The things I have learnt!

The things I have learnt!

Hi, well it's all over, the last person has left me. Now comes the hard bit, getting on with my life without Steve.

I am waiting for Mediquip, to come and collect all the equipment, it's pouring with rain, had a little cry, now I must start being positive.

The service was beautiful, as I had hoped. We had a huge crowd, not one walked out, dry eyed. His two young step daughters sang The Lords my Shepherd, one broke, so they stood there, hand in hand, whilst her sister carried on, until she was ready to join in, both crying, but still managing to sing beautifully. His grandson 11yrs old, sobbing quietly beside me, then stood up and lead the Lords Prayer, still crying. Then his final request, the Eagles, "Take it to the limit, one more time," blasting out around the Crem.

I know a few, have this day to come, very soon. Of course it's bloody hard, but PLEASE look up, take note of every little detail, it goes so fast and if you are not careful, a big blur.

The things I have learnt? I suppose my main message is look after yourself. Those last few days, I did not take part in one bit of Steve's personal care. I spent it, being his wife, loving him, snuggling up beside him in bed, telling him I loved him. It made it very special. In hindsight, that wonderful thing, I should have got others to take more of this responsibility off my shoulders, a long time ago. Spent more time, sitting and talking with him, not rushing around, in a mad whirl, trying to keep everything perfect, getting so, so tired, therefore, cross and being in total state of exhaustion, all the time. We all think, "nobody can look after their loved ones as well as me." That I have to say, is rubbish!!! 99% of Steve's carers, loved him and when I let them,(!!!!) could do everything, just as well as me, with the added bonus of a smile of their faces! The uniform of a Carer, takes away the embarrassment, that we all think, our loved ones suffer. This is my only regret, I tried to struggle, far too long, on my own.

The weeks, Steve had in respite, helped in giving me a break, which meant I was able to carry on, that extra bit longer. Of course I felt guilty at the beginning, but now, oh, it was such a benefit to us both. Still, I am receiving the added bonus's of it. I am use to being in the house on my own. I can go out with others, for a drink or a meal. I am able to walk into a supermarket and buy food just for me, without crying. I'm sure there will be moments, but not yet.

The hardest part of PSP? NOT now! I think it was more the middle bit, when his bladder stopped working, the constant clearing up of Urine. Falling. The long, slow loss of communication and the realisation, that PSP would win in the end. At the moment, it's still a huge relief that Steve is no longer suffering from this evil disease.

You all know, I shouted, screamed, kicked and hated PSP with a vengeance. Steve did get this full frontal. But I won't let myself feel guilty about this, I was just as much a victim of this illness as Steve. My only hope is, he understood.

I do feel very proud of myself, I looked after and cared for Steve until the end. Something every single one of you reading, has done, is doing and will do! Never, EVER doubt yourself, yes, you are tired, yes you are exhausted. The feeling of failure, is huge. We all feel that way, because, in the end, PSP does win. Its not because we are useless!

My legacy to Steve and the memory of PSP, I will survive, I will have another life.

I love you all very much, I can't say in words, what your posts have meant to me, in these last three weeks. As for all the support over the years,well.......... I won't be posting too much any more, but I will still read. If I can help any one, please message me. I will be thinking of you all.

Lots of love

Anne - Heady xxx

36 Replies

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  • Heady- Anne

    Services are over, you did a good job . Steves kids were able to participate and everyone left loving him a little bit more. You will be able to feel your feelings now....and act on them whenever you want. I am glad you feel proud of how well you did with him... You gave that same service to us in your sharing of your wisdom or emotions/you helped me to know I am not as alone as I feel, there's always Heady!

    It will be a little lonlier here at this site but PSP will continue to forge through and we will continue shout and scream and find answers and give answers.

    I wish for you a happy new life and I hope that you can come and visit. I'll miss you

    Thank you for all your words of wisdom ....

    AVB

  • Hi Anne, I can relate to nearly everything you said. I'm so pleased the service went as you had hoped and it was lovely the youngsters could take part and support each other.

    I agree with you, getting out and about while our loved ones are still with us does make it easier to do it when they are no longer here and I hope you have the opportunity to continue to be with friends regularly and do things you haven't been able to do over the past few years. I'm rarely in now and have just joined a walking group and have been invited to join them walking in The Gower, South Wales in September. I have two other holidays booked with different groups of friends.

