PSP Carer Survivor Forum?

Hi Folks

I am very good at getting bad ideas.

When we loose our loved one the forum becomes, perhaps, less relevant except for the warmth and friendship we may have found here.

Now it might be that it is time to walk away from the pain and memories of the PSP issues and start to write the next chapter of our lives.

However the loss of our loved one brings with it other issues to face. Some, I know , have tried Bereavement Forums, but they have had to start afresh in a new community.

Would it work if those in this situation continued here? Maybe if we mark posts on loss, bereavement and recovery with something like 'Post PSP' and then the title? Anyone could post on this subject, but it would make that space for this area.

It would give us a chance to continue to support and share with them and it gives them the chance to share with us how to manage and cope with the time we have yet to face when we loose our loved one.

I have had a number of PM chats with folk in this situation and they have taught me a lot. It is not a one way street.

Or, we just continue as we are...

Thoughts?

Warmly to all

Kevin

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  • Hi Kevin,. You are right, it would be lovely to have that sort of place to go. I read every day, I even reply, some I actually press "send", others I cancel. My advise, most of the time, I don't think people would want to read. Equally, I can't say goodbye. Who else in this world, knows what I have been through. I have tried the Bereavement Forum, but how can I relate to a Mum that has lost her son in a car crash, or a husband who's wife has taken too many sleeping pills. It's so hard to express what I have gone through, with others I meet. I belong to a widows group, we all have sad tales to tell, they look at me in awe, when I tell them how long I cared for Steve and I just can't imagine the horror, to watch your husband to collapse and die in front of you, with no warning.

    So yes, you have a wonderful idea, but please don't join it, any time soon. I know life is tough now, but it's only the dress rehearsal for later!

    Sending big hug and much love

    Lots of love

    Anne

  • Hi Anne

    Gosh, that's so much for people to go through!

    Y'know you've always been good at not giving advice, but talking about your experiences and what you have learned. We have found your posts incredibly valuable.

    I'm not thinking of a separate forum, but a space here on this one. Maybe, or maybe not by marking the posts off in their title.

    Lot's of love

    Kevin and Liz

    xx

  • Well, I will join in. Anybody else????

    Lots of love

    Anne

  • You can count me in too. I go to a coffee morning once a week but sometimes I can't face it. Like this morning! I had to leave the Bereavement site as I just couldn't relate to what people had or where going through. Their loss was different to ours. Odd isn't it but it's true. Here I can relate to the people who shared my journey and whose journey I shared too.

    As we are obviously a bit lost why not give it a try? I am sure there are others out there who are going through their own pain who will join too?

    Then we can all vote for Kevin to be PM? He has so many good ideas. Some people make you sick?! 😁.

    Actually I don't know where people would be without him. We all owe a huge debt of gratitude to Kevin for all his help. Liz is so precious to him and things are not good, yet still he thinks of others. Kevin you are very special and thank you for your idea. We can but try it? I will end up drinking my wine though as Anne tells us all to do that! 😊 Not sure what I have saved it for mind you but even that is sad. Sitting drinking alone isn't great is it?

    👝 nearly burnt the house down with one of these this morning!! Smoke everywhere and I can still smell it even now. Do they make toasters which turn themselves off so you can't do daft things Iike that? Mine turns off but not before burning the toast until it's black as I discovered this morning! There was smoke billowing out the back door! If anyone saw it they didn't bother to see if I was alright.

    The utter loneliness is so hard to cope with isn't it?

    Marie x

  • Hey, don't blame me for the wine bottles with huge holes in them. I agree drinking alone sucks, especially when joined by the evil sad demons and the one that always finishes the bottle, when you thought there was at least another couple of glasses leftover!

    Lots of love

    Anne

  • Anne

    I never drink alone. In fact I am so boring that I only drink if I have a meal with someone. Not something that happens often now. I could count on one hand the times I have had a meal with someone since G died. In fact it's been that way since he became ill.

    Life suddenly seems to stop doesn't it? You also become invisible. Not sure if that is because there is only one instead of two or because as you get older you become invisible anyway. Take care and Hugs to you Anne.

