Only 'mid' stage I guess, but I don't want to be here, don't want to do this, doesn't help he says' do you want to put my socks on, etc' like he's doing me a favour!!!! Cooked dinner for the first time in 4 days, it's in the bin, he had an 'accident' as I put his in front of him, sort of put me off mine, I might as well save time and money and stop going to the supermarket(except for wine!)
Still we have had a whale of a bank holiday watching the repeat of the repeat of ....
Sorry to moan, I know we're all in same boat, I seem to have one ok day, then 10 spiralling down, and 20 picking myself up again( guess we all do)
Thanks for listening
Debbie xxx
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Oh Debbie it sounds so familiar, my heart goes out to you, this PSP is such a horrible illness. I am feeling for you, I can relate so much to what you are saying, I suppose nearly everyone can relate to you. Bit is so hard this PSP road we are going along, stay strong. We had a bad day yesterday, George had his breakfast wanted to go back to bed, which he did, we got him up when lunch time career came in, and then all the afternoon he wanted to go back to bed, he was making all these weird noises, I felt like I was going to scream, kept him up to night careers came in a 7.30, such a relief for him to go to bed. Debbie sending you a big hug. Yvonne xxxxx
I know where you are coming from Debbie, I expect we all do. Nearly all of my main meals are spoilt by accidents, I'm convinced the smell of mine cooking triggers a movement, so now I try to eat out every time I have a sitter or carer. Not expensive meals but just one I can eat without the smell of you know what in my nostrils. I wish I could say hang on in there, things will get better but they don't. Instead I'll say, try and hang on in there and hopefully you may get used to it.
Thank you, NannaB, You are doing such a marvellous job, If I thought I could have just a little bit of your inspiration, I might be a better person xxx
Oh Nanna can I relate. I find your post extremely funny. Oh my, we have been reduced to potty humor I am always rushing around trying to get as much accomplished as I can when I have help that I often skip eating and come home ravenous without any energy left to cook. Sometimes dinner is just bread and wine but when everything is quiet and he has been bathed and tucked into bed it feels like a feast to me!
That made me smile Goldcap. Your main meal, bread and wine. I'm a Christian but do eat and drink others things besides communion meals. Perhaps that's why it feels like a feast.
I totally get you, it's such a load of s**t isn't it? Tiring, draining, never ending!
I've just done an overnight stay at my best friends (haven't seen her in over a year)! When I left there I went to meet another dear dear friend that I haven't seen in 9 months, I left them both crying my eyes my out, realising how my life is on hold, but feeling bloody selfish for saying that! Had an amazing 24 hours, followed by s**t loads of tears, because I've actually realised life goes on around me! I miss those friends so much and right now can't see any point to anything, just sitting here downing a bottle of wine wanting this bloody Psp to foxtrot Oscar! So trust me, I DO get you! My heart goes out to you, your not alone, big hugs x
Yes, I feel like my life is on hold and when this is over, I'll be old and spent. Life goes around me as well, even though I work. Noone every visits us unless we pay for carers. Such is life and the future.
I am rather quiet here at the moment. 5 days of being driven crazy. We were offered respite care... But everywhere that is half decent is full.
When it is this bad I just want to walk away. Yes, I get that desperate.
Like you we are only 'mid way', it is still hard.
I think we have got through it now... today was better. I said some very harsh things. like, "If you want to treat me like shit then I will walk away and you can end your days in care."
I hate that me. Just desperate.
I have three OK days and then, typically, she will knock the hell out of me for three days and then I am out and de-motivated for four. A well worn cycle. Then we have three good days and... the same.
I guess this is ringing bells?
And yes, I often skip the meals I make... Just too upset to eat.
You go to the supermarket? WOW... I get my stuff delivered now. So often I feel too low in self esteem to go into public, but when I do I find a little of my own self.
It sucks doesn't it.
Every day I try to be a little bit more sussed at the incoming and every day I try to do better.
Y'know, in my professional life I fronted many, many police operations. Went into dangerous situations to resolve them, with police support. I've had people screaming at me, threatening to kill me and much more. Stress? I had it in bucket loads and coped just finer.
