What can I say? Totally overwhelmed by the response to my previous post. Thought it would be easier to send this post, hoping you all will read it!

Yesterday was hard, I felt a failure, I had wasted precious time, feeling sorry for myself. I was not in control, just floundering around. I never use to be like this, I never thought I was a control freak, perhaps, I was never allowed to be! Now, I have to know and be in control of everything. It's so tiring and certainly not relaxing.

Thank you all for your kind and wise words. I do KNOW what I should be doing, but sometimes to just impossible to actually do it. Peter Jones - don't worry, when I said, "is it worth it." I meant having a carer come in!!! Although I do fully understand, when couples decide to end their lives together!

Next week, I will plan my time off. I will set the alarm on my phone, (if I have remembered to charge the damn thing!) My main problem for a lot of things I could do, is traffic. I live right by the M5, which becomes a car park on Fridays, so all the local roads are taken over by rat runners!!! Still I will overcome, don't know how, but I WILL,!!!

Thank you all again for your support. I still can't get my head around how good this site is and full of such wonderful people. Another soul saved to be able to fight PSP today!

Lots of love and thanks


19 Replies


  • Well Done Heady, We just pick ourselves up and continue no choice, but it is good to be able to tell people who know about PSP how you feel, and listen to their replies. We are all here for one another. Take care of yourself, and plan next week.

  • Oh hun try not to be too hard on yourself i was always the organised one especially when i was a single parent then i met Brian and he was so laid back he was almost horizontal so i organised him house kids and animals. Now after all these years i seem to berate myself because i don't seem to have time to be organised. If i get any free time it takes me all my time to decide what I'm going to do with it that i miss the opportunity to do very much with it.

    i seem to take the one day at a time to extreme now and just bumble along in my own sweet planet. Big hug from me. Janexx

  • I remember I stopped on a beautiful bridge out in the country that my mom and I would stop and look out over and talk. I had just quit my teaching job to become a fulltime caregiver. I was not totally convinced that my husband's falling WASN"T just to break things such as the furniture or the commode or the walls...was he doing it as a passive/aggressive way to get back at me and what did I do to him? I just got out of the car and screamed SO LOUD the cops came to see if I was was a cleansing scream and though sometimes that feeling creeps back in, I know that B isn't doing it on purpose. I try to keep everything in perspective and like I wrote to you last time, YOU Heady have written things I can take strength in and become whole again. I have been on this sight about a month now and people around me can tell a difference in my joy factor. So thank you to you and everyone in this community. And my dear when you're feeling blue let it out . and discouraged? look in the mirror and remember the encouragement you give to others.....You have purpose ....


  • What can I say! But a huge thank you (again) I had thought my purpose was just to clean up after my husband. We have been fighting incontenence now for about two years. I think we have finally given up, well I hope he has! This morning has been the final straw. Just wish I could find some pads that work for more than 5 minutes. Tired as well, S took a tumble at silly o'clock, has got a lovely weld on his back, to match the one on his arm, bum, etc. etc.!!!

    Oh well, onwards and upwards. A day of ironing is beckoning. Oh the joy of life!!!

    Thank you again for your kind words, nice to know that I HAVE been some use to someone. Often think what I write is a load of trite nonsense, easy to write, but extremely hard to actually follow. But hey, we get through the day, so some of it must work!!!

    One day at a time

    Lots of love


  • B has started using elbow pads, knee pads, and when coordination is really off, he has a skateboarders helmet. it's light and airy and will take care of minor bumps on the head. Again, all I can say about things you cannot seem to find on your own is GOOGLE it. There are so many adults who cannot attend to their own toileting needs. I had a couple students who had adult size diapers. They held up wonderfully for several hours. I think we changed them twice daily. They did not have a rash, so I know they were keeping them dry (except pressure blisters and got rid of those by giving them exercise outside wheel chair!) Anyway do check online go to disabiliy "stores" just type in adult diapers and see what comes up! Good luck Darlin and don't give up we're all here doin the same damn thing. I like what Rollie said, Keep God in view"

    "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God" Phillipians 4:6 ...I can do all things through Christ who strengthens me Phil 4:13


  •,s like swimming in shark infested waters with your loved one on your back....always (mostly ) a controlled panic,keep God in view,you WILL survive,love Rollie

  • I know I will Rollie, don't have any choice!!!

    Lots of love


  • Heady you're doing such an amazing job of caring for S. Ding ever forget that, even though it's easy to when everything gets on top of you. I'm caring for my mum and i sometimes feel like I'm a constantly angry, impatient ball of fury, frustrated when mum has a tumble, exasperated when she gets up to wander aimlessly for the umpteenth time, biting my tongue when things get spilled or pads need changing. But if I wasn't caring for her where would she be!? We have to remind ourselves of all the good things we are doing and try not to dwell on things we wish we could do better. Shout, cry, wander aimlessly around supermarkets.. You need to let your sadness and frustration out. And you need more than two hours to yourself! I know the feeling checking the time constantly, you should be able to receive much more help than that so you can have some time to be yourself and not 'the carer'.