    Marie x

  • OMG Marie! I so know how you are feeling! They look at me with their sympathetic eyes while they make plans that do not include me..... Now I don't expect too much from anyone outside my family. So, I guess, I direct this more about my family....My daughter went off to the EU without a thought of maybe I'd like to go....that's really ok she had to work her sorrow out....but they are a ll back and yet I am still pretty all alone....except you all... and the above mentioned CR.... However I don't try to dwell on that too much and need to take responsibility for the activity in my life....waiting for someone to make me happier just makes me miserabler...so I'm not going to perseverate too much....I think! I do know how you are feeling though Marie,....

    Now about your toaster.....mine pops em up when they are barely toasted....BUT a couple weeks ago I put some eggs on to boil and in all my dementia went off and left them to tend for themselves. I went to the library and store for almost two hours! By the time I got home they were dark brown where thy met the bottom of the now very dry pan .The stench was unbareable I could barely live in the house the next two days....I got every deoderizer sprayed, every window open , every fan on and oh Lord the stench.....finally I just breathed through a towel...The next week I almost did the same thing can you believe it.....No wonder noone wants to be around me....I'm probably more of an imbecile than even I recognize!

    Hahah Well lets hope we don't burn ourselves down before we get to see this new form go up!

    AVB

  • Think you hit the nail on the head with the 'invisible' bit!

    Have been busy all alone cleaning up still. Don't feel anyone else can help! Getting to the last bits now so maybe I will feel like inviting someone for a meal again! Lonely!

    Grandson stays with me 3days a week and college hols. Not sure if he is a help or hindrance yet. He cooks lovely meals but I feel his presence limits my 'outings'.

    It's a funny old new world!

    Yes! Would probably keep in touch. May even get to UK again!

    Hugs to all

    Jen xxx

  • Marie,invisibility is something that I and my husband shared,even joked about.We at least had each other-now I am alone and invisible. Hugs to you. Janet

  • Don't think you will ever be invisible on here! Another good reason to stay?

    Marie x

  • That's why I joined Celebrate Recovery. It's kind of like an AA but more Christian centered...You see, I don't mind drinking alone . And in my early days...knockin off a few Valium etc...kinda hit the spot....don't do that anymore and you know why besides CR....you guys who went through hell just like I and my husband were doing.....

    So here's to a post-psp forum!

    AVB

  • Andrea I just knew you would want to join in. Being alone is so awful isn't it?

    Seems we are all feeling let down whether it be by family or so called friends? It hurts a lot when it's family though.

    We are NOT invisible and we need to find a way forward.

    You are not suffering from Dementia but not talking to people and being alone a lot certainly can lead to that. Sometimes I don't even care which is awful. Deep down I do care but the first bit is my defence mechanism! Making mistakes such as nearly boiling an egg so much that could have left you with no house is a sign of what we are all going through. I have to say my toaster was alright but decided not to pop the toast out! I suppose that's why we are told not to leave electrical items unattended? 😕

    Take care of yourself and remember the new code? *Post PSP...think that's what was suggested? Then people don't have to read our ramblings?

    Marie x

  • Thanks Marie :)

  • What happened to the way to Reply ? Sorry I had to tag onto someone else's comment, but anyway maybe you think u had a bad idea about something else but NOT about this. It is brilliant !!

    Thank you!

  • Hi Anne, 😁😁😁hic !

  • Anne, as I have said before l for one always read your post.,the good advice and stories told by every one who has already gone down this road ..we know whats going to happen at sometime in the future . like you did , we dread the day, however its nice to know how you coped , on this journey ...and maybe we can, once again be helped though the last part of psp. Thank you. for staying ...Brenda xx

  • Yes, I try not to get involved in the new kids on the block....they need to go through this without me telling them what horrors are soon to follow ...

    But I love and still need you all....Truly truly ya'll not only got me through PSP, but you're getting me through the post-psp as well.

    So this forum within a forum that k1 talks about, if it can be done , ;lets do it!

    Andrea

  • Andrea, please don't leave us alone to find out for ourselves. This site is so precious and my only support where I can be me. I might only post when things are bad but that is what is great about being on here. Anyone not involved with PSP has no clue. So I look to the unfortunate ones who sadly have to endure or who have endured this wicked disease. The doctors don't know , my family don't know nor my friends not even my husband can understand what I face every day with my beloved Mum. This site is so special to me and I don't know where I would be without it.

