PSP Association
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I wonder who I am

I don't really know who I am anymore. I look at myself and see someone I don't really like. I was never like this (yelling, etc. a shrew) and now am, numb and begging Charles' foregiveness for my actions. I just didn't know last year what it was all about and though this year is a bit better (the living hell, hell coming up (when he passes) and the hell of guilt) are keeping me in a state of agony.

How can we forgive ourselves? This disease is the absolute worst I could imagine and unless one knows what we are going through they will never understand. The loneliness, questioning even our lives together, etc. Robbing us of every good thing there ever was, and it's still not over. What then?

Cuttercat

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Cuttercat, I wish I had a magic wand to erase all those guilt feelings. I wish I could have a movie so that you could see and understand the behavior on your part that was triggered by the PSP. I don't. All I have is prayers for you.

As you know I lost my son, 55 years old, to PSP May 4, 2017. I still carry guilt. I think guilt is just part and parcel of being the caretaker for one with PSP. How nice it would be to be the caretaker but have paid competent caretakers round the clock or afford (I live in the USA where health care is $$$$$$$) skilled nursing at a wonderful establishment where we could visit our loved one from 9AM to 6PM and only be his mom, bride, child.

When my son was a baby I accepted all the accidents and mischief, that's what babies do.....it helped to remind my myself each hour of each day that my son had NO CONTROL over his actions, as he did when a baby.

None of us signed up for a loved one being visited by PSP/CBD,FTD/ETC.

If we were in their shoes...........................

I can remember major incidents where I got so furiously angry at my son. They haunt me to this day, but time has healed much.

I was not there when my son passed from life to death. I had gone home thinking I would see him the next day.

Some of us have heavy duty tempers, some of us never go there, but we are who we are and we have all chosen NOT to abandon our loved ones. We have given them the best that we could under the economic, age factor, and health factors/circumstances that we could.

At the end of each day and beginning of each day, AS YOU ARE DOING, ask Charles for forgiveness...watch for a thumbs up or some acknowledgement from him. Forgive yourself each day for what you wished you had done better. Acknowledgement to yourself where you HAVE IMPROVED. You say you are not where you were last year, you have seen improvement...FOCUS ON THAT.

One thing we cannot do is undo the past, but we do have forgiveness, a lens to view the past.

Where you can and when you can...get help and if none exists acknowledge that.

Pray every hour for patience, pray for compassion, for forgiveness. I keep you in my prayers.

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Hi Cuttercat,

Believe me you are not alone. I hated myself for most of Davids last eighteen months. All I ever did was rant and rave and shout. David hated me for it, but he understood where it was coming from.

I feel so guilty about it, especially now that he has gone, and I feel that I ignored him, although in reality I just never stopped work, housework, cleaning, washing, ironing etc.

It is a natural thing, the disease takes everything that both the sufferer and their partner/carer has away from them. You cant really do anything together, the sufferer cannot do anything themselves, and the carer is frustrated, fed up and exhausted.

Both of you have nothing left to give, yet somehow you have to continue, a lot of the shouting etc is exhausted desperation.

The biggest plus to it all is that you know it is true love, as you are still there fighting on together. David was terrified all through our relationship that I would leave him (he was naturally a worrier, and the age gap made him worry about that even more, especially when he got PSP)

He paid me the highest compliment not long before he died when he admitted that he finally accepted that I wasn't going to run away. That meant so much, and I think you can take the same heart from your situation. You are there fighting for Charles, looking after him, it is only natural that it will take its toll on you.

There is something about this evil disease that takes everything from the non-sufferer in a way that I have never seen a disease do. As you say, unless you have been there, you can't understand it fully. All I can say, is keep up p the good fight, look after your man the best that you can, and know that we all on here understand exactly how you are feeling.

With my biggest hug, and love. You are amazing.