Being a PSP carer has totally blind sided me. I struggle often.
Being strong? For me it is trying to get some space to recover. Plasnning ahead. Trying, and failing , to walk away when shit is kicking off... but I am not do good at that.
Coping strategies are the key... Wine is one! But working out how to deal with hings in advance helps.
The trouble is PSP seems to be a great illness for winding up the carer. My lovely L has better timing than a top comedian when it comes to 'punch me out' lines and behaviours.
Day by day. Its just day by day and getting as much support as is around. Getting time away wherever possible and not giving in.
There are folk here far better than I on this coping stuff.
That's just what I was going to say Satt2015. Things can change so quickly. One minute I can think the day it going well today and then Wham! More grot to clean up. But when it's all cleared up the day can improve again....until the next time. I had a thought the other day, would I appreciate the good times if I didn't have the bad. I answered myself; yes I would. I don't need the bad to appreciate the good but I'm thankful I do still have some good.
Unbelievably yes. When C was diagnosed I made a conscious decision to make sure my whole life wasn't going to be PSP. As soon as I left work to look after him I joined the local U3A and have more friends now than I had before diagnosis. I have known several full time carers and have seen what it did to them and am determined it's not going to happen to me. If I can't get out, I invite folk in. Every week I have Friday film night with a takeaway or something easy cooked by me as well as friends in for coffee. If I get a sitter I go out. The house can be a mess and the grass may need cutting but I'm out of the house soon after they arrive, usually to meet friends. Sometimes I just want to be alone so I'll take myself to a National Trust place and eat out or go into town. It gives me something to talk about with C, well I do the talking he is a captive audience. I have lots of hard, smelly, sad, angry times but the good times makes them bearable.
Hi Kevin, we ought to get a record made, with " I can't cope, if you treat me like s..t, or tell me to "run away and play!" again, I am definitely going too and you are going into a nursing home full time!" I dread to think how many of us has screamed this at one time or other, or in my case, most days! That doesn't make us bad or uncaring, we are just desparate and "suffering" the symptoms of PSP.
Hope you find somewhere for Liz to have some respite care soon. It really does help.
Kevin, I am sure that you know this, but you should not be caring for your wife if she is beating you. This is a risky situation for both of you and a third party should be involved, giving you a break away from the stress. When a friend's husband lashed out at her, giving her facial injuries, he was removed from the house and never went back. He had dementia and could be excused, but it still put her at risk. Heaven forbid that, quite understandably, you retaliate one day to protect yourself. where would you be then? Forgive me , I don't want to cast aspersions and having read your posts, I can see that you love your wife very much, but we all have a breaking point and for me violence would be it. Much as I love my husband, it would be time for someone else, less involved, to care for him. I hope I haven't offended you, but I am concerned at your situation. Big hug. X
No, its not physical. L is gentle as a lamb. It is behavioural and emotional and it goes in cycles. I think she is angry about the illness and some days she becomes difficult. Laughing whilst trying to tell me what she wants and the more frustrated I get the more she seems to do it and many other small things. When they are added together and stretched out over two or thgree days it wears me down.
Yes, breaks. I have been re-negotiating with the CCG for time off each week. At the moment they are offering a respite break with Liz in a Nursing Home. We don't want to do that.
Right now I am trying to find another agency where the staff have even basic sense and training.
Thanks for coming back. (and for the hug)
Warmly
Kevin
xx
Yesterday afternoon things improved... today is a lot better.
Hi Debbie I have often spurted out I dont want to do this no more I am always saying it, it seems to be becoming like it will be like this forever I feel like a permanent baby sitter just sitting in the flat with no life just providing food and drink and wee wee times. I have become so used to this that I dont know any other way of life its been soooo long . Will I be doing this all again next year 2017 it never ends.
Been there done that got the T-shirt as the saying goes.... but how it does hurt to the very soul of a person.
I tend to do my main meal after i have hoisted Brian into bed for a rest. You can guarantee that as soon as Brian is hoisted out of his chair he will open his bowels so i know that after i have cleaned him up etc he will sleep for about an hour. Enough time to cook and eat my dinner. Not that i cook much these days i tend to do quick and easy meals and even microwave meals.