    Your advice and wisdom can not be replaced.a huge thank you to everyone here that by either commenting or liking my response have been more helpful than they will ever know.

    Much love to all xxx

  • Dear Sarah that could have been written by me 11 months ago! I couldn't believe it when I found this site. Sadly I needed it much earlier but you don't know what you don't know?

    Hugs to you sweetheart. You brought tears to my eyes.

    Marie x

  • Maria I'm not too sure of your situation but I'm sure like me it's one of loneliness. I have two daughters my dad, my husband and some really good friends yet I have never felt so alone. This site is the one support I can depend on. Maybe I shouldn't but I do. I admire everyone so much on here, old or new. It's reassuring to hear people be it words of advice, reassurance or just confirmation that my mum is in a good place with me. I expect we can all relate to this in one form or another. Today is a really hard one, hence been up gone midnight with a wine or two banked :) knowing I have to be up at 6:30 ready for the school run, but I do know I have been here before and will be back feeling this way many more times. What I hold onto though is that this feeling will pass, I will once again not begrudge my husband, father kids or friends for not noticing my pain. My goodness I think I have ran on enough. Sleep time for me. But Maria... Thank you and I hope life will be kind to you xxx

  • Hi Sarah, I relied on this site totally, still do, to a certain extent. Who else knows what we are going through, only those that have spent more than a couple of hours with our loved ones, even then the responsibility doesn't get to them. Not even a new born baby needs as much watching, once in their cot, they are safe. We never get that brief holiday. Know that we all hear and feel your pain. We can't do anything about, except lend that ear in mutual support. Let others try and help. Make sure you get out into that outside world, to stop the loneliness.

    Sending big hug and much love.

    Lots of love

    Anne

  • Sarah sadly my husband died at the end of February. So I know what you are saying. I still come here everyday and sometimes try to help those going through what I did.

    Your Mum is so lucky to have you. You are my idea of what a daughter should be like! I have only a son,daughter and 2 Grandchildren and a Brother in Spain. My daughter sadly seems to be cutting herself away from me and with her my Grandson.

    It is bad enough trying to battle through the loss of my husband but sadly she has added another burden to bear. So I know all about loneliness. I also admire you and so many other daughters and indeed some sons who have gone the extra mile for their loved ones. Bless you Sarah and give you the strength to get through all of this.

    Marie x

  • I'm certainly in! I read a lot and post a little. I'm still thawing out, and finding the time to articulate sensitive emotions and experiences isn't always easy. But who else understands better than each other here? I think it's a great idea and would be helpful to everyone.

    Karen

  • Me too! Love you Heady!

    Ketchupman

  • Love and miss our regular chats as well, Dan..

    Lots of love

    Anne

  • Well Kevin, you just showed me how to get off the other forum that I had no interest in...so my question now Is how do we create a forum within a forum?

    by the way thank you for showing me how to cancel other forums here....

  • I think it’s a great idea, Kevin.

    B is in Palliative Care, due to be discharged soon. He needs 24 hour care and we are worried that we will have to put him in a nursing home. We have only been offered four 20 min visits for medication and peg feeds from the CCG.

    I appreciate the experience of those who have been through the final stages of PSP, and have shared it with me. Your idea may encourage more people to stay and share that experience with people like me who are floundering at present. Rx

  • The dress rehearsel thats sadly funny, Anne.

  • Yeah! I made a complete mess of that, now the actual performance........ Nine months on Thursday and the pain is still only getting worse. Please someone, when can I expect to tip the balance in the other directions?

    Lots of love

    Anne

  • Thinking of you lovely lady, I still sounds that things are still very raw for you, wish I could make it all better for you but know that's impossible. I hope that the hurt starts to recede and you can start to feel happier very soon. Still hoping to get to Bristol, will let you know when the time comes so that we can meet up for a coffee.

    Love Kate xxx

  • Looking forward to it.