Derek

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Please don’t beat yourself up, we all do it, we are tried we are exhausted, we have lost part of our lives, we are living a nightmare, we are grieving, we are so unhappy with this illness, we can only do our best, which we ALL do all the time. I have shouted at George a loads of times, hate myself after but it’s life, we are trying to cope with everything, from housework, book keeping, bank account, bills, shopping and most importantly looking after our partners, making sure they are well looked after, and fighting their corner all the time, not wonder we feel down at is normal, you are tired and exhausted you are human. Big hug coming your way. Yvonne xxxxx

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Chapeau Yvonne!!

Thank you.

Luis

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Chapeau Derek!!

You have put your finger on reality.

Thank you.

Luis

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Derek

You are amazing. Such love and commitment and bearing your partners doubt whilst continuing to care.

Thank you for posting this.

It has helped me to reach out better to my Liz. We are both better for it.

Hugs

Kevin

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I know those feelings so well, Cuttercat. We all do. We all hate the person we become at times. I used to say to Chris that I was looking after him 24/7 - never doubt that this is love ! He did know he was loved and so does Charles.

Big, big hug from Jean xxx

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Dear Cutter: I feel very much with you. This disease is destructive in so many ways. Not just our loved ones' physical life, but our lives too, our personalities, our future, our hope, our relationships. I find myself sounding like a cold and snotty schoolmarm - and I told myself I'd never "infantilize" him :-( it just happens before I can catch myself. I hate it and it makes me bitter. I feel bitter about the friends who've "left us behind"...but really, what do I expect? They can't communicate with him and he doesn't want to see people or socialize or do anything - and there's so much less in my life other than this, so - of course they drift..

I swear to heaven I'll never complain about any Neurologists' "lack of bedside manner" as long as they are researching the sh_t out of this disease to get an end to it!!

Hang in there xxx

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Dear CC,how I echo your feelings and I have no words of wisdom for you.Don't let PSP take you both. ((((((HUGS))))) AND I'm not a huger.

You can do this.

Dee

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Dear Cuttercat

You have raised something I am sure we all feel and also.do. I was never a ‘shouter’ but the exhaustion and frustration of the unrelenting impulsivity is so very very trying. I don’t think anyone caring for someone with PSP/CBD could remain ‘sweet natured’ The professionals rarely acknowledge this huge stress.

Trying to carve out a few minutes of calm everyday for ourselves is the only thing we can do. Hang in there

Sending love and understanding

Tippy

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Dear Cuttercat, my thoughts and prayers are with you.

Althea

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Hi!

From what I see in the comments and feel in myself, Cuttercat has presented the double side of the PSP, that of the patient and that of the caregivers (the main caregiver is special).

Every day the main caregiver enter a minefield and you have a day ahead in which you have to turn off small, medium or large fires.

The stress is very strong. The temptations to run away from the PSP environment are important.

Responsibility, loyalty and affection with the usual companion, avoid that this situation splashes too much to the rest of the family and friends, try to develop everything with balance and normality ... You draw strength from somewhere.

But sometimes you overflow, you get irritated, you raise your tone of voice, you swear and stop because you feel some pressure in your chest, a strange pain in your head and a voice that tells you it's better to go out and take a walk .

The Anne's sentence synthesize the right attitude:

"Never forget to get plenty of rest, ask for help and most of all" ditch the guilt! "

Thanks to everyone: Cuttercat, Ratcliffe-Derek, Yvonne, Raincitygirl, Tippy, Anne, ......

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Thank you.

Lots of love

Anne

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Hi Cuttercat

I read your post last night and have been thinking.

I can see there are great posts below and the advice is good - look after yourself, get as much love and support as you can etc, but understanding why it is like it is can also be helpful. Why do all of those outbursts happen?

Here is one psychological explanation which might make sense.

The ideas are from Eckhart Tolle. I used to use his approach with some patients. They all liked it and found it helpful.

Essentially he refers to the, "Pain Body". Think of it like and 'organ' within us which is full of all of the pain, suffering and loss and all those other things we don't want, which we have suffered. Imagine we've been stuffing painful and anger causing, events in there for the whole of our lives. Like a laundry basket we deal with some of those events, we process them and get the pain out of the memory so to speak. Others might get left in there or during busy traumatic times there's just not enough time to process them, to heal ourselves and we keep stuffing stuff in there. At these times it gets so full we have to work quite hard to keep the lid shut. Otherwise it all comes bursting out.

