What can I say? Your love and support, over the past few days has totally overwhelmed me.

Steve's last few days were very peaceful. He slowly drifted away. Boxing night, he started to show slight discomfort, so a shot of morphine was given. He never really was awake after that. A driver was attached on Tuesday morning. We spent the day, cuddling up to him at various times. He was in his own bed, so plenty of room for all of us. Early Wednesday morning, my sister popped her head around the door, to see how we were. Noticed then that his breathing had changed, my daughter came down and confirmed the end wasn't far off. So we got his daughter up and phoned his son. Five minutes later, after a few gasps, I told him to let go and that I loved him, he breathed out and was gone. Unfortunately, due to the hard frost that night, his son arrived a couple of minutes too late.

We all have to die, I would like to think that Steve got it as perfect as it could be. His daughter had to fly back to the States that day, his son due to leave for Scotland. So both got to say goodbye at the end. To see him at peace, in his own bed, after all the suffering of the past six years, is going to be a great comfort to all of us.

How am I now? Don't know is the truthful answer. Numb, tears have dried up. I have spent the last six years crying, perhaps there is no more left. No doubt tomorrow will hit me, have to start doing the official stuff. All I have managed to do so far, is sort the undertaker, arrange the date for the funeral and register the death. This has to be the only downside of dying this time of year, nobody is at work.

Tonight is the first time I have been on my own. I thought it would be worse, but thanks to Steve going regularly to respite, I am, sort of use to him not being here. I did get rid of all the crap equipment, straight away, it's all in a spare bedroom. I can cope with his personal stuff, but everything with PSP on the label, is out of sight. The car has to go next, but obviously got to sort the finances out first.

I am reading all the posts, sorry I haven't replied to any, but I am sure you all understand. The journey Steve and I have been on with PSP, has been hell. The one thing that I definitely got right, was that brave move, all those years ago, when Steve was first diagnosed, join this site. There is NO WAY I would have survived, without the love and advice from you guys. The knowledge I have, came from here, the strength to get up and carry on each day, you made me do that. AND that huge shoulder to cry on when things got really bad, well words can't describe. I would love to name everyone, but know I would forget someone, so forgive me, but I do have to name a few, that have been very special. NannaB, Easterncedar, Goldcap, Jzygirl, GeorgePa, Jimbo, Strelley, SABean, Debbieann, Rolley, the list goes on, with a special thanks to Peter Jones, who's non stop humour as got me through many a dark night.

I will run away as far from PSP as I can get, but I am not going to desert my friends and life savers. I will still be around.

One thing I would ask each of you to do, in Steve's memory and everybody else that lost their battle with PSP recently. Is take a step back, look at what you are actually doing for your loved one, not the things that you can't do. Realise, that yes, you are doing a brilliant job. Looking after a person 24/7 on your own, is extremely hard,,yet each day, both of you survive. Only one person is making that happen, that's YOU!!!!

I don't know what else I can say, except thank you from the bottom of my heart. It's been a privilege and honour to share all our journeys.

Lots of love


35 Replies

  • Dear Heady

    A very emotional read! Thank you for sharing. Thank you for being you and thank you for all the help and advice you have helped us all with!! Sending you masses of strength for the coming months! Goodbye Psp for you! I await that day 💋 X

  • Heady you have been an inspiration to us all, we have been on this long journey together, you have kept a lot of us going. Steve is in a better place, must be a relief to get rid of PSP the hateful illness. You looked after Steve so well, yes we all get upset, but we had each other to keep us sane, and help us get through each day.

    It was good to hear that Steve did not suffer, and he went peacefully with the people he loved around him.

    Anne it was a privilege to have you as a special friend and someone who was always there for us all, I have been thinking about you.

    Anne I hope all goes well for you, and that you manage to get some life back after PSP.

    Sending you a big hug, my good friend, please keep posting.

    Yvonne xxxxx

  • Amen Heady. I don't know how anyone copes without the support from all the lovely people here, definitely including you.

    Do you think you could tell us the date of the funeral so we can pray/send loving thoughts etc to you and your family at that time.

    Thinking of you often.

    ❤ XxxX

  • Wise and wonderful words as always. Sending love to you & yours X

  • Dear Heady,

    I wish I had known you sooner. Your support and kindness has helped me personally so much. Thank you, thank you. Life goes on for the carers. You have been a wonderful friend to have and yes this site has been a huge help. What you have written touched me to the core. How lucky you were to have family around you and with you. Your strength amazed me and I only hope I can be as strong. Love you Heady


  • Hi Heady, thanks for sharing that very intimate moment of Steve's final journey and your feelings, it was very moving. I just pray W will have a similar peaceful ending with family around in him in his own home.