    Lots of love

    Anne

  • Anne wish I knew but like you I am finding things are getting worse! It is my idea of hell. I hate not having people to talk to and I miss that so much. Even if I am really only talking to myself!

    Marie x

  • I think that's a brilliant idea Kevin, like Anne I will definitely join, you've all been a life saver to me and I would hate to lose contact with the friends I have made on this forum,

    Love and hugs....Pat xx

  • Thanks Pat

    :)

    Kevin

    xx

  • I think that is a good idea too...I think there are quite a few of us who have loved ones at a similar stage? Maybe it is when they are in that later stage that we reach out more. I know I am on here much more so now than when I first joined. I am increasingly needing you lot lol! Great idea Kevin

    Mx

  • I personally have gleaned so much from Abrike, Marie,NannaB, Sawa and many others who have lost their loved ones. Please continue with your love and advice on this forum.

    Althea

  • Here Here

    xx

  • Althea

    I hope you are doing alright? Thank you for saying I have helped you. I am not sure that's true but the kind thought is appreciated. I suppose most of us try to help others in some way? There are a lot of kind people on the site.

    Glad you have found some people in SA. That doesn't mean you can leave here though! 😮

    Marie x

  • Would never leave 💛🙏

  • Hi Kevin, with where I am emotionally I presently would NOT be interested in JOINING a separate forum for those of us who have lost a loved one to PSP, especially where we were the caretaker.

    I presently find much solace in many of the postings on this site. I also would like to think that when I share it might be helpful to some (perhaps only a fantasy on my part). When my son was ill there was little time to carefully give to the reading. Today, I get "aha" moments and more understanding and forgiveness towards myself.

    I do see that there are others who are interested AND THAT IS GOOD.

    If such a site was started would that mean that if we share a memory of what we experienced or a suggestion of what worked for us in the past, that our posting/sharing would not be accepted/welcomed on this site?

    If you are suggesting an ADDITIONAL "GRIEF SUPPORT" site I would be in favor, as long as it does not exclude myself and others from sharing on this site. I am all for INCLUSION vs EXCLUSION/SEPARATION.

    Let me share that I have often skipped those postings that do NOT speak to me, not pertinent, such as CHC. I live in the USA and though the symptomatic experience of PSP is the same.............the accessibility of help is a bit different. I , however, would NOT support dividing the sharing of the UK from the USA.

    Ideas are always good....for it invites input. I thank you for sharing this idea.

  • Right on!

  • Hello enjoysalud

    I am so sorry for your loss.

    I agree with what you say. But I am only one voice here.

    It would be a shame if voices like yours were hidden away on another forum.

    That is the point.

    Two things:

    First veteran carers have a lot to teach those of us struggling and learning about how to make the most of what we have and how to manage each challenge. Without them I would have been fairly lost and struggling.

    Secondly: I am aware that PSP does not end when our loved ones pass on. We are a community and it saddens me that once our loved one passes some folk move on to other places to deal with bereavement and away from those, here, who shared their journey in a small way.

    Some folk will want to move away from here and that must be their choice. Others may want to remain here to share what they have learned and are still learning.

    I have learned quite a bit of what I am likely to face when I loose my Liz from some of the posts above. Just those, have taught me about the next step I will have to take. They prepare me and others who choose to read them. They also allow members here to continue to support those who have shared so much before.

    It would be possible to create a separate forum, but there are few of us. It is unlikely to be feasible and it would, as you say, be divisive.

    There might be a way to make that space here.

    It's not about, 'grief support' I have lost people close to me and that, I know, it's a path only I can walk, it is about sharing with those who care and know a little of what we have been through.

    I am regret that I have upset you. Yes, my intent is to include not separate. However it is for others to decide, not myself.

    I am sorry my post was not clear enough.

    I have yet to face what you have faced and I respect your words.

    Warmly

    Kevin

  • Kevin, thank you for your kindly response.

    I had not heard of a POST PSP on this site until I read your post. Am I missing something?

    I think we all know our own needs. I find, for me, that what I read solicits my response. Many times no response. I would NOT want to go to a separate section because I have lost a loved one to PSP, and be separated, no longer intermingled, from those caretakers currently experiencing PSP. As I have already stated, to read those currently caring for PSP family members provides me with insight to my past actions and gives me great comfort.

