxx

  • ❤️XxxX

  • Oh Heady, when I read your posts I always think we are on the same wavelength and you have helped me a lot. I repeat what Debbieann said, you're my NannaB....if that makes sense.

    😀❤️XxxX

  • Thank you!

    Lots of love

    Heady

  • Heady what you said about Bev's courage and calmness is so true. She has gotten me through and helped me to see how to love your mate through the toughest of times. Thank you for words Heady. I could not find any words for anybody when Bev's love died. I pray that I can manage when B dies, but quite honestly the stress from this death has sent my own bad neurology into fits of seizures and I havent even been able to get to this site....I still cuddle withmy husband at night. I know my husband is going ot be ok when he goes. I believe in Heaven and that his life has been directed toward that ultimate goal. But what about me back here on earth. I see me sitting there, a blithering idiot, not well prepared emotionally...Christ, I had a week of seizures cuz of Colins Death....what am I gonna do when my love leaves me......

    Rethinking my Reality

    AVB

  • Hi AVB, sorry you are struggling. The problem with hearing about the death of someone else, that you are not personally involved with, it makes you think of other losses or in our case, a future loss and you are not mentally prepared, so it hits you very hard. When we have to face the loss of our men, mentally, we have been preparing for it , for some years. Plus, that wonderful thing called numbness will kick in. Afterwards, it's a very busy time, lots of positive things to do and deal with. OK, I know that doesn't last long, but it gets you through those first agonising weeks.

    After that, who knows how any of us will react. I have never been a strong person, always let everyone walk all over me. Since PSP came into our lives, I have felt that I have grown up. I am no longer the nodding dog. I really hope I will take that forward into my next adventure in life. I suppose the bottom line is, I will have no choice, but to get on with life. Nor will you.

    I know you believe in God, perhaps you are feeling deserted at the moment. Could be, that he is looking after Bev, in her hour of need. When your time comes, he will be there for you, of that I have no doubt.

    Sending you a very large (((hug))) and much love.

    Lots of love

    Heady

  • Thank you Heady. In anything we do, it's not the doing it as much as it is the anticipation of the doing it that leads to high tension and second guessing if whether one can survive it....why are my sentences always so long.... ;) I have a few less brain cells than I did a week ago and for whatever reason, my panic button seems to be permanently pressed . when I feel like i have my szrs under control yet again I will feel good. We are up to vote for medical marijuana....It really did work for me when I smoked it recreationaly. I don't do that anymore but I am certainly not against it's medical advantages.....to those hard heads that want to keep it illegal I say ....then illegalize alcohol which is much more deadly than marijuana....but I digress....

    If you ever notice Michelangelos Creation of Adam, You'll see the Almighty, actively, with all His might reaching down to Adam . Adam on the other hand (literally) lackadaisically reaches up to God as to say "Yah whatever..." Even he who was the first made, had little faith in God. I find myself like Adam , when times are good (when are times good with PSP? anyway...) I may or may not reach out for the Almighty. But the Almighty is forever actively reaching out for me...Thank You God....sorry I can't do the same esp. since it puts me in ruins when I lose my touch! :)

    I am giving you a ((BIG HUG)) too Heady, I really need it, thank you darlin!

    AVB

  • O heady you sound so much like myself. , never one to come to the front or fight for myself. Could never say no .

    How different I am now though . Stronger than I ever imagined I would be for John .

    I suppose because I am his voice his everything ,

    I hope one day I will be as strong fo myself when it's needed. Not so sure that will happen .

    ,shall we make a pact ,

  • Definitely!

    Lots of love

    Heady

  • Heady

    You gave me that same advise and I took it to heart. Nothing can be worse than what has already happened. I have been keeping busy and have tried my best to say "YES" to the invites even when I feeling so sad.

    Love it..."Nothing can make me feel worse than I do now, if I don't accept these invitations now, when I am ready to join the world again, they might not be there".

    So grateful. XOXO

    Nikkie

  • A brave reply, Nikkie. Good luck. It will get better.

    love, Jean x

  • Thank my wonderful sister, (she is the wise one) who recovered from the sudden loss of her husband at the age of 30. Has recently celebrated a 25th wedding anniversary, with her "new" husband and busy getting ready for their daughter's wedding in April. Life does go on!

