Really want to help counsel someone with PSP. Any tips from anyone would be so useful. Has anyone had counselling and what helped most in terms of helping with the emotional trauma of living with the condition and the way to deal with the prognosis.
So far I think I have definitely helped but am really keen to ensure I am a positive help rather than just spouting words that are not at all helpful.
Giving counselling to someone with a condition that does not have the best of outcomes is new territory for me, although I have had many, many years of counselling those with stress and anxiety, I am just wanting to ensure I am a help and not a hindrance!
I would be really grateful for any advice anyone may have.
Thank you.
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JazzyOne2One
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You pose a really tough question, and maybe one that is best answered by a professional with experience in this regard. Most people on this forum, like me, are just ordinary people who have been confronted with this terrible diagnosis; either for our loved ones or ourselves.
It might be helpful to know what role you are playing in the PSP Warrior's life? Are you involved professionally, or is this someone you are helping that you know personally in an unofficial capacity?
I remember my husband's absolute grief and despair when he first received his diagnosis. I was the one who leapt onto the internet to find out everything I could. I don't think he ever did, and we never discussed the prognosis directly, but he figured it out over time. I remember heartbreaking conversations early on when he would tell me he was going to get better. I never had the heart to tell him otherwise, but supported him as much as I could.
It's a terrible diagnosis, and the journey is very tough. And yet, there is joy to be found within that journey and quality of life for some years. I know there was a lot of introspection on his part to come to terms with his diagnosis. He had 1 or 2 counselling sessions, but didn't want to continue the sessions. The most important comfort that my husband needed was to know that I was going to stick with him. It was an easy promise to make, and I also assured him that I would keep him at home for as long as possible, and only consider other options if/when it became unsafe for him/us. That promise definitely marked a change - he became more accepting and a lot calmer overall.
So, in answer to your question, while I think that personal counselling is important and can be helpful, I think that any counselling regarding PSP should perhaps involve the entire support structure and not just the PSP sufferer themselves. This journey 'takes a village', and it demands as much from the carer(s) as it does the patient.
Hi SavvaThank you so much for this. I know I could speak to ‘professionals’ who have experience with counselling people with such conditions but I’m trying to get information direct from those who may have had counselling. I’m not arrogant enough to think I can get it right by winging it, although I am very intuitive and generally am able to adapt to an individuals needs fairly quickly, I think sometimes people forget to go to those who matter if you know what I mean. Some brief tips would be useful that’s all.
I think my role is really important to get right and so this is one of many avenues I am researching.
I rarely come on the site these days but look in occasionally.
I just wanted to say what a great, well written response to Jazzy, a response that could be a page from my own story.
I’ve replied also to Jazzy just reiterating how important it is for not only the carer but the wider audience to get support on this sometimes impossible journey. I know from my own experience that my husband became invisible and so did I because family and friends just didn’t know how to interact with us as things changed over time and once he lost the ability to communicate many of them ran for cover.
Anyway, 3 years post losing my husband to PSP life goes on, it will never be the same but it trundles on and I feel that I am keeping up with it. I did learn a lot on the way, especially compassion and patience. I said to Jazzy, none of us are hero’s, just a bunch of people giving the best care for our loved ones against the odds, with minimal support.
Thanks for taking the time out to acknowledge my post.
I've read through your other posts below and I'm sure so many of the carers (current and past) will know exactly what you're saying. I am incredibly blessed to have a big extended family who always took the time to include my husband and continue to interact with him until well into his illness. Every single one would always take the time to come and greet him, sit with him for a short time and have a little chat. They were also a huge comfort to me, always available to listen when I needed to vent, and also to just create a space for us when we needed it. I remember my cousin inviting us over, and then making a picnic bed outside for us under the trees, and encouraging us to just lie down, relax and sleep. Such a simple thing, but it meant so much at the time, and still does now. Unfortunately the friends didn't hang around too long, and I very quickly figured out who to count on, and who I just cut out and moved on. I know that I definitely couldn't have done what I needed to for my hubby without all of those people surrounding me with their love and support. And that includes all the amazing people on this forum!