I find the thought of cooking for one is so much a waste of time. I got to the stage i was buying food just to throw it away because i couldn't be bothered to prepare and cook it let alone eat it. So now i cook pasta or ready meals and frozen veg is so much more convenient then fresh. When i think every meal took hours to prepare and cook i now like the idea of just chucking a handful of pasta in a pan and adding a few veg and a tin of soup over the top. That does me fine. Especially as i dont even bother with the meat half the time. Janexx
Jane, I had to laugh at your cooking technique. I do the same thing with the pasta but pour wine and olive oil over the top instead of a can of soup! I also pour a glass of wine on the side for me while I am preparing it!
It's our normal! The fact everyone on here agrees, shows we are fine. If Debbie and I have an iPad as our best mate, what's wrong with that? It's the others, the ones that go out to work, meals, enjoy life with others, that I think are odd, I mean who would not want to sit at home, on their own, eating food with the smell of "you know what" drifting around the house. That has to be normal, I do it most evenings!!!
Debbie I am always saying that I just don't want to do this any more, who on earth in their right mind would want this life, only us, the people who obviously care about their partners! I often think if I could have seen this coming all those years ago I would have run a mile in the opposite direction, but deep down I know I truly care about Keith and that's what keeps me going I suppose.
He is in two weeks respite at the moment and guess what? I'm feeling guilty for enjoying having the house to myself, no carers coming in and out, no appointments, no mithering phone calls, just complete silence, heaven!
As for the shopping, I don't do that any more, order everything online, it's so much easier!
Don't ever feel alone in this nightmare of a life Debbie, we are all here and understand you....
Big hug Debbie with you and the rest of you on here with this psp think we are all going though this bit of can't do this anymore stage ping meals and online shopping not been out if the house in a long time it's like having a newborn eat sleep and poo but we love them all the same xxxx
Oh Elaine, you need to get out of the house. Don't you have anyone who can sit for you. I think your husband is still young is'nt he. Can't you get him outside? We all need help but unfortunately we have to seek it out ourselves, initially anyway. For our physical and emotional health we need to get into the fresh air, with or without those we love who live with PSP. I would have given up years ago without the company of others who I can laugh with and talk about anything other than PSP? Please try to find a way.
Hi nannab yes hubby is only 53 we do make plans to go out then he will say i don't want to go out today he is waiting for his sister to visit so in his mind if we go out he thinks he will miss her not that she is coming we do sit in the garden mist days keep us going respite is being sorted so I will get out but for now happy to sit in with mr man lots of love e xx
Yes I can't help feel as if I am bipolar...Last week I was in my manic phase fighting in a positive way not allowing PSP to win etc etc! Thsi week I am in my deprssive state with fear, anxiety , inability to sleep, paranoia, not eating etc etc....and just a feeling that everything is falling apart! My bipolarity scares me more than the PSP...I even told Bruce I'm quitting; I'm out!!!a I left him on the bed and when I came back he had not moved waiting for me to care for him......(it wasn't more than 3 minutes but still I left!)
I went back to your old posts and found that you have been grappling with this same anxst for ever....and rightly so....This is a good place to be to help amend some feelings but have you considered a counselor? I wonder what it would be like if I could glean anything out of it...would they know how to help me......I don't want to become manic depressive and I don't know if one can become bipolar solely on environmental reasons....one usually looks at it as a neurological as well as psychological issue...I dont have it neurologically but boy howdy my...all of ours environment worthy of depressing those who enter in!
So What to do....Continue to go shopping....continue to eat and serve him his dinner...I take it he can eat ...no PEG...I am sorry I am rapidly losing my memory... When he says something like Do you want to....answer him candidly not out of malice..."No, not right now" ...."I'll do it in a minute....Can you do that yorself?".....When you have overpowered and conquered that feeling that he is doing this against you, the better you will feel.....the more joy you will have when "put upon" by him....I say this knowing full well how it feels when they ruin the thing you just fixed , bought, replaced, saved for the 15,000th time or when you pour your heart out for just a glimpse of sympathy and all you get is another request to satisfy his need....I have really had to come to terms with this emotion and I have not fully conquered it...but one thing to healing is recognizing the problem ,and for me, knowing that B is not doing this on purpose helps me recenter..... So get help...get a break ...go shopping eat...and and be here....Jzygirl got me through a medical meltdown this morning...thank you God for this site...B is doing ok. Our husbands are doing ok.....It's us we gots to take care of
I haven't eaaten biscuits in years...or watched a tv program without hop skip and jumping from one show to the next! He has full "control" of the channel changer, however...does yours have his own clicker?...Not much of a remedy I tell ya...yours does really takes the biscuit...