    Those who choose to leave this site because their needs are now different.....that is their choice based on their needs. I support that and take no umbrage.

    I am confused. When I read your original post I interpreted that as a personal "IDEA" put out there by yourself for others to give their response. Your response to mine leaves me with questions.

    Is there discussion behind the scenes on making some changes to this forum???? If not....then I don't understand. Those who have chosen to move away or are contemplating it should have that option. AS for me, I am not in favor of fixing something that doesn't need fixing.

    You have not upset me, but you have noted the passion in my response. Ideas are good, keep them coming, but in my confusion I do need a bit more clarity.

  • Hi enjoysalud

    No, there have been no behind the scenes planning discussions that I am aware of.

    I just became aware that so many members who had guided and supported Liz and I had lost their loved ones and were getting less active. I was also becoming aware of the massive hole left for some folks as they switched from full on caring to some sort of void.

    Its different for everyone of course and, as you say, each will helm their own course.

    On a normal modern forum it is common to have sections. I'm sure you know this, but it is worth saying. So one section might be for post PSP care, another for clinical issues and perhaps another called a 'lounge' which is a chat area, and so forth. This 'organisation helps folk to find what they want. This is not possible with HU.

    I agree I would not want to see a separate forum. As you say , that would be divisive.

    Other people are running with their own baton now and so I am going to just leave it be. Perhaps all it needed was the issue to be raised.

    I doubt you are confused, you writing is so clear. I expect it is my woolly writing and giving the post an inaccurate title.

    Be well and I hope to read more from you.

    Best

    Kevin

  • I think you are very clear, Kevin.

    It is just a way of quickly identifying for those who are new which readers are at a different stage but have expertise to share if they wish.

    I imagine many, like me read the site every day even if they don't respond. We feel so close and don't want to lose them.

    love, Jean x

  • Thank you, Kevin, for taking the time to once again respond.

    What will be, will be. I have concluded that I will always be allowed to read what has been posted............which I have mentioned helps me a great deal.......I do NOT need to respond. Mostly my help/healing comes from the reading and a tiny bit that I may be helping another PSP caretaker with my response, but mostly from the reading.

    Its a cliché, but I in my case I find to be very true, "Time is a great healer". It has been close to five months since my son died. Today I have more good days than bad days....than three months ago. I will always miss my son. I carry him in my heart and in my mind, I listen to his voice on my answering machine, I see his image in photos, I have yet to have a dream where he is a participant, I miss his hugs, but joy creeps in more each day.

  • You will be able to read and see every post, just as before enjoysalud.

    Folk seem to have adopted the idea of putting 'post PSP' in their post title if they are talking about all of those issues and feelings relating to grieving and recovery.

    I will never be able to fully appreciate the dreadfulness of loosing a son or daughter through this illness. I still carry those I have lost in my heart twenty years on, but now they haunt my heart with warm memories and I hear their words softly from there.

    I don't really know how to sign off to this post.

    I just wish you the best.

    Kevin

  • Thanks Kevin - I agree with you! xx

  • I know that I still read most posts everyday... I may not contribute much but I'm still here even though it is now a year since Brian passed away.

    I did try the bereavement site but it seemed as if it was full of posts about pets... as much as i understand the hurt of losing a pet it's not the same as loosing a loved one to psp or cbd especially if you have cared for them.

    But I would like a post psp section on this site. Jane xx

  • I totally agree with you! That is why I left. That and the fact that nobody had a clue what I was talking about. At least here you don't have to explain what happened to your loved one?

    Hope you are doing alright?

    Marie x

  • I regularly find my coffee has gone cold when I get on here!

    I still come here because it is somewhere where everyone understands what I have been through. Like others, I find other people just don't understand. Have found 1 other carer who nursed her husband with MSA. We were 'comfortable' together on our bus trip.

    Have often wondered when faced with that "single supplement" when thinking of a holiday - what it would be like/feasible to meet up with some of you !! Maybe on an island in the Pacific (well away from erupting volcanoes, hurricanes and rockets !? Could even be on a boat cruising down the Rhine or through Canada !