This can be an incredibly lonely and isolating journey, and what I don't think people realise is the extent to which the sufferer relies on their caregiver for absolutely everything - physical care, emotional comfort, medical intervention and advocacy, the list goes on! So one of the best ways to support the PSP sufferer is to support their primary caregiver and supporter. If the PSP sufferer 'falls', their caregiver is there to help them. But if the carer had to 'fall', it would spell disaster for that PSP sufferer.
Be gentle and kind to yourself. It's the least we owe ourselves now.
So pleased you were blessed with such wonderful support - the story about what your cousin did is heartwarming and those are the very moments that you never forget.
You are so right, caring can be the loneliest, most isolating journey you will ever take, your life is completely turned upside down - anxiety, fear for the future, guilt, exhaustion lurk around every corner. Then of course friends come in and tell you how well you are doing and how good you look. What they don’t know is that you’ve been up half the night cleaning up ‘accidents’ and then have started the day doing everything for your husband, including cleaning his teeth and just about everything in between that he is unable to do for himself. I had one friend who said to me “you do too much for him” - needless to say she was struck off the Christmas card list.
I’m doing ok now, life will never be the same but I get a lot of enjoyment out of the things I like doing - life is far too short not to make the most of it.
We were fortunate in that we got my husband's diagnosis fairly quickly and that our GP at the time and senior District Nurse had previous experience of PSP.
It was 2015, the year before our Golden Wedding, and we both said to each other that it wouldn't break us. Sadly it nearly did. My husband was very calm and stoical and took each day as it came. He wanted to stay at home, but I couldn't promise this as I didn't know if it would be possible. With some modifications to the house, the help of my current GP, who is brilliant, our wonderful District Nurses and a loving team of carers he died peacefully in his own home Christmas 2019.
We then went into the pandemic, lockdowns etc. and I crumbled and by Spring 2021 I saw my GP and started counselling as my GP thought I had PTSD following all that we had been through.
I'm the sort if person who keeps battling on, my motto being keep on keeping on, but I couldn't, I had nothing left either to battle for nor had I anything left in the tank to battle with.
So yes, I sought help and now I'm back, possibly not as strong as I was, but perhaps that's no bad thing.
I think it us really up to you as an individual but there's no shame in seeking help no matter what age you are.
Hi thereThank you so much for this reply. This is so helpful as it brilliantly demonstrates the toll it takes on the family. Sometimes this is forgotten.
You say you may be back but not as strong as you were but I think you are back stronger than you were. You have been through the most traumatic of times and yet you are still standing and you can still smell the grass and the flowers and can still appreciate things of joy but now you can experience that with the added strength of having survived something horrendous in terms of your emotional and mental well-being.
I take my hat off to you, you are amazing. Keep smelling the flowers 💐 and thank you so much for sharing.
I agree with my two friends above. This is a long journey and many people are needed to help you along the way. You don’t say if it is a loved one that needs your help, it would help if we knew, so the right people can chip in.This place is a good place to start. Everyone on here has had personal experience of PSP, mostly carers, although there are some that have this evil disease, which helps keep us carers on the right track.
I did have counselling, it helped me come to terms with the anger I was feeling and the knowledge that my husband was dying.
My main advise is concentrate on what can be done today, not what is already lost or what is coming tomorrow. Ask any question, express any feeling. You won’t be able to shock any of us, we have all been there and felt every moment of anger, guilt, rage and sorrow that PSP brings with it. Most of all remember, two people have PSP, the patient has the symptoms, but it’s the carer that has to suffer them!
Hi AnneI did say at the very beginning that I am a Counsellor who has no experience of counselling for this condition. I was wanting to find out from the front line what helped and what didn’t help. I am already doing the things you say but I was interested in getting first hand experiences.
Dear Jazzy . . . it might be early days as yet but my brother was helped and supported by an end of life duala . . . this is a tough journey to feel one's way through with another xx
I don’t come on to the forum much at all these days. My husband died 3 years ago from PSP, I cared for him for 7 years, 7 extremely difficult years. To this day I have no idea how I got through it, I guess love conquers all.