    With the attitude you have got, you will come out the other end, ready to start over. Find yourself a new meaning in life. Don't close your eyes, because it won't come from the way you think, it will suddenly creep up behind you and lo and behold, there is a whole new way of living for you.

    Sending big (((hug))) and much love.

    Lots of love

    Heady

  • So true Heady

    XxxX

  • So true! I'm in that fearful stage--my body guard is gone! Les took care of everything and now it's all up to me. Trying to check off the many items I have on my "to do" list. One day at a time friend. We will get through this and again, the worst of it has already happened. Huge hug right back at you Heady!

    Nikkie

  • I know what you mean about the missing body guard. But, if I think about it, I have been in that role for a few years now. It been six years now since S was able to contribute to the running of the household or business and I suspect I have been making all decisions, long before that. Nikkie, you are doing OK. That list will take time and patience.

    Lots of love

    Heady

  • Thats true for me too but letting go of the " body guard " must be so hard.

    You will be fine, Nikkie

    love, Jean x

  • Bev you are one of a kind.

    Hugs, kisses and love,

    Audrey

  • Bev I have thought about you every day since your darling left you. So glad you have booked your holiday for next year, and going to the Christmas market in Poland. As I said before you have been an inspiration to a lot of us, you have always been there, helping to solve a problem with us, without your wise words over the last 2 years, I think I would of caved in.

    Will be thinking if you on Friday, with my candle burning for Colin, he is in a much better place, away from this evil illness.

    Bev one of the posts said that we grieve for our loved ones from the beginning of this illness, I am sure it makes it a bit easier, when we loose them?

    Bev sending you a massive hug, and I would personally like to thank you for all your kind words and the wisdom you have given me, in the last 2 years, may Colin rest in peace. Yvonne xxxxx

  • Yvonne, yes, I think you are right. We do grieve for our loved ones from the beginning of this illness. A member of our ukulele group called on me the other day to offer condolences and apologies as he would not be coming to the funeral as he would be in the USA celebrating his 70th birthday. I responded by saying, light heartedly that I was very disappointed he hadn't thought to cancel his holiday in order to attend. He laughed and said that he had been in conversation with someone who said to him that, if it were her husband who had died, she wouldn't be able to laugh and joke with people like I did. He said his response to her was, "Bev has been grieving for the last 6 years. Now is the time to let go and remember the good times. That's what Colin would have wanted".

    Thanks for your kind words Yvonne.

    Take care.

    Bev XxxX

  • Yes Bev we do the grieving gradually , I did the same with my mother who had a strike and lived for three years , then as she passed john became diagnosed. .

    I don't know how to cry anymore .

    It's a waste of the energy we need to cope .

    In my mothers case .my grief and some anger after was for what she suffered . . That does fade though .

  • Bev, I can't here at 2am find anything to say but that Heady got it right. You have helped me keep my dear at home and carried me through some very difficult times. You have so often represented to me the warm and practical heart of this community. I do love and admire you. Easterncedar

  • P.s. Don't worry about replying to everyone. I bet no one is concerned about it, and all know you have other things to think about. Love, ec

  • Thanks EC. It's 4.50 am and for the first time in 3 years I'm sleeping away from home. I forgot what it was like in a city as I live in a village and even though PSP kept me awake it wasn't like this. Life doesn't seem to sleep here, especially as it is a seaside city where most of the houses in this road are now student flats. Students who are witches, zombies, even a heavily made up scary bride on stilts and who have been partying all night. So I decided to check out my friends here on this site. Two days ago you were awake at 2am. I hope you are sleeping better tonight. Some time ago my 6 year old grandson asked why I never visited him anymore and I said grandad can't get in your house, up the 6 steps to the front door. Yesterday he opened the door shouting," You came to see us" as he flung his arms around me". That felt so good and I can't wait for my early morning snuggle".

    Thanks for your kind words. I won't be able to answer everyone but it's good to be able to keep in touch when I'm lying in bed listening to very strange noises coming from outside.