Every now and then something will happen which causes one to loose ones grip on the basket lid and huge amounts of pain and anger come flying out.

Sometimes it is so out of proportion that we astonish ourselves at our response to the event. "Is that really me?" "I don't recognise myself." In these times we are also often quite disgusted with ourselves. That we could be so horrid.

I would say very strongly: Accept that you have been through a traumatic experience. Accept that it has caused you a lot of pain and suffering and that you are merely human and this is normal. In time, in a 'healthy' person, the pain diminishes are our brains process it and overlay affirming experiences. Therapy can speed the process up. However a good first step is simply understanding what has happened.

His book, "Living the Liberated Life and the Pain Body" might be quite helpful. I've not read this one, but it's shorter than many of his books and so it might give a quick insight.

He does not just explain the why - he has very good advice on how to process and reduce the pain too.

We are still the person we were. We are simply in pain.

Warmly

Kevin

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Adding - I too struggle with these issues. Sometimes I wonder whether I will ever put a meaningful life back together when its all over. Find a me which is functional and fit to be with in company. We heal. I just have to keep faith in that.

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Thanks a lot Kevin.

The image of the process according Eckhart Tolle seems very appropriate and close to what happens inside me. It is a luxury to have your comments.

A big hug.

Luis

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Thanks Luis

Your add a lot to this forum.

A a group we all make this place good, eh?

Hugs

Kevin

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This string has been so rich. Thank you Cutter, and thanks Kevin - You are a true Educator :-)

Anne G.

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I think that we all feel so frustrated as care givers and react in different ways, I am guilty of being too quiet and not talking to Ben to keep him in the loop. I try so hard not to do this as it must be awful for Ben I bet he feels ignored. When I get feelings of anger my first thought is 'what if it were me relying on him for my every need' and it that makes me pull up sharp and kerb my tongue. It doesn't however stop me thinking those things. It is a long lonely road especially when they don't want to go out anywhere and you are stuck in the house responsible for everything. It is a stressful situation and hardly any surprise that we lose it sometimes. Sending you love and support CC.

Kate xxx

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Hey Cuttercat, we all have our arms around you in the biggest group hug there has ever been.

We all forget in the height of PSP, it's two people that suffer with this evil disease. The sufferer and main carer. Cuttercat, YOU are suffering with PSP. End of!!! All the symptoms you are describing, are because of PSP. The tiredness, the frustration , the guilt. They are all classic signs of a carer looking after PSP. That doesn't make you a bad person, just someone who is suffering. Would you be kicking yourself around the park if you had broken your leg and in pain? No, you would accept it as a consequence of an accident. Accept all these feelings you have, it's part and parcel of Charles's PSP. You don't blame him for having it, so don't blame yourself for the suffering it causes.

Every single one of us, has/is /will be, felt like you are you, at this moment. The biggest surprise is, that nobody actually runs away. Well perhaps a few have, but they are not on this site. If you are there, caring for your husband, what on earth are you feeling guilty about? Of course, there is the "this is happening on my watch and there is NOTHING I can do!"

To be practical, you are extremely tired. You need a break. What sort of help have you got coming in? Somehow, you have to find a way to get more. Nobody can look after some one with PSP on their own, including you! If you don't get more help quickly, you are going to crash. Then what happens to Charles.? Believe me, I did that. It wasn't pretty. Steve suffered big style, because of it. I doubt he ever really trusted me again. Thankfully, my daughter stepped in and things got back on an even keel. AND I got help in.

Please, please stop beating yourself up. You are doing a great job looking after Charles. He knows it, we know it, it's about time you did as well!

As Luis has very kindly contributed the sentence to me " Get plenty of rest, ask for help and ditch the guilt!!!" The only thing you are guilty of is loving and caring for Charles. This world would be a far better place if there were more people in it, like you.

Sending big hug and much love.