    As for you dear Heady, just take each day as it comes, let tomorrow take care of itself. One step at a time, in your own time and in your own way.

    You have helped me so much and provided a lot of information to guide me through what may lie ahead of us which I am truly grateful for.

    I hope and pray that 2017 brings you joy and happiness. Please keep in touch as you are much needed here.

    Lots of love, Nanny857xx and big ((Hugs)) too.

  • Hi Heady, I am so sorry for your loss and hope that God will give you the strength to cope with all that needs to be done for Steve's funeral. I joined this group a few weeks ago and I am overwhelmed by the love and support everyone gives and receives. It's like being part of a large family group where everyone cares for each other. Heady Steve passed away knowing that he was loved and you have all the memories that you shared over the years. I join everyone in sending hugs and lots of love to you.


  • Thanks, Heady. You've been such a source of strength and wisdom for me all this time. I would love to meet you one day, but often think of Sammy's beautiful dream where all the folks here meet in the hereafter and circle up into a big hug and say well done! Til then, love and all the best, ec

  • Dear Heady - you are so very precious to us - sharing ups and downs - I may not have been on here regularly, as active as other people, but your stories have been a beacon, made me think, I shared them with my parents (this forum is too much for them - not so social media savvy on top of the daily struggles), as well as other practical and useful info other people have posted.

    And now that Steve has gone, time to breathe, reflect on what has been and what still lies ahead of you. I wish you peaceful happy days and hope you will visit here to tell us what you've been up to.

    Thank you xxx

  • So sorry for your loss but steve is at peace from this awful psp . Thinking of you and your family but hopefully you will be able to look after you now take care xxx

  • Heady thank for this very heartfelt post. Your sharing these last stages and how you wrapped your love in soft wool and loved him and cared for him until the very end will stay with me forever. You have given me the courage to face this inevitable end that we all face. You have such a way of expressing just how I often feel. My goal is to follow your example. God bless you and keep you and wipe away your tears.

  • Dear Heady (Ane)

    Your words as ever touching, caring and supportive of others at a time of deep personal loss. What a friend you are to so many. Your descroption of Steve's last days is a huge confort, that there can be a 'good death" after the horrors of PSP gives me hope andreassurance for when that time comes for us.

    Take care of yourself and I thank you for your wonderful support which I have found so very valuable.it has been a privilege to share a little of your journey.

    Love and hugs


  • Please accept my commiserations on your sad loss heady. Marie

  • Thank you for sharing, Anne. I am so glad that Steve had a peaceful end and all his loved ones were there.

    I agree with you that much of the grieving is gone through on the journey. The hard time is is grieving the loss pre-PSP - the Steve you would want back. You have so many wonderful memories I know.

    I know you will be alright. You are a strong woman and have acknowledged the strength you have gained these last years ! I hope you keep in touch here for those of us still travelling.

    lots of love, Jean x

  • Thank you for being brave and thoughtful enough to share your final hours with Steve with us. Your comments always give me food for thought and make me get up and go again. You can take comfort from the help you have give others and I wish you peace in the future

  • Xxx

  • Sending Love and hugs and strength your way

  • Thank you heady for your support , help and kind words through this journey - sending you lots of love and hugs - Sophie. Xx

  • Dear Heady,

    Thank you for sharing your post.. I am sending you lots of love right now .

    You have certainly been helping me over the months with your practical advice I don't know what I'd have done without you!

    Steve is in a much better place now and well most definitely! I am sending you lots of strength now for coming months . Will always be grateful for your kind words when I first wrote in this site about my lovely mum. Xxx

  • I feel lost for words Heady, so emotional - but with you in spirit and sending big hugs.


  • Huge hugs and love heady xxxx cope and grieve however you need to, we all do it differently xxx thinking of you and Steve

  • Hi Heady, firstly thanks for all the support, advise and words of wisdom you have given to us all on this site. Also for being totally honest about the strong emotions that we all have, not always helpful ones but nonetheless very real, it helps to know that these feelings are normal and understandable in the circumstances.

    I know that with NannaB the first thing her family helped her with was to remove all of the aids we all need of needed and get the house back to where is was before this wretched disease.