    If I don't get too decrepit, I do hope to get back to UK to see family and friends, so you never know!

    Just another thought to throw into the ether!

    Hugs

    Jen xxx

  • Dear Kevin, as usual you have hit the nail on the head!

    I think it is a splendid idea to encourage those who are Post PSP and want to continue on here to do so because when they leave so much knowledge goes with them and when they have just lost their loved one why should they lose their friends on here too?

    Personally, I think we should all stay on here together with no segregation and your idea of Post PSP before their heading will stop having to explain their situation each time and make it easier for people in a similar position to recognise each other and if they wish to 'follow'. Why shouldn't we all continue to hear what they have to say, after all we are all heading that way and will become Post PSP!

    Well done Kevin continue with your good work!

    Best wishes to you and Liz,

    Lesley

  • Thanks Lesley

    And, I agree about no separation.

    Warm wishes to you and Brian

    Kevin

  • Hi Kevin,I wonder am I alone in missing the caring?Never realised it til I watched a lady in hospital giving her wheelchair bound husband a sip of water and then tenderly drying his mouth.My loss suddenly and completely unexpectedly overwhelmed me.I know Des would not want his wheelchair back.In the privacy of the ladies toilet Des told me I was a XXXXXXX fool! he does that often! I have to agree. Px

  • Hi Loppylugs, I don't think it's the caring we miss, we just MISS!!! Even down to someone telling me I'm a XXXXXXXX fool. (Did I really say that!!!)

    Lots of love

    Anne

  • Dear loppylugs, I can't imagine how it must feel to be not doing all of those 'caring things' it takes a good majority of our time on a daily basis. I can imagine that it be a stark reminder to see something that brings your memories flooding back, very upsetting. Take good care of yourself

    Love Kate xxx

  • Hi Loppylugs

    I haven't got there yet.

    I see Heady has replied to you, but you are clearly not alone.

    Warmly

    Kevin

    xx

  • Brilliant idea, I have not contributed often, but I feel lost if I don't get my daily dose of the knowledge and love contained on this site. It has helped me with caring for my mum and I am storing up knowledge for those elements of care that we are not needing yet.

    Whenever I read a post from one of those who have lost their loved one saying that they feel the need to move on, I worry if they have a support group to move on to. To transfer to one especially for PSP survivors, seems like a very sensible idea. They can move on but keep friends in this community of people that actually understand what they have been through. Julie

  • Hi

    Great idea kevin, it is the inevitable end to this journey, a forum like that would be useful for family members.

    Julie

  • Thanks Julie

    Folk seem to be voting with their keyboards so to speak.

    Time for me to sit back.

    They know what they want to do.

    Warmly

    Kevin

  • If I understand correctly - nothing changes but those who have lost their loved one marks it - sounds good to me.

    Well thought, Kevin.

    love, Jean x

  • Thanks Jean... I get an decent thought once in a while!

    Waving at you and thinking of you.

    Kevin

    x

  • Great idea. Not for me yet but I sure would usr it when the time comes. And just marking by subject is the ideal way so those of us who are still carers can navigate easily but we will still want to benefit from the experience of those who have lost their loved ones.

  • As a caregiver of a person with PSP I have come across various practical problems of the day to day.

    In HealthUnloked I found ideas and supports that are not easy to find, among other things because it is a "rare" disease and little is known about it.

    Having an idea of what stage of the disease you are in and what you can expect from what remains to come is something that help a lot.

    The idea of Kevin seems positive to me because the illness destroys the life of the person but also hits hardly the life of the caregiver who one day find themselves in a scenario in which the tasks that they have realized during years and that have occupied substantial part of their lives .... are no longer necessary. The sense of emptiness and the need to undertake a different life are inevitable.

    The idea de Kevin is very positive.

  • Thanks Luis

    "the illness destroys the life of the person but also hits hardly the life of the caregiver who one day find themselves in a scenario in which the tasks that they have realized during years and that have occupied substantial part of their lives"

    Well put!