What I am going to say to you I say with the greatest respect for your desire to support someone navigating the rocky road of this hideous disease. How much do you know about PSP. Am I right in assuming that you have someone close who has been through it giving you some experience of the day to day challenges? It’s a very complex disease, there’s not a one size fits all regarding symptoms and length of survival. It chips away at the sufferer bit by bit until they are a shell of who they once were. It chips away at the carer bit by bit until they don’t know who they are anymore, seemingly locked away from the rest of the world in a bubble.
It doesn’t make us stronger because we got through it - from my perspective I cared for the person who I loved so much and I honoured my wedding vows. It was an honour for me to care for the person who had made my life so complete. The life you have to adapt to becomes the new normal. Now he is gone I am still trying to find out where I fit into the world as a huge part of what was me has gone. No, I did not come out of the experience stronger but I know life has to go on so I am getting on with it and 2 gorgeous little granddaughters have given me strength and the will to experience the new joys they bring to my life. Even the little birds queuing patiently around the bird bath for a splash make my day. There’s joy all around us it’s just that we don’t always take time to notice it.
The folks on this site are the counsellors. They have lived the disease as carers or sufferers, and I think it’s fair to say have a heck of a lot more knowledge about it than the medical profession. Some GP’s will never see this rare disease in their practice throughout their working life. The advice the warriors on this forum are able to give each other is straight from their own experience - you have to live it to understand it, it’s a rare disease that is little understood. This is an incredible forum where veterans are of great support to newcomers with advice and information that is hard to find away from the site. There’s nothing more powerful than being ‘in the same boat’.
My husband would not have benefited from counselling as he was not diagnosed until 4 years into the disease by which time his cognition was pretty much wrecked along with his ability to process information. In lucid moments he would pick up something in a conversation and completely misconstrue what was said leaving him distressed.
The best therapy for my husband was to know that he was loved and to be included even when he couldn’t participate. Sufferers and carers of folks with these diseases can become invisible to others, sometimes by friends of many years, who just don’t know how to deal with it. Both sufferers and carers need regular support, someone to just sit and have a coffee with and chat about anything other than PSP, or for the sufferer, a friend to sit and talk about old times or current events, even when it’s often a one way conversation. Believe me, my husband was still in there even when he lost the ability join in a conversation.
I think what I am saying is that I wouldn’t feel equipped to counsel a friend who has lost a child because how could I possibly know what that feels like. I can be a supportive friend though, they don’t need to hear my words of wisdom, I just need to be there when they want me and stay away when they need space. I can talk with experience though to someone who has dealt or is dealing with the hideous PSP because I have lived it.
I remember as it were yesterday taking my husbands hands when he was sobbing and asking him what was upsetting him. His words were “I don’t want to leave you on your own.” In that moment I promised him I would be ok (famous last words) and that was the only words he needed to hear to give him peace. He never mentioned it again. My heart broke into pieces in that moment but it was equally a good moment for me that I’d been able to lessen his anxiety.
You are doing a valuable job with your counselling for people with stress and anxiety but as you said yourself you have to get it right. I know from my own experience the well meant words from friends who just didn’t have a clue and how much more stress that put on me. How many times was I told “you are doing a great job” when they had not got a clue nor did they ask what life for a PSP carer or indeed sufferer was really like behind the scenes.
To conclude, and indeed to end my ramblings, this is just from my own perspective and in no way meant as a criticism towards you or indeed counselling generally, which has proved to be a life saver for so many. I wish you all the best in your supportive work.
Thank you so much for your amazing insight. Despite what you say I can categorically say that you have become stronger having coped and supported your husband through the trauma of PSP. Indeed I have no idea of exactly what you went through but you must not put yourself down. To stay sane is incredibly difficult when you are fighting your way through some dreadfully complicated and upsetting times. It is the most horrendous thing to watch someone you love suffer. I know what that feels like. How you cope is a guessing game most of the time and you can often feel like you are drowning but there is no way you would give up supporting.
What I have found out is that sufferers of PSP feel ignored in the earlier stages as their speech becomes slower as people talk over them as if they don’t exist and this really really upsets and frustrates them. I’m trying to work with the sufferer to help them regain control and retain a sense of self. Helping with some here and now positive thinking rather than living in a future that holds nothing but terror for them. Helping them smell the flowers and feel the sun and find anything they can that gives them pleasure.