    I always enjoy reading your posts on here, especially because you're always honest! it's not easy, it is upsetting and frustrating and I can only imagine how hard it must be to watch your partner suffer and feel yourself suffer too. Ask for more help, spend your free time doing enjoyable things like shopping, yoga, relaxing walks, coffee or wine with friends, you need it for your sanity! I'm also seeing a counsellor just to have someone to talk to who's removed from the situation. It's good to be able to talk honestly, as we can on here, and Mind offer very reasonable subsidised sessions. keep smiling, have a glass of wine and remember how strong you are. Enjoy the rest of your weekend :) x

  • Hi Kelly, you are so right! We all get bogged down and forget, don't even realise, that what we are doing, is making a difference. Everyone on this site IS doing a good job, we wouldn't be on it if we weren't! That's why we come, to relieve the pressure, get help and advise, that we can't find anywhere else. I know I need more help, desperately trying to get Crossroads involved. Did have an assessment, they promised the earth, now I want it, nobody is at home. The girl who came to see me is off sick and nobody else is dealing with emails and they never answer the telephone! There is a Carers course coming up, that I am meant to be attending, but I have no information and no idea where I can go to get it!!!

    Oh well, I suppose it will come out in the wash!!! Nearly wine time!!!

    Lots of love


  • Yes exactly! We care so much we even spend our spare time reading and talking about PSP. And our loved ones know that, even if they seldom show it (well, my mum rarely does!) but then it must be so difficult to admit how reliant they have become.

    Which county do you live in Heady? Have you contacted anyone from the personal health budget team or continuing health care? They are the ones who assisted with setting up a care budget for my mum, which has been essential!! And I now finally have a few nights overnight relief, I stay in the house but don't have to get out of bed each time mum needs the toilet or a wander.

    Is the carers course with the county? AATL also provide carers courses, we paid for it using the personal health budget.

    Have you looked into day centres too? Age UK and several charities like Sue Ryder etc run lunch clubs or activity days so you can have few hours to yourself. There's usually quite a few different options, just a case of finding an appropriate one. They may cost around £15/20 for four hours visit including lunch but money well spent I think !!

    If there is anything I can do to help Heady then please don't hesitate to ask! I've spent hours reading up about all sorts of PSP related things. Im also quite actively involved with PSP association a d find their meetings and help useful.

    Oh and I'm already on the wine!!! ;) x

  • Hi Kelly,

    We are in North Somerset! S goes to the local hospice once a week, on a 12 week course. Started his second course last week! We do go to our local PSP group and Jane from the PSPA phones regularly.

    Think my main problem is, I stopped!!! We spend so much time rushing around, we become numb to our problems. Then when there finally is a couple of minutes spare, everything comes flooding in and over whelmes you. Going to plan this week's time off. Hospice day is sorted. Just got to find something to do on Friday's 2 hours off! One thing is for certain, I am NOT going to spend it crying!!!

    Lots of love


  • Hi Heady so glad you are feeling better, I think we all get so tired, I now I do sometimes feel like running away, but as everyone says one day at the time, we have come away to the Cotswolds with all the family, which I was so looking forward to, but has been a bit of a nightmare, just want to go back home, love and hugs to you Yvonne xxx.

  • It's hard isn't Yvonne. Spent a weekend away with my children recently. Think S and I spent most of it in the loo! Go for a quick coffee, turns into a two hour marathon! Never got to have a chat with either of my two. Still, at least they were there, the surroundings were different, wouldn't have missed for the world. Think we just have to accept, that this is the ways things are going to be now. Although it's hard, I would rather be out trying, than sat watching another loop of Sky News!!! (I THINK!!!)

    Lots of love





    lo;l jill

    hugs and xxx 2 you an d George

  • Hello, Heady, Just got back from an internet free week in Yorkshire, so missed your earlier post. Glad you have recovered your balance a bit. The truth is that when we have the space to be on our own it also makes time for the reality of our world to hit us, doesn't it ? What we really want is for it to be as it was. We want him there, as he was. Even if we then used to argue !!

    Space opens the door to all that pain and it needs to be done, in bits. We need to allow the anger release. THIS ISN'T WHAT WE EXPECTED.

    It is good to have time alone and we always had separate times. Weren't glued together but we've been permanently torn apart. It makes "my time " feel different now.

    Takes a lot of adjustment.

    I also find I have become a control freak. I never was but my world feels so uncontrolled now !

    Just finished my second gin and tonic, after driving back to London from Yorkshire. Better stop !!

    love, Jean x

  • I hope you stopped to refill your glass!!! You need it after that long journey!

    Thanks for your comments. Wouldn't it be lovely, NOT to have to learn or come to terms with something new, even for a few hours!!!

    Lots of love


  • Yes !!! I'm fed up of being grown up and sensible !!

    Might get drunk . Oh no !! too aware of responsibilities !!

    Can't change !!!!

    love, Jean

  • Wouldn't that be lovely! Problem is, my drinking partner, chokes and splutters on his wine these days, so not much fun!!!

    Lots of love


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