    Take care.

    Love Bev XxxX

  • It's perfectly dark and still here in the hills right now, although the motion sensing outdoor light turns on now and then to warn us of a blowing leaf or passing fox. The light snow will tell which when I go out in the morning. Nothing like witches on stilts! Still, I am awake a bit too early, having had the usual call to change clothing and bed pads, and will try to get back to sleep. Lovely to know you have the happiness of your grandson for comfort. Love, ec

  • Just reread this, and it made me smile again. Such a sweet grandson!

  • Hi Bev, I have just seen this post. If ever a child said the right thing at the right time.... What a moment to treasure.

    I went to see my son, a few weeks ago, when S was in respite. It was the first time in five years. I know I have seen them regularly, but seeing your child and grandchild in their own environment, well you can put your antenna ( Mothers intuition) to work, to make sure all is well. Thankfully, I got a positive vibe.

    Also read the previous post about a woman thinking she would not able to laugh at time like this. If you can't laugh now and crack the odd joke, well we might as well all give up. It's a natural release valve, just as important as crying. I feel really sorry for her.

    You carry on laughing as much as you can, Colin not only would want you to, he is demanding it!!!

    Lots of love

    Heady

  • Dear Bev. It is lovely to hear that you seem to be doing so well and that your wonderful family are all rallying round. I am lucky too with my family being here for me but I don't feel nearly as 'together' as you. And how DID you get them to collect all the equipment so quickly! My running battle with 'them' has continued as I wait in for people who never turn up.

    I am sure Colin will have a wonderful send off on Friday and I will be thinking of you. Thank you again for all your wonderful posts over the years. Derek and a I were truly fortunate that our time on this site corresponded with yours, as we both benefitted hugely from your balanced view on things and your gentle sense of humour even when times were tough.

    With love

    Vicki

  • Hi Vicki, I hope your equipment has all gone now. When I asked for it to be collected I reminded them that the reason they gave for the 7 week delay in collecting his rise recliner earlier this year was that bereavement takes priority. I told them I was that priority.

    All the best.

    Love Bev

    X

  • Amazing BEV ,

    I have been thinking about you and will continue . Your attitude is inspiring .

    So glad you've booked a holiday to look forward to ... you so deserve it!

    My prayers for Friday at Colin's thanksgiving and a great idea for fireworks in the park!

    Keep in touch

    Much love

    Jude xx

  • We're with you in spirit, Bev. The fireworks are exactly right.

    My fathers' funeral was a very warm and comforting , although sad, experience. The words said represented him so well. It was humorous, my son played his saxaphone and we were with all the closest family and friends. I am sure that will be so for you and Colin, who was a very special person and very loved.

    I know you will be allright but its hard to continue without the love of your life.

    All our love, Jean and Chris xxx

  • Thanks Jean. If you ever want to meet up, please let me know. It will be good to keep in touch and I won't have to rush back home.

    XxxX

  • Yes.I will phone you. Love, Jean x

  • Hi Jean, the service of thanksgiving has been planned and the ukulele group want to play as a tribute. I won't join in this time though. Colin always offered tea and biscuits to everyone who came through the door so our son wants the four grandchildren to hand round biscuits while the uke group are playing. I've got to speak to the pastor of the church about that one. I'll let you know how it goes.

    Lots of love

    Bev

    X

  • Beautiful post. Life does go on, as I've had to realize after losing my Kim, almost 4 months ago. Close friends and family make all the difference. Prayers to you and your family.

    Ketchupman

  • And to you Ketchupman. I hope you are finding fun again.

    Lots of love.

    Bev

    XxxX

  • Agree with everything Heady and others have said. You have been a source of great strength, positive advice, humanity and humour. So pleased family have rallied around you. Enjoy every opportunity you now have you have earned every little pleasure. Be kind to yourself during those sad times too. Will be thinking of you on Fruday and during the fireworks later in the day.

