Hi guys, I just wanted to talk for a minute, I’m scared, I’m worried, I don’t know how to do this next bit.
Colins is in the later stages, several times I have thought he is about to go, but then comes back again.
I have promised him he will be at home, I will be here with him. I am determined I will keep that promise, I know when he’s gone I will have no regrets.
But I’m scared, scared of the unknown, I have read so many peoples account of their loved ones last days, hours, all are different, so no doubt this part of our journey will be different aswell. Will I cope with it, will I do all the right things, will I make all the right decisions, when will I tell the kids, all these things go round in my head. Deep down I know things will be OK, but for now my whole life is on hold still waiting for this big event to happen, wanting it but not wanting it.
Thanks for listening perhaps I can get some sleep now.
Love and hugs to all xxxxxx Helen. Xxxx
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Oh Helen all you are going to sounds so familiar, it is just like I felt when George was still here, I knew the day would come when he left us, it was so very difficult, but you survive, after looking after a loved one with PSP, you can do anything you put your mind to. I kept George at home I also promised him I would, it was hard, but I kept him safe and he had his wish to die at home. The children will be there with you, helping you get through this, we are all here as well for you. Go to bed and sleep tomorrow is another hard PSP day. Big hugs Helen xxxxx. Yvonne xxxxx
Years of anxiety and anticipation of what is next take a toll. If you are with Colin when he dies he will be there one moment then he will be gone. It’s all rather sudden. It will be a relief on one level. That it is finally over. There will be grief and pain of loss. You are a strong person to have done this job. Colin is lucky you were in his life.
I too have been with my husband since we met when I was 15. I’m an only child so he’s been my history as well as my husband and partner in life. I’m not sure where he is in this journey either and I also promised myself to do all that I could to keep him at home. He’s physically strong but keeps having horrendous bouts with hallucinations. Between bouts he is “himself” albeit losing his speech, on a feeding tube and needing assistance with almost everything. I have no idea when the inevitable will happen and this makes it so difficult to let go. We Begin to do it many times, it seems, only to get a reprieve. And the professionals can’t really help us with this either. I’m so sorry for you and your husband and all of us on this horrific path.
I just related to your post on many levels and wanted to let you know.
You have travelled a long and difficult journey together it is completely normal to have these worries. Sadly we have no control over how things end but you have given so much and set everything you can up for your beloved to have his wish - you can do no more. I think your instinct s will kick in and you will cope just as you have with so much that has gone before. Do let your children know how you are feeling though - they would want to know and support you .
Just like Yvonne, I came here looking for answers when I felt my love was failing.
My only regret is that my love could not be at home when he died. It was impossible since our home was not redesigned as his illness progressed, and he was too sick to return home when he was discharged.
He was in hospital for 3 months. No-one could tell me how long he had, but suggested 12 months.
You have that 'gut feeling', as I did! Trust it - as it is probably a better guess than anyone else.
If you can, get additional help from Hospice/Palliative Care. Then you can just be Colin's wife again and not his carer. Live, laugh, love and reminisce!
I think my posts near the end may have references to the dying stages. It may sound macabre, but I found it comforting to be able to understand and recognize the process. It may be what you are looking for. I did not have a Hospice nurse to talk to when I needed her.
Talk to Colin and see if you can make a plan to see all the family in stages, or all of them over a day or two.
Let the family know.
My hubby did not want his friends to see him, but was happy to party with children and grandchildren.
We had our 50th wedding anniversary a few days before he died, and he made a great effort to take part. We had a cake and bubbles (lemonade) and chocolate - and that was enough! Then we watched rugby, but he sent me home as he was too tired to watch!
So tailor any event to his strengths and likes and make it work for him.
Yes! It is exhausting but you will get through and you will manage! Many of us here have - all in our own unique way!
The part you have been dreading is close. So plan, talk, prepare and relax! It will be clear to both of you, and you don't have to pretend any more.
You know the end is near. Enjoy every moment of every day! Make memories!
It's hard but you will come through, and, no, you won't have any regrets!
Helen, you are doing all you can by keeping him home with you. The danger for your mental well-being is to question whether you did enough or what more you can you do. You are not on trial. PSP is the culprit. Take care and keep well.
What you wrote is so true, doubts, concerns, worries. Just take each hour, each day as it comes. And as Jeff said, it can all be quite sudden at the end.
You have done wonderfully so far, and you will be fine no matter what happens in the future.
All these fears and anxieties are perfectly normal but can be overwhelming, especially in the wee small hours when they can be crushing. With lockdown and not seeing people it must be doubly hard for you. Please keep your children in the loop, they will want to know what’s happening and will want to be there for you and their dad every step of the way; they need you and you need them.