I'm there with you. Cooked all weekend and some things are not doable anymore. He chokes. It comes and goes depending on the day, but you know that.
I feel the same way, in the middle, trying all avenues and getting no help whatsoever. Constantly worrying about everything and nothing I can do about it.
And, yes, there are happy moments still. Later I'll include a photo of Charles at the family visit. His last.
We are all in the same boat, but at least it's a boat!
Cuttercat, It is a sailboat. And we have to man the ship through the storms and breathe through the calm periods. Sometimes we feel adrift, lost at sea. Other ships pass us by, waving, thinking we are sitting there in calm waters doing ok. But we know the next storm is on the horizon. And when it hits sometimes we get knocked overboard and a fellow carer throws us a life preserver so we do not go under and drown. On really rough waters we sent out an SOS so they will know we are in trouble and they can locate us to help. But the weird thing is, there is no land on the horizon, we just keep drifting and battling the storms. Every once in awhile after a storm there is a rainbow that takes our breathe away with it's simple splendor..until the waters start to churn.
Cuttercat, I just saw this post. Husband's family visiting and busy.
I hope his injuries were not substantial. (But really, are there any inconsequential ones?). It is awful the whole bloody (literally) ER scene. If you saw pictures of some of his injuries you would not believe he recovered from them. And somehow I learned to stay calm and wrap him up until I could get him there. Once he fell and opened up a wound on his head that still had stitches in it! Did they bring in a social worker to talk to find out how he was hurt? That one always got me. We finally found a small ER where we got to know everyone and (after I educated them) they understood about the PSP. I hope he is home resting and feeling better. You too.
THANK YOU goldcap. Yes all of the above. Some health professionals are aware of PSP now, but few and far between. He's ok, scared and sad. And the social worked called with a possibility of some help. Praise the Lord. Everything "we" do doesn't work but we are all HERE trying our best. I appreciate everyone's posts.
BTW. He fell on the wooden coffee table. I felt guilty and then angry because: 2 RN's, 2 Occupational therapists, 4 CNA's and 2 Physical Therapists have been at my house and none of them said to get rid of the table. So I don't feel so bad but the table will be sold!!
I would say Mum is mid stage too and I find myself thinking about what I will do with myself when her battle is done. Then I hate myself for even thinking that and dreaming of this other life. It really does play with her mental wellbeing. I get jealous of friends living normal lives but I also wouldn't change the situation (well apart that Mum didn't have this evil disease) as I do cherish this time too. I try to disassociate myself at times in a tool to cope with it all and the reality of Mum is dying and a damn horrible time of it to boot. Mum has been attending day unit at the hospice for a couple of months now and I really don't know how I remained sane before this. Just having those 5 hours apart are golden.
Friends don't like to come round as I guess they feel uncomfortable so it is lonely. The carers drive us both nuts at times but the are a necessity unfortunately if Mum is to remain at home.
It is a situation I think we all want to flee from and it really does test us to the limit. Bank holidays just rub it in more that there is life outside the front door.
Hi Debbie, sorry to be late on parade, enjoying my respite!
This My Girl, is something you need desperately. Do you get any time off? Are you getting any help yet?
I have just come back from taking S out, before we left, I checked he didn't need the loo, he said yes, so I called the staff. I sat and watched two lovely girls get him transferred, then cart him off. It was a real eye opener, for one, it looked a lot safer, but it took time and effort and two people needed. Yet I do it all the time, on my own. It's no wonder we are all on our knees. Afterwards, one went off duty, the other went for her lunch break. What do we do????