    Xxxxxx

  • Am thinking of you to day as you celebrate your COLIN. I was not able to latch on to this site until about 4 months before Bill died so I did not get the support that you and everyone are giving each other. It truly is amazing. But I am reading now and being so comforted after Bill has gone on ahead!!! I too kept Bill at home as he wanted. It was hard because it was not real to us that he really WAS going to go. And now that he has it is so unbelieveable. So quiet. We have 3 daughters who are grieving but having to work too so it is hard for them. And 9 grandchildren. None of us looking forward to Christmas so I booked a cruise for Christmas week. That will give us all time to be together to be Gaga over the cruise as none except one and me have ever been. And to celebrate Bill and our 50th anniversary which was in June.

    So in my desire to comfort you I have gone on about us!!!!! I am sorry. I pray that you are being comforted now by your many friends and family. You are a strong woman I can tell. Your holidays will bring you comfort also. And you will find that Colin will be along!!!!

    God bless

    Sue

  • Oh Sue, what a lovely way to spend Christmas, on a cruise. We managed to go on one 7 months after diagnosis as it was amazing as I'm sure your experience was. It will be lovely to have family around you without being in familiar surroundings where Bill once was. All of our 3 sons have invited me to join them at Christmas, one of them with his wife and 2 children are spending a month in India. I declined that offer. It will probably be amazing but as it included travelling for 13 hours on a train, I decided to accept the Suffolk invitation. I haven't been able to visit Suffolk for 3 years. Son number 3 only lives 6 miles away so I see him often.

    I'm pleased you are discovering life after PSP and have your family and happy memories to see you through the dark days.

    May God bless you too.

    XxxX

  • Dear Bev

    I have just read your post. This happens a lot that I don't get posts for a couple of days!

    I hope the memorial service was as you wanted it to be and the fireworks are a great idea.

    I am a newcomer on here but you have been so kind and welcoming. In fact everyone has but I wish I had the wisdom you have. I feel like crawling into a corner and giving up. Then tell myself off but I don't feel any better. You are an inspiration! I am delighted you are going on two holidays. If ever anyone deserved to it's you. I am sure your husband would approve too. He will be watching over you and I am sure he will laugh and smile with you. There are a lot of very special people on here but you have to be the shining star as you must surely have helped everyone?

    God Bless you and keep in touch with us as we are in need of your wisdom.

    Marie_14

  • Marie, every one of us felt like you, at the beginning. You know the saying, "wise, after the fact". That's what we do on here, is pass on our mistakes and how we got over them. I'm betting, in a few months, you too will be writing words of wisdom.

    Lots of love

    Heady

  • Hi Marie, I found the first 2 years after diagnosis the worst and many times thought I can't do this any more but after one very difficult day said to myself, " If Colin has to go through this, then so will I, I can do this". Please don't tell yourself off. You are doing all you can and mustn't blame yourself for how you feel. It's hard, very hard and although it's not going to get better, things do change and in some ways become easier. When Colin could no longer walk it was heart breaking but he didn't fall any more (apart from diving off his wheelchair a couple of times) so I didn't have to be by his side constantly. When he started wearing convenes it became easier for me. There are lots of changes over the years and hopefully, you will get used to living a new normal life.

    Be kind to yourself, accept any help offered, invite friends round who you know will make you laugh and get out of the house as much as possible.

    As Heady said, I'm sure you will soon be passing on your knowledge and experience to others here.

    Very best wishes.

    XxxX

  • Bev

    The problem is it is moving so quickly. I am advised he is in the advanced stages. It is just 12 months since he saw the Neurologist. Then we had a wait of 3 months to see him again and then a month. During that time he went from walking and driving to being unable to drive and only able to walk with a frame. Now he can't even stand, is struggling to speak. Has to use a special cup to limit the amount he drinks. He can't read or look at tv. Won't listen to the radio either. I am starting to worry about his eating. He seems to put too much into his mouth. He has lost weight, his left leg is like that of a famine victim. He has pain in it a lot too.

    To add to that the main artery from that leg to his heart is blocked. He has unstable angina and a very rare Leukaemia which was being treated sucessfully. Then this came along on top of everything else. We are both struggling so badly. My two children are too and our two grandchildren as well. We are just crumbling as a family. We have no other family to turn to.