You have done everything you possibly can for Colin, he knows that. Now is the time to sit by his side as much as you are able, holding his hand, taking trips down memory lane, telling him how much you love him; tell him that you will be ok, we don’t always realize it but they are often worrying about us but unable to communicate it. When the time comes he will slip away, usually very peacefully; maybe at that moment you will be by his side, maybe not, but our final greatest gift of love to them is to let them go in the knowledge that we did everything we could to make their life as bearable as possible. Remember, you have come on a long and very difficult journey, a journey that friends and family never fully understand and you’ve done it your way, unconditionally and extremely well. Future decisions - well sometimes things fall into place as we would wish, sometimes things are out of our control but I hope that the journeys end, when it comes will be as you both wished for and that whilst grief is another long and painful journey you will have no regrets.
Dear Helen, I think you will sense when the end is near, I have been witness to the death of my Granny, Grandad, Mum, Dad and finally my dear Ben. They were all very different deaths but I think my Mum and Ben were very similar in that they were drifting in and out of consciousness and breathing patterns started to alter, stopping and starting you might say. They refuse drink or food and it’s just a matter of moistening their lips with a damp sponge/ flannel. I sensed about two days before that things were changing and was able to call my family who were there with us but I know I would have been fine on my own too. It’s not actually as scary as you may think and it seems most people with PSP have a peaceful death where you can be by their side offering words of love and comfort. I felt that it was a privilege to be there for him and hope that I have that support when my time comes. I hope you find this reassuring knowing that your instincts will kick in and you will cope with offering him a peaceful and loving death.
I was fortunate enough to keep my hubby at home until the end. He took 12 days from when he had his last meal until he passed. It was a long time, and was a testament to how strong he was. Luckily we had found a wonderful palliative care doctor some months earlier and she helped us immensely. Months before, she helped me ask him what he wanted at the end stages - what sort of medical help and interventions. He refused them all. In the end, she kept him comfortable and pain free, and we let him and nature dictate his final days. It was such a relief to know that I was carrying out his wishes and doing what he wanted. The doctor took care of his physical needs, and with the endless round of feeding, cleaning, etc. no longer needed, I was able to spend those last days lying with him and just 'being'. Friends and family came around to see him, although he was no longer conscious, and we all got our time to say goodbye. We sat around his bed talking and laughing and reminiscing. In the end, he had a peaceful death, for which I am so grateful. Trust yourself. You love him, and as long as all your decisions are made from that place, who can say what is right or wrong?
Strength to you, as you progress on this journey. Hugs!
Thank you, we have had endless chats about wants and needs near the end, so I know exactly what he wants, which is brilliant, he has even chosen the music for his funeral. I don’t think he is quite yet at the very end, even though there has been several times recently I thought he was, as Katie said I think I will know for sure when the time is here. Thank you for your words.
Dear Helen, I will always remember Steve’s final days. The district nurse popped in to do an INR test, took one look at him and said the end was very close. I was thinking he was near the end, but it was still a bit of a shock. It was Christmas Eve, my birthday! The following three days were the easiest part of the PSP journey, as far as caring was concerned. The DN arranged for carers to come in regularly. I had family all around, so I did none of the physical stuff. I just laid with him, cuddling in. As it was my birthday, then Christmas, plus a big house full of people, we did open the Champagne. I remember our two daughters, sitting on Steve’s bed, singing naughty rugby songs, that he had taught them in their youth. There was lots of laughter and many tears. I can honestly say, it was a privilege to experience. There was so much love around. It was calm, very peaceful. The nurses made sure he was always comfortable and pain free. I know it must be so frightening, thinking about what is to come, especially in today’s climate. This is one thing PSP does actually do very well, in all my time on here, most do pass very peacefully without pain. The experience has kept me going through all the dark days that followed. Of course I have regrets during our PSP journey, but nothing from those last few days. He died in our bed, my arms around him, our daughters with us, I told him I loved him and to let go. He breathed out and was gone. Perfect.
Please don’t be scared, just let nature take its course, let others do the hands on stuff, you hold his hand and tell him you love him. I would contact your doctors surgery or the hospice, if they are not involved at the moment. Don’t take no for an answer! If you can be bothered, I did write a long post, think I called it the final stage. I wrote it in the early hours of that Christmas morning, it might give you an insight to exactly what was going on in my head at the time.
My heart goes out to you, you can and will do this. I promise, any decision you have to make, will be the easiest of your life, there only is ever one answer.
Sending huge hug, much love and all the strength I can across the ether.
Thank you Anne, what a lovely answer, I’m in touch with hospice etc, not sure Colin is right at the end but it’s getting close, I keep thinking this is it and then he comes back kicking and fighting, but all the answers I’m getting are making me less afraid of what is to come, I will be ok and so will he.
Oh Helen I know just how you are feeling . We are going through the same seesawing of my husbands health issues . Twice now we’ve thought he was in his last days, then he’s rallied . I too have imagined I’d be relieved both for him and me , but of course I’ve no idea how I’ll feel .
