Where to start?

Hi all,

I have been delaying posting on here for a while as posting on her is admitting that PSP is happening and it isn't going away!!

My dad was diagnosed with PSP a couple of years ago and has had periods of substantial deterioration and then stabilises. My mum is his primary carer and my dad is adamant that he doesn't need respite as all of his needs are being met.... which they are, but my mum is exhausted and I know that we are still at the beginning of a very long and hard journey.

My dad doesn't seem to have any appreciation of the risky situations that he places himself in, he still wants to be independent and has regular falls, resulting in regular visits to A and E to stitch him back up. So the things I suppose I am wondering is, have other people had similar experiences and if so is it just a case of waiting until his mobility deteriorates even further so he becomes housebound?

PSP is amongst some of the cruellest diseases that exist and my thoughts go out to every other person accessing this site as it is a life changer...

Thanks in advance for listening/reading and any responses I receive


40 Replies

  • Hi Hayley,

    Sorry you have the need to join this site but you will get some invaluable advice from some lovely people and even a few smiles along the way.

    The PSP road is an extremely hard and cruel road to take and unfortunately until it becomes impossible for your Dad to be independent he will suffer more falls, it's only when the realisation kicks in that he's not safe to go it alone that the falls will stop. My husband still manages to fall even though I try to be with him all the time, he'll forget and try to shut a door behind him and down he goes! It is common for sufferers of PSP to think they can still do things and therefore put themselves in danger.

    I am in the process of trying to get a respite break and I would advise you try to get one for your Mum, I was almost on the point of losing the plot before I realised I just couldn't go on without a break!

    Keep posting on here, it's helped me a lot through this awful journey we're all on....

    Love and hugs....Pat xx

  • Hi Pat,

    Thank you for replying, Yes I have witness my dad trying to still shut doors and falling too- the logical thinking is no longer present I suppose.

    Respite is needed although my dad is of the opinion that he isn't ready and does not need it at the moment- so it is a work in progress.

    Hayley x

  • Hi Hayley,  Like many of us, you joined some time before you posted.  Now you have taken the plunge you will always have someone to discuss things with from many different countries but all going through similar things.

    My hubby is now wheelchair bound but not housebound.  He had many falls and trips to A&E before his legs stopped supporting him and I thought he was now safe.  That was until he managed to dive off his commode resulting in paramedics having to come and pick him up and once again take him to hospital.

    I answered a similar post recently about respite.  I told my darling that if he wanted me to continue to look after him, I must get a break during the week. I knew if I didn't I would be exhausted and would probably become ill which would result in him having to go to a care home.  I then contacted Crossroads (in UK) and now have two breaks a week from them and he is at the Hospice on Fridays.  I know he would rather I looked after him 24/7 but as much as I love him, I need a break.  Your mum does as well.  

    If the weather is fine, I take him out on the days I don't have a break so it's not just me going out during the week.

    Try to get your mum to seek help soon, for her health, physical and emotional.


  • Hi NannaB,

    Yes I agree, a short break is actually the best option for all parties, I suppose it is convincing my dad of that but we will continue working on it.

    I have not heard of crossroads, I will look into this as a potential first step.

    Thank you x

  • Nanna is right , do try and take a break even for an hour . Get out of the house . I can be really strung up , find it extremely difficult to get out in the first place always so much John needs . I think I have remembered everything . Then I notice his dentures are coming lose . I have to cleanse his mouth and the dentures then get them back in again .

    Then I forget I should have lowered the blind he cannot stand any glare , a drink ready with his thickener . Is he still comfortable in his chair . 

    As soon as I a out of the door I take a breath and forget until I go back in again . I am not getting away from John , I so miss him coming with me . I need to get away from the Parkinsons !!!  I go back refreshed and even feel guilty that I hadn't thought about him .  

  • Hi,

    I can see that my mum is in exactly the same predicament as you outline above. Sometimes even calling out for a few bits from the local shop can be so time consuming. I have regularly heard my mum say even if I have a little bit of time, I don't always have the energy to go and do anything.

    I suppose it is about finding a balance that works best to enable the caring for dad at home to continue as long as possible as I am certain we have got much worse to come yet.