Debbie, we all shout and scream things we shouldn't, at our partners. I am just has guilty as everyone, threatening to put S into a home full time. You say you don't know how to cope, which one of us does? PSP does not come with a manual, nobody understands the enormous pressure we are under. This is why you have reached that point in time, that professional help is needed. You must ring the social services and ask for help. They need to come out and assess F, then they should put you in contact with somebody that can help. I am afraid it's a never ending saga of assessments, but eventually you come out the other side, hopefully with a care package in place. Be it just someone who comes and sits with F for a couple of hours, so you can go out. Marie Curie offer a Be-friending service in some areas, where a volunteer will come and sit. S has a guy who comes and plays backgammon, or they watch the cricket together. It's not in every area, but if you phone this number, they should be able to help or give you some advise. 08000902309 opening hours 8 - 6.
For F's sake, you must phone Social services first thing tomorrow. I know this feels like a failure, but actually it's the complete opposite. If you read the posts, you will quickly realise, the ones who you thinking are coping well, are the ones with a decent care package. Life will seem much more bearable once you can go out and breath occassionally. Talk to the hospice, start screaming and shouting at anyone you can think of, to tell them, you are not coping. See if you can get some counselling as well. I really miss mine, I had one hour a week, where is was perfectly acceptable to cry and say all the things that you are feeling, but it's not PC to express them!
You know you are not alone, you know the terrible things you are thinking, so are the rest of us. AND, just a little bit of information for you - YOU are coping, F is safe and well and that's all that any of us can acheive.
Thank you Heady, glad you enjoying your respite, i don't know what it is, seems I can be feeling fairly 'happy' one moment, but those feelings change in the blink of an eye, I actually said to my daughter yesterday 'do you and N want to go out tomorrow' I'll look after the children! She took me up on the offer, we've made pencil cases and cakes, sitting in the garden in the sun with a 🍷, dinner is prepared, but I don't expect this 'happy' mood to last long, and I cant expect my grandchildren to come round and cheer me up every time I'm on the 'edge' they're only young children.
I'd been out to lunch Friday with my youngest daughter and the baby, so it's not that.
I think more than anything it's the loneliness. I text my stepdaughter yesterday when I was at the bottom of that hole, she said she'd come over on her day off, but I probably won't need anything right there and then! There's just nobody there when your having a melt down and you need them, and that's never going to change!
You are right, there is rarely someone there, when you have a melt down. All you can do, is accept any offer of help, when they can do it, go out, even if it's just a walk for half an hour. I am so glad we got the dog when we did. I am forced to go out. Yes sometimes, I walk crying my eyes out, but that's OK, it releases that pent up stress. Which occassionally staves off the next meltdown for a couple of minutes, by which time, something else might happen to get you through the next five minutes. This day to day stuff is rubbish, I live from minute to minute, even that's too long some days!!!!
hang on in there girl! you need help. is your local hospice involved? if not get reffered asap most have day hospitals don't discuss it with hubby just send him! also refer yourselves to adult services the least they will do is offer you three hours weekly carers leave for free.
i promise you you will get to accept this crap deal, i think it is just like a bereavement you have to visit anger , denial, disbelief and grief often many times before you can have an objective view. i sob every day for what has gone and what is to come , i grab every bit of help i am offered and shoot out the door! but you need help and fast!
Yes I don't think there's a day when I don't cry, whether is in anger/frustration or sadness at the 'loss of my marriage' the life I thought we'd have in the retirement I'd been looking forward too, I doubt anyone understands that except people here. And loosing my Mum in April this year and Dad in Jume last year hasn't helped, although I can accept that they were old and ready to leave, well Dad at least, Mum was a bit more sudden. But sometimes it's all a bit overwhelming.