We cope after a fashion, we carry on , but it’s wearing and depressing for all of us . I’ve been thinking about his funeral ... what do we do , who should come etc . It’s not nice to be thinking like that while he’s still alive .
Will he go on in this unhappy state for weeks, months, years ?
The not knowing is hard , but would the knowing be any easier ...?
When the time comes, even though we think we are prepared, it knocks us for six - for me it was complete disbelief even though I wanted his suffering to end, which in itself did bring relief. . It was one heck of a pot of emotions and still is. All I can say is try not to look too far ahead because the answers won’t be there. As for thinking about a funeral whilst he is still here, it’s good to at least have a mental plan whilst you can still get your thoughts straight because whilst it could be a long way down the line, it could equally be tomorrow, none of us know when our time will be regardless of our current health status.
Don’t think about the ‘not knowing’ - get what you can out of today and live it best you can - it’s so very hard, that I do know, but you’ve come this far - keep going.
Exactly will it go on for years, no one knows and no one can tell us and yes your right would it be better if we knew, but read all the answers I’ve had they are quite calming, so many have been through what we are going to, and they are here to tell their loving stories, they have calmed me down loads. Xxxx
Helen, I do so feel your concerns. I have checked my husband's breathing , to see if he is still living, several times a day for months, because with his weight now at 99 pounds, I know that the end of life cannot be far away. It is so hard, knowing that the end of life is coming, but not being able to make it right for him -- the right moment, the right way to leave peacefully, the right way for keeping his dignity, the right way to ease his fears and regrets. What I have found is that worrying...accomplishes very little that is useful. I have a plan for when his life ends, and that means his funeral, fulfillment of his wishes, who will help me out with the out of town guests and arrangements for them, and so on, but I am making peace with the knowledge that most of what I can do for him, I have already done. We've had 52 years of a good marriage, have been blessed with material blessings and many friendships, two wonderful daughters, a rich life of faith, travel and the best friendship between us that anyone could want --and the list goes on. My part of this conversation/chat that you sought is to suggest that you "let go" of your fears, feel the strength that comes from all you have shared together and let that be a strength for him, too.
You will be absolutely fine and stronger than you think you are when the time comes. My Steve was taken into hospital in the early hours of Boxing Day 2018 and he passed away in hospital in the early evening. We had wanted him to be at home but that just didn’t happen in the end but I had got him out of hospital and home in time for Christmas so it didn’t really matter, what mattered was that I was with him. It was quite peaceful in the end and there was a lot of love in the room. One thing that really helped me was telling him it was ok and that I would be ok it was something I read on here and it seemed to calm us both and really helped. Also everyone on here is amazing and we are all here for you. Take care and try not to worry as my motto is don’t worry about what you can’t change - it’s wasted energy.
Like you it was important for me, for Mum to die at home as she wished. I didn't know what I was letting myself in for and was worried and scared like you. Would I be able to cope, what would happen etc etc. As it was the last two days my husband & I spent with Mum were very special, Mum was peaceful, everyone that was involved in looking after her were people that she knew well and had a real affinity for. Her carers were so good and so caring.
Things that helped were having documented "Advanced Decision to Refuse Treatment" in place as well as a DNR. The Community Matron set this all up for us & though it was tough to have those discussions they were very worth while as it avoided at least one unnecessary hospital admission. I found Mum's own GPs were far more of the view, there is not anything to be gained by a hospital admission but the out of hours doctors were far keener on hospital treatment and this is where the ADR came in useful, so they knew it was Mum's decision not just me.
Other things that helped was getting end of life drugs prescribed before they were needed. This meant that at the time they were required (and not everybody does need them), the Community Matron could just come & administer them, there was no having to get a doctor in to prescribe them, get the prescription to the chemist & collect the drugs, not things you want to be doing when you just want to be with your loved one. The CM also made sure Mum saw her GP in those last couple of days, this meant that when Mum died the District Nurse could confirm the death, rather than having to wait for an out of hours doctor. Also if someone hasn't seen a GP in the last two weeks before death, then it is considered to be an unexpected death & an inquest is required and the police involved. Things which if you can avoid are best to. So I guess what I am saying is talk to whoever is supporting you, whether it's GP, CM or DN and let them know how you are feeling, they are there to keep your husband comfortable & to support you through this.
Finally please be open & honest with your children. My parents tried to shield me when my brother was very ill and it didn't help, I could sense something wasn't right and trying to keep it from me added to their stress. We agreed after that to be open and when he finally died we were able to support each other properly.
I hope you don't feel I've been too blunt but these were practical things that made things easier at the end. Thinking of you xxx
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MY HUSBAND JUST DIAGNOSED WITH PSP
Just when things looked ok!
Swallow test - passed with colors, just not flying colors