    I'm so glad that that the end was peaceful, that's what we all wish for I think, also that you had family there to support you, death can be a daunting thought but having loved ones with you makes a huge difference. I know because me and my 3 sisters were all with my Mum when she died and it was a privelidge to witness her pass peacefully away in a loving environment, not all wired up to machines trying to save you.

    I wish you well and hope that the funeral isn't to much of a trial, the wake is usually quite jolly, remembering the man and not the PSP. Take good care of yourself Heady and get plenty of rest to rechage your batteries ready for the next phase in your life.

    Love and hugs

    Kate xxxx




  • Hi heady

    So much positivity in your post, crying again but realise that is OK whenever wherever! Celebrate his life, the only certainty with this journey is the outcome.

    Much love and peace

    Julie x

  • Thank you Heady for you! You have been an inspiration for me, with you candor and your humor. Please take care of yourself, take time to heal. It's hard when you've been a caregiver for so long, not to be one! Thank you for everything. Steve is in good hands, so enjoy the peace this new journey of your life will bring.


  • Very graciously said. Hold your head up high... you deserve it. Grieve in whatever way that makes you feel better. Many thanks for all the support and advice you have shared with everyone here. xx

  • Dear Anne. You said it all - beautifully, thank you. I'm useless with words but my thoughts are with all here on this site. Anne I wish you all the best for the future. The legal stuff will take some time, there is help available from the probate office and other offices you will be dealing with. Just ignore the useless and unhelpful ones, you never need them again. You have now reached the end of that dark tunnel, enjoy the sunshine. Lots of love maddy x

  • I sit here reading your post and almost feel selfish for ranting, I have never been the sole carer for my mother in law, we have had a lot of help. YOU and many others do this on your own and have done so for many years. My hat goes off to you all you are the warriors.

    Heady, you are an incredible person. Thank you for opening your heart, your life and Steve's journey with us all.

    He must have been one incredible man to have someone like you in his life till the end.

    Bless you for your courage, your strength and your heart.


  • Dear Heady, as usual your posts are wonderful and helpful. They have always been for me a foretelling of what I have ahead. For all of us the grieving is a long slow process as we lose our loved one gradually, bit by bit, over years.

    I assume when the life is finally over one of the biggest losses is the daily routine of caring. What to do with all that time? The re-invention of a life to call your own.

    Thank you for your honesty, insight and wisdom. Steve was a lucky man! Good luck with your new life. Keep us posted.


  • Thank you once again for your loving thoughts. We are so grateful for you and how you have helped and continue to help each and every one of us.


  • Dearest Heady, so sorry to hear of Steve's passing, but glad that you were able to spend it with him and that he passed peacefully. Hearing of your and NannaB's recent bereavements really has hit me hard, as the 2 of you, plus EasternCedar, have been (in my mind) some of the steadfast cornerstones of this group. Each of you, in your own ways, have taken the time to reach out and check up on me from time to time, despite all you had to deal with yourselves, and I am so incredibly grateful for that. Your grace, dignity, strength and good humour, through what you rightly describe as hell, has been an example to me. Thank you for all you have contributed to this group. You should be incredibly proud of yourself and the amazing job you did for so long. I wish you peace as you venture forward into another part of your life. I hope we will be able to keep in touch, and perhaps to meet up one day.

    Hugs! Sawa xxx

  • Thankyou for sharing everything with us all.You must be so exhausted.You can rest now.Glad Steve had his family with him.Remember what an amazing job you have done the last 6 years.We are all on a major roller coaster and just keep going.Now its time for you to relax xxx

  • So very sorry to hear of Steve's passing, but a peaceful end was all that could be wished for to bring the hideous PSP experience to a close. Thank you for all your valuable advice, the information given here has brought much comfort to me over the years. It's catch 22 really, I almost don't want to know what is likely to happen, but at least having read everyone's experiences nothing is a surprise which makes coping an awful lot easier.

    Grieving for the people we have lost has been an ongoing thing for many years, almost making the end a relief I suspect, but not having someone to care for, however difficult life has been, will not be easy. I hope you will find the comfort you need from your family & friends & that slowly some kind of normality will return.

    We will all be thinking of you xx

  • Heady, while I have only been on this site a short while, I have come to admire and respect your wisdom and outlook towards this awful disease. Yours is the voice of comfort, and you have touched many through your writings. I will be lifting you up in prayer in the days and weeks to come.

  • I've not been online for quite a few week and only just seen your posts re your beloved Steve final journey.

    Sending you massive love, hugs and peace.

    Your words have eased my mind about what the final days may be like and I pray Mum does have her wish and is able to remain at home to leave this earth.


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