Oh Debbie Dear, how awful to have lost your parents. I guess your mum wanted to be with your dad. I am an "orphan" as well. It is very difficult not to have those loving arms to hold you and tell you it will all be ok. Don't say only midstage. ALL stages of PSP have their challenges. I think the middle stage was one of the worst physically and mentally. We are just past that. He cannot speak to ask me, no demand, things. He seems more frail and sleeps more. I talk out loud now from the other room so he knows what I am up to. He waits patiently for me to get him up. I used to lose my temper and bring up past grievances on bad days. And ( I am not proud to say) threaten to put him in a care home). Now I am afraid that I will not be able to handle the level of care if his care becomes more than I am physically capable of! It breaks my heart to watch him retreat into himself ( for lack of a better explanation), a little more each day. We have in days and out days. One carer actually prefers taking him out down by the seaside and he returns with color in his face and smelling of salt air! And I no longer feel guilty when I get time to myself without him as I know I will be more loving and calm as a result of the time away. I wish I had friends and/or family close by who understood and were here for me. But then I think I am blessed to have everyone on here who truly gets it. There will be time for making new friends and renewing old acquaintances and visiting family when he is no longer here. I just hope and pray I am not a hollow shell with nothing left to offer anyone. One forgets how to just be living this life for so long.
I will not say stay strong. Just be who you are. Yell, scream, cry if need be. Then dust yourself off and start over. I tell myself," Everything will be ok in the end. And if it's not ok it's not the end.
The load we carry is in the "nightmare" category, isn't it? We just plow ahead, one foot in front of the other each day and often stumble. Just do your best, and don't forget about your own health (is that possible?). It's an impossible journey for us, but we must keep in mind the horror our loved ones are facing in their final chapter. Keep venting and draw strength from knowing you're in good company with those who understand all too well. 💓
My mum often feels the same way.. She talks about how this was supposed to be her time to travel with my father, to kickback and relax, now that her kids are all grown up.
She sometimes also talks of her marriage and relationship and breaks down.. I can only imagine how hard this must be on a wife.
I say to you, what I say to my mother, "hang in there, you will have good days, even if they are different from the ones you dreamed off. I know it's hard but we will get thru this together ( all of us on this group ) and we are not alone."
It is a form of torture to have to care for the shell of the person you lived with and loved. We can't grieve because they are still there but so much has gone, the future is frightening as they deteriorate and then we wonder how we will manage. Its sobering to realise the effect on us but we are doing a job we didn't seek !!
I would recommend counselling. Our hospice offers it.
Your right about the torture!! I'm not suggesting other life threatening illnesses are easy for anyone to deal with, but PSP seems to have so many complications
Reading this post i think of my lovely wife and care giver. I have Parkinson's (in my 10th year) and when i think about the S***t i have put her though i don't know why she stays. We have been married for 45 years. She was 15 and I was 17 when we married so I guess we are like one person. I am retired and in the early stages of PD. Now things are going well i am still completely independent.
I think all of you are the special people of this world who care for yours. But please take care of yourself and take some time away to do it. The person you are caring for is not the person you use to know and never will be. When things are bad roll back the years in your head and see your love one as he or she once was. When i look at my wife i still see her as she was 45 years a go.
If no one has said it lately
I LOVE YOU AND THANK YOU FOR WHAT YOU DO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
These posts are so so so familiar! I feel so alone at times albeit I have my boys to talk to and friends, it’s just NO ONE is dealing with this ALL the time....
He is so childlike, when I get a phone call he stands in front of me asking me question after question till I hang up. He gets up in the middle of the night and shaves and showers, then shaves again at 7:00am. He became obsessed with shaving cream insisting he needed more, he had 8 cans!! Why did he have 8 cans? When any of his friends have taken him to lunch he gets them to stop and get him more!
He continually “throws me under the bus” telling people, Dr.’s, Therapist I am mean and impatient etc etc etc....
It is really unfair to our boys for me to talk to them about how horrible I feel because they just get upset, it IS their father and they feel just as much pain as I do about this disease. The thing that makes me most angry is how much life it is taking from me when I know I have plenty of life to live.....I cry all the time, mostly alone, it’s not fair for me to burden others especially family with my extreme sadness....
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I am always rushing around trying to get as much accomplished as I can when I have help that I often skip eating and come home ravenous without any energy left to cook. Sometimes dinner is just bread and wine but when everything is quiet and he has been bathed and tucked into bed it feels like a feast to me!
How do i cope when Frank loses his temper with frustration?
Not knowing how to stand.