    Hugs

    Kevin

  • Kevin, I have been a (mostly silent) member of this site for almost 3 years, this is only my third post but I read ALL THE TIME. Please don't setup a separate area. Stay here, this community is amazing. I know I can reach out to "YOU" if I need whatever stage I am at and wherever Mum is at. We are here for each other when we need it most. For some that is when we first hear the diagnosis, when our loved one hits another milestone of decline, or when everything turns to shit. For someone like me who rarely posts I find immense comfort in tuning in and "feeling the love" just knowing I can tap into it at any time, whatever I am feeling. So wherever you are at, whatever you are feeling please come right here and put it out there!

  • Hi teej

    I think those involved are just going to mark their post titles so that they are easy to spot. This seems to be the emerging consensus on another thread above.

    I so much agree with you.

    Best

    Kevin

  • facebook.com/groups/TheSanc...

    Hi Kevin, I saw this on fb the other day as I also follow a couple of PSP pages on there. I'm afraid I haven't read through all the comments on this feed so maybe somebody has already suggested it, sorry if they have.

    It is just for those who have lost their loved ones to PSP/CBD.

    I can understand it being very hard to leave this forum as my hubby is only in the early stages but I read the posts on here practically every day, and it has already helped me get through some very difficult days.

    Dawn

  • Hi Dawn,

    What a brilliant link!

    Thank you.

    Yes, this forum has been a godsend to Liz and I in so many ways.

    Warmly

    Kevin

  • When the time comes I would definitely join in. Support is so important. I can't imagine not having somewhere to carry on chatting.x

  • I think that's a great idea Kevin.

  • Thanks daddyt

    I hope you are doing OK too.

    Warmly

    Kevin

  • Hi kevin. Like you i havent had to face the loss of ger yet but i agree with your suggestion. Its hard to explain any 24 hour period in the life of PSP to an outsider but everyone on here knows and gets it straight away. They understand the guilt, the anger, the lonliness, the relentlessness of ever changing symptoms, the continuous rushing to do so we can be back with our loved ones and when it stops how do you go back to a "normal" life. Perhaps the site for loss alone will be a comfort blanket for everyone to ask and air their lonliness and loss to those who completely understand what they are going through, with no tutting or rajsed eyebrows when we keep posting.

    Just a thought. I think i would appreciate it.

    Marie

  • Hi Marie

    Your post is so eloquent.

    Yes.

    The posts on the forum, from those who have lost their loved ones have been quite humbling for me.

    I often feel so lonely. I can seldom leave the house and the only people I generally see are Liz's carers. We moved to this town just before Liz's diagnosis. My work was so full on I had not had a social life for quite some years and so leaving work to care meant leaving my friends. As we know work friendships fade once one leaves whatever galley one was rowing in.

    PSP is so destructive!

    Now, as I suspected, for many there is more than the usual loss of someone close. Folk are often left with lives that they stripped to the bone in order to do the caring.

    The very humbling part is that most folk in the post situation seem to be saying, "hang on to the days you have, they are wonderful by comparison."

    I have taken this to heart as has Liz (I read posts to her) and we have renewed our love and warmth as a consequence.

    Wishing you both 'good days'.

    Warmly

    Kevin

  • "Left with lives that they stripped to the bone to do the caring..." that phrase hit home. Well put.

  • Kevin, I think it's a great idea to have a community-created "subgroup" of threads related to life after PSP! I like your idea to keep it in-house and be inclusionary of anyone interested. I find posts from people dealing with more advanced stages an important reminder of both how lucky we are *now* and yet the need to be realistic about the future.

  • Hi NH

    Absolutely.

    I have already learned so much from the 'loss' posts that have come up in the last week or so.

    Yes, I ma so lucky still to have Liz. That too is something the posters have taught me.

    I so much agree with you.

    Wishing you the best

    Warmly

    Kevin

  • Finally My dearest father lost his battle to PSP on 15th September, it was really painful as you all guys too must have gone through to see one suffer soo badly .hopefully soon there will be cure for this PSP and others don't have to face what we have gone through

  • Hi HarshadJ81

    I am so sorry to hear that.

    I hope the end was a peaceful one.

    Warmest wishes to you and yours.

    Kevin

  • So sorry to hear of your loss. May your father rest in peace, finally free from this evil disease.

    Sending big hug and much love

    Lots of love

    Anne

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