Lots of love

Anne

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Cuttercat,

Wow, every caregiver,partner,or spouse can relate in a big way to what you are saying in this message. Of course during our spouses duration of pain we have significantly changed our own demeaner. I ask you to never question what you had years ago with Charles ...It will always be there never doubt it! but it is a memory that he may or may not remember and embrace ...but it was real ..and had longevity that outpaces the length of this HORRible disease. We are lucky to have found the one that completed our life and that is what keeps us dedicated to seeing this most horrible of diseases thru its finish the best way we can ....Cutter .you are in a place of irrationality... step back and evaluate this BIG situation .You are a loyal, loving wife that has exhausted your talents fighting this unrelenting disease ..I am in a situation that mirrors yours with my wife of 47 yrs PSP for 6 ....2 yrs now I am with her every step......or she would be gone ....Do not place this burden of doubt on your situation ...see it thru....and then find the peace that will come by knowing you did everything you could for your George! Many good thoughts your way.....j

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I believe PSP is a cruel illness that affects people in differing ways - for example it affects the patients totally, physically and mentally while it affects the family, spouse, carers, with mental and physical exhaustion and GUILT.

While P was still at home I changed into a screaming, swearing shrew ! Now he is cared for in a nursing home, I can be his wife again. I look out daily for his welfare and champion every cause for him BUT when I come home again I feel the GUILT. It won`t go away (and I don`t expect it to) but normally I am not a quitter and I feel I have quit this time by giving the daily responsibility to someone else.

PSP is horrible !!! Thank goodness we all have each other on this site, we all understand what everyone is going through.

xx

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Here here Anne xxxx

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Like most of us you are exhusted physically and mentally. Burnt out. I have my moments as well.

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Dear Cuttercat,

What you're feeling is a very normal reaction to what is a completely abnormal situation! Caring for someone with PSP is like being in a warzone 24/7. Make no mistake, the stress and unrelenting pressure for years on end is something that even soldiers don't have to contend with. They get shipped out for R&R whereas we are all hostage to this terrible disease and can't escape.

I shouted and screamed, and ranted at the sweetest, bravest, loveliest man who was the love of my life. He didn't deserve that and I hated how I behaved. But I stuck it out and he always forgave me, and we loved each other to the end.

My cousin gave me some very important perspective. Out of all the time I cared for him, the amount of time I behaved really badly was in the minority. Much more if the time was me being more patient, more loving, more like myself. It's too easy to focus on the bad times when you should try to focus on the better times and accept that every now and then you're just going to lose it. It's completely normal. Take a deep breath, say sorry, ask for and be forgiven and take a minute for a cuddle.

Big hug and sending you so much strength and love.

Sharon xx

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Your rawness struck such a chord with me. You are under such pressure and stress doing something that you never thought you would have to. You are just a person trying to cope, not a robot. It’s so hard not to feel guilty but the stress has to come out. You are not alone xxx

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Dear Cuttercat and all those who are still in the caring stage

I feel for you, and remember all too well how frightening, exhausting and lonely I felt at times as a caregiver - it was so hard to remain loving and patient when so stressed. I just want to give you hope that healing does occur. I am 7 months post-bereavement, and I feel I am just beginning to witness the me that once was emerging. I have shed many many tears, and long to have back what I have lost, but I have found the sadness of grief easier to bear than the stress of care-giving an illness such as PSP (or in my husband's case PPA/CBD). The living absence of the partner he once was, and witnessing all he had to go through was worse.

I hope all the group hugs and well wishes at least enable you to feel less alone.

Fiona

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Oh Cuttercat, I'm so sorry. We're all here - either on the path behind you, in front of you or beside you. Be kind to yourself. It's the PSP not you. Thinking of you and hoping tomorrow will be a better day. Erica xx

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I wish I could say things of support the way you are all doing! I am so proud to have been in this site. To have found you all. While my husband was dying I felt that support and those hugs and they helped me get thru. God bless you all !