    I'm thinking of you Anne as I found the first couple of weeks after the funeral the most difficult but it does get easier if you let it.

    Lots of love and a great big hug

    Bev - Nanna B

    ❤ XxxX

  • That is the most powerful message I have read on this site, EVER!!! Words to live by, no matter what the situation is, and very wise words.

    Although I am not a primary carer, I see the struggles and pain you have all gone through, and for theat I applaud you all, expecially you Heady as you kept it all together for your love, Steve.

    It will be sad not to hear from you, but you have to move on from PSP, you have to move on to a life for you.

    Cheers to you and Steve, cheers to the love you shared and cheers for what is to come.

    Hugs

    Paola

  • Anne you did a good job looking after Steve, he was at home until the end, is what I wish for George. You was always an inspiration to me, you were always there for us all, will sadly miss your posts, you helped me through hard times.

    So glad the funeral went well, and Steve had a good send off.

    Enjoy your time of not having to worry about bloody PSP anymore, and Steve is in a better place, and I am sure he would want you to get your life back.

    My thought of you heady was when you was in South Africa what the man at the restaurant said to you about how you looked after Steve.

    Big hugs to you Anne. Yvonne xxxx

  • Ann my deepest condolences to you , at the same time relieved and happy no more suffering Or fighting a losing battle for either if you

    you have every right to feel proud . I feel that constantly .

    you have had normal and then the Parkinsons normal , now you can go forward to your normal . I hope you can gently go forward remembering the earlier good times while making new memories.

    I have not been on the site as often as I was , I kept getting locked out .

    It's so sad though to see so many new people needing sites such as these. But they have all come to the right place for support .

    My best wishes to you Ann .Hugs Rita .

  • Lots of love from me Anne xx good luck in the rest of your life xx

  • Darling Anne

    I'm crying buckets!

    A beautiful photo and a beautiful post! Thank you for sharing and thank you for being you!

    Everything you say is so dam spot on!! You are an absolute angel and one that your Steve will have cherished!!

    My love to you darling Heady with bundles of love x

  • I'm also crying, something I do all the time now.

    Bravo, Heady and everyone here for having each other.

    Cuttercat

  • Heady - as always such moving, eloquent & sensible words! Thinking if you often & wishing you a bright, happy & peaceful future. We will miss you so very much X

  • Writing through the tears as I read your post. As always I will hold on to your words to show the way for me.

    You have always been there for the last 3 years. I will miss you. We are still in the middle stage you describe. We have always been a couple who bickered but didn't sulk and that still holds. We are lucky to have supportive children and friends, a good neurological nurse and the hospice but it is still a lonely road.

    So many of the " regulars " have died in the last couple of months. I feel drowned in tears.

    You deserve a new life, Anne, and I wish you happiness, with Steve in your heart.

    A big hug from Jean x

  • isnt' that the truth,Jean? Where is everyone? I am glad many have moved on, free of PSP but it stings they all went together leaving us blokes here to fend for ourselves....We all need to keep fighting the good fight...and one of these days it will be our turn to be free!

    AVB

  • Well, i'm just crying reading your beautiful words, you have been so strong and it's very hard to be strong, but, it's what we do, God bless. Xxx

  • I feel relieved for you that you the funeral is over and you can now begin to pick up the pieces and rejoin the real world, away from PSP. I thank you for all of your posts and the way you 'tell it like it is' and the way they helped to know that your thoughts and actions are a normal reaction to such a stressful way of life. I will be sorry not to read your posts but suspect that is just what I would do too, guess you want to get as far away from this disease as possible. I wish you well Anne and hope that you find happiness in your new life, you deserve it. Take good care of yourself and all best wishes for your future, I'm sure that is what Steve would want for you.

    Love Kate. xxx

  • I AGREE LOL JILL

    XXXXX

  • Thank you! May God bless you! Much love. Wanda

  • Bye bye, Anne. Live, love and laugh again. Take Steve with you in your heart and live for him too. Thanks, Sharon x

  • Thank you Heady..life goes on with or without you , so get on the ride and ride it for everything it's worth. As you know so very well life is to dam short.

    Dee in BC

  • Bless you and take care of you now xxx Big hugs xx

  • Wow, what a way to go! Rog wants Sympathy for the devil by the Stones to leave and Honkey Tonk women to enter the crem!, will have to be done.

