Colin passed away this morning, 8 days on the syringe driver with no food and drink, watching him literally fade away from me.I feel very lost, after all this time caring for him, never really believing it would happen. Struggling to believe he’s really gone.
I know I will get through in the end, but 50 years together, I was only 15 years when we meet, don’t know what or how I’m meant to do the next few weeks.
Thank you everybody for your love and support.
Love and hugs xxHelenxx
So sorry for your loss, Helen.
It has been a long wait for Colin to be finally at peace. And he is now!
Yes. You will feel numb and not know what to do - but yet have a list a mile long and dont know where to start.
Take some deep breaths, and relax. Cry if you feel like it, although I expect there will also be relief. It will be very strange for a while, but you will have family around you. Sleep, reminisce and lean into the quiet. Colin will be watching over you. You have done him proud.
Big hugs
Jen XXX
Deepest condolences, Helen. Thinking of you as it all sinks in.
thank you xxxx
hello Helen, I lost my beautiful husband Tom on the 26th of September. Like you, caring for him for many years not believing it will never end. Tom Was also on a syringe driver and and had stopped eating and drinking. We have been together for 47 years and like you, I had no vision of life without him particularly as carers we displace our own life for so long that we barely know how to pick up where we left off. I found that people staying with me for the first week or so helped hugely. Some bereavement counselling helps as well as being so busy Sorting out paperwork and re-organising the house, returning equipment and so on. One day at a time is good, expect to feel waves of grief but also periods of calmness and normality. Although the future is different I found that not overthinking what it might look like is helpful. Keep talking to people, friends relatives make a point of making phone calls and if possible meeting for teas and coffees. Talk about anything it’s very normalising. I wish you the very best.
My sincere condolences to you Helen. Say to yourself thatColin is now in a better place. Sending you big hugs. X
Sending love and hugs to you Helen at this difficult time.
My dad passed away nearly 8 weeks ago in similar circumstances from PSP. He's left a huge hole in our lives - he and my Mum were together over 50 years too.
I'm somewhat comforted knowing that, like you, we cared for him as he would have wanted right up until the end and he wasn't in any pain. I hope in time you can take some small comfort in that.
Be kind to yourself and try focus on getting the rest that you will be in great need of,
Lxx
thank you xxx
Sending love your way, Helen. Red6875 is our daughter but I just wanted to share how I am, 9 weeks down the line. Right up until the funeral, which I was dreading, I felt numb, empty, unreal and both physically and emotionally exhausted. I kept frequently breaking into overwhelming crying and panic attacks although my daughter and I had been very much aware of suffering from anticipatory grief for the past few years. I was relieved that Paul was free from the absolute horror of PSP but I just missed him ( still do ) so much. Now I’m feeling a bit calmer and stronger but still purposeless, having to stop thinking in the mindset of a carer but as a single woman, living alone….something which I have never experienced before.
It really is a question of just taking each day at a time, building up one’s health again and for me, only seeing and talking to those people who have stood by me and can totally empathise with what I’ve gone through and have lost.
There is no right or wrong way to grieve or stages to work through. Stop people if they start to give you “ unhelpful advice,” in requested.
I do hope I haven’t talked too much here! This coming Thursday would have been my husband’s 80 th birthday and it’s 2 months since his death. It’ll be a hard day but it’ll be fine to feel extra sad.
Do take good, good care of yourself and be proud of how you proved your real, true love right up to the end.
Susanne xx
thank you so muchxxxc
Bless you
Unfortunately it’s something every one of us who has a loved one suffering this awful illness is going to have to go through in the near future
Try to remember all the happy times you shared when your feeling sad and lonely
your so right xxxthank you xx
so sorry for your loss I lost hubby 10 months ago and know how you feel I had known him since I wa 14 years old married for nearly 54 years You will get through this knowing he is no longer suffering and having wonderful memories .Be kind to yourself surround yourself with family Big hugs x
Oh Helen, my heart goes out to you. Your post will be so familiar to many of us. PSP is so cruel.
I too felt numb and bereft and looking back I don't know how I coped or possibly not!
Take heart that Colin is no longer suffering and is at peace.
Sending gentle hugs and love from Gloucestershire.
Anne x
thank you xx
So sorry for the loss of your husband! Wishing for peace and strength for you and your family! One day at a time.