    Our friends deserted us when they heard he had Leukaemia. We only have one who takes me to see my husband but he goes away a lot. The only other person we have is someone I hardly know but who has been really kind. She works part-time though and has her own health problems. So we really are alone in a nightmare.

    The so called professionals who are meant to help us have been nowhere to be seen. We have only seen the Parkinson's nurse twice since the end of February. She hasn't done anything to help sadly. The GP has seen him 4 times in all that time. The Social Worker is frankly useless and not very nice either.

    Now nobody will visit him where he is because it's not in their area! He doesn't want to go into a Care Home near to where we live. He just wants to come home. Not sure I can cope with it all again though as nobody ever offers to stay the night or even the day! I had a sitter twice a week on two days. They sat for 3 hours but as I don't drive I really only had two hours to do anything. A few times I just went to bed as I was so tired.

    I have read variations of this story on here but nobody seems to have had it for such a short time before going downhill so quickly.

    Bev please don't reply to this. It will fry your brains when you need to recover your energy after the loss of your loved one. However if there is anyone out there whose loved one went downhill this fast I would love to hear from you. Everyone seems to have had a gradual decline. Or is that just how it seems to me? Feeling very depressed to be honest. Don't want tablets but might have to take them.

    Love to you all. At least I can type it all and get it out of my system for a few hours.

    Marie_14 xxxx

  • Dear Bev,

    I know that when the sad time comes for me to lose my darling husband, I will think of all your lovely words and your courage and the way in which you have dealt with your grief and it will help me so much.

    Thank you and lots of love

    Denise ❤️

  • Wishing you lots of love. Mums funeral is Tuesday. Was doing ok until I got the order of service through to proof read. Made it very real then! Xxx

    Carolyn

  • You are in my thoughts and prayers today Carolyn.

    X

  • Thank you x

  • Dear Bev,

    I too want to send my love and thanks to you. I'm still on the journey with Mum but members like you have helped me every day with directions on how to travel it. I was born on the 5th and my parents used to say I was born with a bang. I've always loved fireworks and I can't think of a better way to celebrate someones life. Good luck in the future and although I'm very sorry for your loss you must be so glad that you let him go at home and with you by his side. x

  • Happy Birthday on Friday Dizz58. Hope you get to see some fireworks.

    X

  • Oh Bev , I sobbed when I read your post, my heart goes out to you at loosing Colin, but wow what a send off you have planned, I found choosing music for mum and dads services so upsetting,made me/family cry all over again, even tho we'd chosen light hearted, what a perfect send off you have arranged, I will be thinking of you

    Debbie xxxxx

  • Dear Bev. It's wonderful that you have so many family members and friends to help you adjust to a new chapter in life. I wish you all the very best for the future. All my love Maddy x

  • This difficult and long road we have all been called to has been easier to bear with all of us walking alongside.. am glad this chapter has come to an end for you Bev, but thank you , thank you, thank you.. for being the inspiration and support and guide and fellow sobber. Lovely to know that so many are rallying around you at this difficult time.. let us know how your holiday goes and if you ever come to Dubai, do let me know!

  • Dubai, that sounds wonderful. I'll add it to my long list of things to do.

    X

  • I am sending much love to you and will be thinking of you and your family on Friday lovely. I can only hope that when it is my dads time I will have the same courage and strength as you have shown. You are truly one of a kind and we are all so very lucky to have you in our corner.

    Much love xxx

  • Best regards to you and your father..My Dad was diagnosed three summers ago and his eye sight is steadily deteriorating..

  • NannaB (Bev)

    So proud of you for moving forward. I can't seem to get rid of a thing that belongs to my guy. His older kids said they would be back to visit me and assist me with cleaning, etc., but so far nothing has happened (it will be three months on the 8th). I haven't even gone to the business to clear out his office. I need to be strong and just need to get things done.

    Prayers for us both.