    Your words echo so true to me, I think I remember you had a nursing background, this is my biggest problem as a nurse not allowing myself to be his wife , I will make it Steves legacy to allow the lovely carers we have to do more!

    The bereaved I have met from this illness all echo your words, but I think you will carry on supporting others !

    Enjoy this new phase of your life although sad.

    Keep in touch

    Julie x

  • A lovely photo heady. One to look at again and again. The funeral went as you both wished so you did everything right for as long as you could. You be proud of yourself now and go forward to a different life. You're a strong woman so you'll find your way with the help of time. Thank you for all your posts, some so funny and some teary. God bless you. Marie

  • Good luck Anne. All my love Maddy 🌞 Xx

  • Thanks Anne for all your wise words over the time we have been fighting the common foe. You gently told me off when I felt guilt for not doing everything for M. I am a week behind you trying to get the service M would like the vicar very supportive. At present I have no tears but they will come.

    Now you must rebuild your life and get back to being socially active. As the poet says look forward with eyes open and remember the good things you were blessed with together.

    Best wishes Tim

  • Thank you Tim. My only advise about next week is, take your time. Don't let anyone rush you. Make sure you look up, see who is there and enjoy the service, you are working so hard to get right at the moment. It's so very surreal and if you blink, it will be gone and you will have missed it. Honestly, I was dreading it, but we got across our love for Steve, therefore it was a huge comfort. I will be thinking of you, like everyone else on the site, hold your hand, as always.

    Sending big hug and much love

    Lots of love

    Anne

  • OI AGREE T

    ';LOL JILL]XXXXXX

  • Totally agree Heady. I did most of the caregiving to my Kim and would rarely accept help from others. I often wish I had spent more "snuggle time" versus just keeping up with everything else. It's been 6 months already and it still seems like yesterday she was with me. But then, I know she still is within my heart.

    Take care of yourself, dear friend.

    Love, Ketchupman

  • Thank you Ketchupman.

    Lots of love

    Heady

  • Thank you Anne, thank you!!

    Cuttercat

  • Your words, every single one of them, are so true. Take care sweetheart and good luck on the road to your new life.

    Of course the journey will start a little bit bumpy, but you will get there and deservedly too.

    Now I need a tissue to dry my eyes and blow my nose and once that is done to go hug my husband.

  • Wow... I am humbled. Such courage and strength in the face of adversity that we all know as PSP. When I joined this group it was with, and still is the understanding of what it is like to be a caregiver to a loved one living with this horrible disease... you all deserve a medal. Hopefully, I can take away some advice that may make me a better patient... don't know that I will be, but I'll try. Thank you Heady, and all of the other caregivers for giving voice to your experiences and keeping it real. Take the time now to reflect on, and cherish the happy memories you had with Steve.... move forward and be sure to enjoy a glass of wine or two. I think that it is an equally tough battle for the caregivers, as it is for the patient and never ever say if only....

    And oh yes... Great taste in music- Eagles- Take It To The Limit, it's on my service playlist.

    Tim xxx

  • Always such good advice . We will miss you. So glad Steve is free and he would want you to have another life. The best to you. Prayers and hugs will follow you.

  • Dear Heady ,

    I have just read your post several times ! Amazing!! Terribly sad but also uplifting!

    You have done a fantastic job in caring for Steve ...

    I shall miss you on this site Anne .. you have helped me so much to stay strong when I have been feeling so low !

    Love to you and take care xx

  • Hi. My mum lost her battle with PSP last April.

    I have been checking in every so often, and remember your name popping up with advice.

    Sorry to hear about your husband.

    You're right. It is a relief that they're not suffering any more.

    I didn't start properly grieving for 6 months!

    Take care Xxx

    Lindsey.

  • Anne. I can hardly type for the tears. You have been there for Steve and for us.

    You have shared your PSP journey, and helped me, and I am sure, others too, to understand and to deal with it. How hard a journey it is! Take care, be kind to yourself and don't be a stranger. Much love and thanks. Big hug. X

  • I AGREE R

    LOL JILL

    XXXXX

  • Good luck with everything,dear Heady and I thank you for all of your words of wisdom.

    You take very good care.

    Lots of love

    Denise x

  • Thank you, Anne (Heady), for what you've said and how you've helped me through your posts and responses to mine. I am sorry for the pain. I wish you all the best in your legacy to your beloved Steve of getting on and living another life.

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