This will never, unfortunately, halt the progress of the disease but it will help them not waste a moment of time on negative and fearful thoughts. I don’t profess to have a magic wand that will change the outcome but give them the tools to grab as many positives as possible out of every day. At this point my focus is on the sufferer, not the carer. It isn’t easy but if joy can be found anywhere at any time then it must be taken and viewed as a jewel of time.
It’s working with the person I am supporting at the moment for which I am so grateful.
Your job now is to recognise how amazing you were in supporting the person you loved and now concentrate on living your life looking for the sun, flowers and love that is all around you. He would be so massively proud of you for doing that.
Thank you again so much for sharing. I feel honoured to have heard your story.
Take care of yourself and try to find the joy that is there for the taking. Don’t waste a precious moment.
I hope you don’t mind this content as it is said with all good intentions.
You cope because you have to - there’s no other choice. You only have to read the posts on the forum to quickly understand that getting the right help can be a post code lottery and the stories from people who have failed to get Continuing Healthcare (CHC) or any kind of help for their loved ones, despite the fact they are undoubtedly entitled to it, is a national disgrace. This doesn’t just apply to PSP but all the life limiting illnesses where carers are often abandoned to get on with it.
I completely appreciate that you are trying to help the sufferer who has become invisible BUT unless the wider audience are brought into this then it defeats the issue. I know what that did to my husband - he was not only confused by it but deeply upset when friends of many years could not talk to him. I remember so well friends coming for dinner and my girlfriend coming out to the kitchen and saying her husband found it too difficult to have one way conversations with my husband. I remember my exact words to her expressed strangely calmly. They were “well maybe it’s time that your husband stopped making this about himself and thanks his lucky stars that he’s not the one being eaten away by this wicked illness.” Things changed after that - I hated shaming them but it was the only way. So what I am saying is that the wider family/friends need to learn how to interact with the person who has lost communication. Like my husband, many sufferers have lost cognition before diagnosis so as I said before, counselling would have been lost on him. I can’t stress enough how important it is for carers and their family to get the support, they too are invisible. If a person has cancer there’s incredible support out there but not for these rare diseases. Most people will not have heard of PSP, the symptoms of which are devastating.
I will never look at myself as amazing. All I did was give something back, albeit against the most challenging circumstances, to a man who gave me so much in his well years and I’m glad I was able to do that, it has helped no end in the grieving process. PSP is a hideous illness and there are no hero’s - just a lot of people who survived against the odds, who dug deep to tap into their resilience to help them survive to take the best care of their loved one. I have to disagree with you, I am not strong but what I learned from the experience was compassion, patience and forgiveness for the people who abandoned us.
Please do think about support for carers because as I said before they too are invisible and if they don’t survive mentally then who looks after the sufferer. I think you’ll find that the majority of carers on here do try to bring as much joy into the lives of their loved ones as possible, pulling out all the stops to make life as comfortable and anxiety free as possible for them. There are some pretty heartwarming stories on the forum, I don’t know some of these folks personally but I have a heck of lot of respect for them.
I really didn’t mind the content of your reply at all, we are both speaking from our own perspective and for me from the actual experience, you have to live it to understand it.
Absolutely. I understand and agree about all you have said but I’m not superwoman! I cannot possibly be expected to cover the world at the same time. My focus is on the sufferer totally. Whilst I appreciate what you say I cannot take the responsibility for the carers too. As individuals if they ask for my help I will give it but I would have to live with the family to encompass the whole story and I am sorry I cannot do that.
It’s fine if you don’t want to accept any praise or recognition for what you have done but I am positive that your husband would want you to.
I simply want to do the very best I can for the person in front of me. That’s all.
From your response, Jazzy, I can see that you are not understanding what I am saying. I have not suggested you be superwoman. PSP impacts the sufferer and carer equally and counselling can only work if both are taken into the equation. This is just another example of the carer being invisible. I see no reason why counselling could not be done for both carer and sufferer at the same time, a bit like marriage counselling.
Anyway, let’s leave it there, maybe one day us carers will be heard.
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