    XOXO

    Nikkie

  • Dear Nikkie, I had rehearsed this time in my mind many times over the last few months and now I'm playing out the real thing. The family were a bit surprised when I said they could clear all Colin's clothes and toiletries two days after his death but I knew in my mind I would find it harder if I left it. I didn't want to see his clothes hanging in our built in wardrobe. I couldn't just shut the door on them, I saw them every time I looked at my clothes and know I wouldn't have coped with that. I haven't yet spread my things to his side but I'm sure he will laugh when I do as he would often find things of mine had crept over a bit and he would push them back and say I was trespassing.

    If you asked his older kids, would they come? They may be waiting for you to say something, thinking it hard on you if they suggest it.

    I will definitely pray for you, that you find that inner peace.

    I feel peaceful today.....tomorrow will probably be a different story,

    God bless you Nikkie

    XxxX

  • Thanks Bev. No, I have not asked them. Our younger daughter told me the same thing. I am ready to declutter and get things organized and even think I am ready to sell this huge house. Both the kids will be transferring to other colleges soon and this is to big of a house for just me. I am setting goals and will work at getting them done one project at a time.

    I will keep you in my prayers too.

    All Soul's Day was yesterday and I prayed for all of us who have been dealing with PSP in our lives. We need a cure for this awful disease! #curepsp

    Huge hug and God bless you too Bev.

    Keep posting!

    Nikkie

  • Hi Nikkie, when you talk about "his older children" do you mean, your stepchildren? I ask, as my Dad died 14 years ago, Cancer. His wife, my stepmother, didn't ask for help, didn't want the house to be touched. My sister and I, said at the time, we will help clear out his stuff, when you are ready. She has struggled with losing my Dad, so we didn't push. Didn't want to intrude in her grief. Although we are still in touch, she hasn't let us visit her for many years now. We have recently found out that she has moved and all Dads stuff as been got rid of.

    What I am trying to say is, when you are ready, ask them for their help. They might be feeling exactly the same as me, not knowing what to do for the best. I am heartbroken that I wasn't allowed to help sort out my father's things, even have a few precious things that meant something to me, but junk to anybody else. Guilty as well, as I should have pushed harder to get into the house, but she made it plain, we weren't wanted.

    Good idea to set goals and targets, but make sure they are realistic.

    Lots of love

    Heady

  • Sad story, Heady. I think these things happen a lot. We hold back because we don't want to get it wrong. Hindsight is a wonderful thing !! We all have regrets when we finally get the true picture. I always comfort myself by thinking that if we had done the opposite it could still have gone wrong and we'd still feel regrets.

    Thats got a bit complicated. Hope I've made myself clear.

    love, Jean x

  • Thanks Jean, I do understand and know where you are coming from. I am not beating myself up about it, too late now. Just wishing.....

    Lots of love

    Heady

  • Yes, my stepchildren and I love that advice Heady and one that I will definitely follow. My husband Les was such a good man to all of us and I know that he would want me to do exactly as you have said. This is a great reminder for me to keep them in mind until the end. There are also four grand babies from my step children and they all call me Grandma Nik.

    Thanks,

    Nikkie

  • PSPLIFE Jihns clothing needs have changed enormously . No longer the suited and booted or Even smart casual anymore sadly .

    .the parts others can see I try and keep as normal but still comfortable and easy to change .

    I found it made me sad looking at the clothes John could no longer use . Even if he could would be far too large for him so I decided to sort very gradually through them , I offered the new or nearly new to family andJohn was aware . He always like to give and he has very sensible head .

    I have very little left no only the clothes he no uses .

    I told myself it was ok because the would not fit anymore and if by some miracle ours soon go out and buy new ,

    In our case it was the right thing to do .

    I did a similar thing while my mum was in a nursing home , it made it so much easier for me when she finally left me .

  • I keep looking at Chris' suits. Like your John he has lots of nice clothes which don't apply to life now and wouldn't fit anyway.

    Getting rid of them is accepting reality but feels like giving up.

    I know it is the right thing to do.

    [ I have a long "to do " list ] I will add it.

    Jean x

  • Your not given in . It is accepting but it's doing something that's your own choice an in your own time

    I have Been moving on / accepting as he is now for thirteen years ,

    The house needs decorating but it's not going to happen it would all be too much so I just do the things I am able to get done.

    I should get a cleaner in but would have to clear some things out before I did.

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