Sue

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Dear CC, for what do we have to forgive? Did we cause PSP? did we try not to make our loved ones life a little more comfortable; a little safer? I have read the other posts and infact written one to a person who was feeling the same guilt as you . Like Anne said, PSP does not just affect the patient, we are bound to go through all myriad of feelings. I try hard not to let the what ifs creep in and start berating my struggle with B. I have to remind myself that I did the best I could for him. And I will say it again, if you are on this site , most likely, you are doing the very best you can do for your loved one. No guilt ever needed even if it comes with an outpouring of emotion.

Do not let PSP rob you of WHAT YOU DO HAVE and that is time to say ,"I love you"; making good and even happy memories right now. And even when those guilt pangs creep in don't let them stay; sweep them out like you do the dirt on the floor.....

Love you CC

AVB

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Dearest Cuttercat,

What you are experiencing is totally normal and I guarantee all of us carers have had emotional outbursts brought on by frustration. There is nothing on earth more exhausting than caring for a loved one with psp.

Praise yourself for the care you are giving Charles instead of beating yourself up. All of us understand as I’m sure Charles does.

Sending you much love and hugs, Michele xx

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Cuttercat, every thing that you have written, struck a chord with me. I did not recognise the person I had become and hated myself for how I was shouting at the husband I adored and had relied on greatly. Two things that helped me, both of which I got from this site.

1 When dealing with a situation, I would say to my husband, " I am ranting at the PSP not at you, because I love you". This, he acknowledged, we both felt better about it and I could rant on if I wished.

2 I think it was Heady who said retreat, reflect, react, instead of reacting first. This is hard to get into but does help a lot.

I changed into a monster and was surprised when I asked husband once what he was worrying about. He said he was afraid I would leave him. I told him that I loved him to bits and would never do that. He looked surprised as my behaviour had obviously been sending signals of a different sort! After that, I would make sure that I told him how much I loved him on a regular basis.

Now he is in a home and at deaths door. I sit by him every day and hold his hand. My family are here. Yesterday we were all singing along to Roy Orbison and the Four Seasons as we used to on car journeys many years ago. B joined in with grunts . Strangely, a very sad but happy family time .

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Hi Robbo, sorry to hear that your husband is nearing the end of his journey. I remember our daughters sitting on Steve's bed, wine in hand, singing all the naughty rugby songs,he had taught them, when teenagers. He wasn't responding, but we all knew he was listening. A special moment.

It was my counsellor that told me about the 3R's. Like you, I manage to remember them a couple of times and yes it did work.

For those who might be reading this for the first time. This was one gem, I learnt from counselling. It's called the 4R's versus the 3R's. We all naturally, "React, Retreat, Reflect then Regret." Try this way " Retreat, Reflect, then React" in other words, instead of reacting first, take a deep breath, turn your back, go out of the room, anything, think how you are going to deal with the situation, then go and sort out the problem. I promise, it does work. I even managed it a couple of times! It's very hard and of course you wont be able to do it, the majority of the time. But even one shouting outburst saved, will help both of you enormously.

Sending big hug Robbo, lots of strength and much love

Lots of love

Anne

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For me, most of the outbursts were when dealing with blood , urine or worse and wasn't possible to leave !!!

Shouting was a way of keeping to the task in hand - instead of crying.

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Me too, Jean! But I think that was where we were meant to take a deep breath, turn our backs for that vital couple of seconds. I am sure we both managed to do that on the very odd occasion!

How are you?

Sending big hug and much love

Lots of love

Anne

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Too true, Anne. Looking back I can see we were heroines ! We were tested beyond endurance. Chris knew too. Like Steve he was struggling with coping with his helplessness. I can't imagine what a torment it must have been for such energetic and active men to be trapped in their body.

Like you I am coping but still always close to tears. Does that get better ?

Big hug and love back.

Jean x

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I'll let you know when/if it happens!

Lots of love

Anne

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Yes it's ALWAYS the wet bed! It just get me going.

Cuttercat

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Thank you Anne. Yes you are right , we don't always succeed, but when we do, its great!

Thanks for the hug and love. I really need them at this time. X

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Hello, Robbo.

I remember well the time you describe. Its so poignant and precious for you all.

Big hug from Jean xxxx

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