So sorry Helen, I hope you can take comfort from the fact that you did everything you could for him. Take care of yourself now and be kind and gentle to yourself. xxx
Dear Helen, I know how you are feeling. My wife Carolyn passed away at home 6 months ago after living with fFTD/PSP for 12 years - she just faded away after not eating for 2 weeks. I still can't come to terms that she has gone, after 55 years together. I still cry every day and the loneliness and the empty house is so difficult. Keep family and friends close when you are on your own. Reach out to them, rather than waiting for someone to call you. Depending on how you are feeling, reach out for professional grief support if needed. I've started seeing a NHS psychotherapist due to the trauma and anxiety of losing my wife.
Lots of hugs xxx
So very sorry for your loss, Helen. Love doesn't die, it's why we grieve. You don't get over love. Loving Colin and being loved in return leaves an indelible mark on your heart❤. His passing will feel surreal, and there is much to be done. Avoid creating distractions and do not turn away from your grief or ignore it. It follows you.
Hugs and prayers,
Tim
So sorry for your loss. Please be at peace knowing he is released from his suffering. That thought continues to sustain and comfort me almost 18 months after my husband's passing. A big hug, Purrlie
My condolences, Helen. Thanks for reporting in. It helps us all.
My sincere condolences Helen. I can understand how you must be feeling having gone through the same. It’s okay to grieve in whichever way suits you, there is no wrong or right way, just take one day at a time. You will feel a big hole in your life right now because so much of your time has been taken up caring for Colin. You were strong then and you will be strong again. Take comfort that Colin left this world knowing that he was loved and he is now whole again, free from this cruel disease and resting in peace. Remember him as the man he used to be and the happy times you shared together. My heart goes out to you, but please reach out to friends and family. When offers come to meet, take them up, it does help believe me.
Sending you all my love
Marion xx
I am so sorry to hear about your husband's death. You must go through the grieving process in your own time..I hope you will allow others to comfort you like a warm old quilt whose patches each hold a wonderful memory for you
I send love,prayers and tight hugs to you 🤗
So sad, i am watching my husband fade
I’m so sorry to hear this. My husband began fading at the beginning of August and died on the 13th, calm, sleeping, painfree without medication. You must focus now on being his wife again, talking to him, reminiscing , telling him he is greatly loved. And most of all, hugging him. Touch was so important those last few days. I very much regret not having lain quietly next to him at that time but he was in a hospital bed in our living room with a carer always near him and it made me feel very self conscious. Big regret.
Look after yourself and make sure you eat and rest. Susanne xx
thank you xx
So sorry for your loss. Hopefully in time the pain will lessen.
Helen,
So sorry for your loss. You have done so well over the past years. No one could have been a better carer.
Richard x
Sending you lots of love ❤ so sorry for your loss. Be very kind to yourself.
Helen,
I am truly sorry for your loss. Two things you said that really resonated with me: The first was that you were 15 when you met...My wife and I were 14 and 15 when we started dating. And second was that you feel very lost, after all this time caring for him and never really believing it would happen. I can so relate to this. My wife has been diagnosed with PSP for over 5 years now, and we had 5 years from onset to diagnosis prior to that. The disease is so slow, but also, so unrelenting. I have days were I feel she will live for many more years, and then she has a fall or wakes up in a semi-sleep state from a night terror and can't even speak, Then I run the tape in my head on what is to come and I know how devastated I will be when this all plays out. She has been such a big part of my life for so long that when she is gone, I will be like a hole in a donut.
Keep your family and friends close and keep moving. The best answer to grief is motion, especially when you don't want to move.
Hugs to you and your Family.
Warm Regards, Dick
thank you Dick, I got like your feeling a few years ago, made me very down. I changed my way of thinking and started only thinking about today and wiping any thoughts of tomorrow. Although that caused me a few problems like missing appointments and other arrangements in the beginning, then I I would make sure everything was written on a calandra., that solved the problem, I just had to deal with that day. Good luck in your journey, love and hugs Helen xxx
So sorry to hear this. Love and hugs to you.
thank you xxx
sending you lots of love xxx
thank you xxx
The End
this is "gonnaMissDaddy", he's gone, he's really gone
Lovely husband gone but not forgotten 
My wonderful husband 