  • I too find it difficult to have a break but make sure that I at least get a quick coffee with friends, I try to arrange early so that Ben is in bed. I take the paper to him, leave the iPad with him,, make sure he has used the loo, check he has his lifeline emergency call out around his neck and on his wrist, mobile phone by his side and then off I go for an hour. He has just agreed to go to the day centre at the hospice, first visit last Tuesday and I sobbed in the car when I left him but he was happy enough when I picked him up thankfully. I didn't leave him for the whole session but he did have lunch and chatted with the staff and has agreed to a couple of the things they have on offer. I know eventually I will need help in the home at some point but at least he is beginning to realise I can't go it alone. I hope that your Mum soon realises that she can't keep going without a break and hope that she can get help as soon as possible to help her to recharge her batteries and enable her to cope on this long and difficult road called PSP. Good luck and hugs. xxx

  • Thank you Katiebow, it is a constant worry for all of us as I can see in your post. Recharging her batteries would be good and I will try to encourage this more. x

  • This may make him think differently if possible. Steve wouldn't go into respite as he tried for three days and didn't like it. However he was warned by everyone that if I didn't have a break he could end up in a home permenantly. He didn't take any notice and two months ago he went into a nursing home which he really dislikes and wants to come home. The sad thing is that if he had only taken the advice above I would have been able to carry on a lot longer as I noticed the difference in my health after a couple of weeks and now feel so much better. I feel so sorry for him but sometimes think that its his own fault.  

  • Oh Showaddy, I know where you are coming from.  S has been into respite and was quite accepting. Is happy to go back. He has taken to having care in place at home.  My problem is the lack of communication. He just refuses/can't respond to me anymore.  Expects me to anticipate his every need, immediately, which I can't!  He can do it for the Carers, so why not for me?  Last night, it was obvious he was in pain or uncomfortable, tried to find out what, but I just got pushed away. Put him to bed, refused point blank to be pushed into the bathroom, feet planted firmly on the floor.  This sort of behaviour is upsetting for me and downright dangerous. I am coming to conclusion, that he would rather be in the home, than here with me!

    Lots of love


  • Hi Heady.  I don't suppose he'd rather be in a home than with you but he may have realised how hard it is for you having him at home.  It's not quite the same but years ago our eldest son went travelling around the world for 10 years. About every 18 months - 2 years he would come home for 2-3 weeks.  For the last few days before he left again he would be awful; arguing with us, leaving dirty dishes and clothes all over the place, coming in late etc.  Years later he asked if I remembered what he was like towards the end of a visit.  He then said it was so hard for him but he knew we would be so upset when he left that he was as obnoxious as he could be so we were glad to see him go and it would be easier for us. Of course it wasn't but at the same tie was a relief.

    Just a thought but maybe S is thinking something similar.  If he has to go into respite, he wants to make you feel better about leaving him.

    Or I could be talking a load of rubbish.


  • I understand what you are saying.  I remember someone telling me, years ago, when my teenage son was going through his "not very nice phase!" that males haven't got the courage to leave on their own, they have to be kicked out!  Hence his bad behaviour. I suppose S could be doing the same and the feeling is exactly the same, it bloody hurts after all I do for him!!!  Knew this week wouldn't be easy, after two weeks off, I just wish he could at least smile at me, once or twice.  He can for others, what's wrong with me?????

    Lots of love


  • Nothing is wrong with you Heady. It's hard doing all you can to make someone's life more bearable when it doesn't appear to be appreciated.  You don't expect thanks all the time but a bit of respect wouldn't hurt.  I've never felt like that with my darling man but certainly did with my mum and dad and it hurts.

    Sending you a big hug.



  • Thanks NannaB! Was feeling very low yesterday.  This morning the sun is shining and although I was woken at 6.30 with S falling out of bed, the world seems a better place. It maybe because I haven't had loads of people tramping through the house.  Life will have to be at rock, rock bottom, before I start letting Carers in at the weekend.  S doesn't need a shower every day, does he?????

    Lots of love


  • No he doesn't. I love Saturday evenings when we have the house to ourselves. I usually get C into bed early while I still have the energy to get him undressed and manoeuvred. I sometimes even get to bed before 11pm, not often though but it is so nice not having someone else here.  Saying that, I couldn't do it on my own all week.

    I hope S had a soft landing. Has he got a grab handle on the side of the bed.  I moved C's further down the bed so it acted as a guard before he had a complete side guard fitted.

    Hope the sun keeps shining on you. We have bits of blue sky, lots of very thick grey cloud and a very cold wind.  I'm going to chill out today, between caring duties, and paint a picture. The housework can wait, and wait, and..........


  • I have got our regular supermarket trip to look forward too.  Think we will go to Waitrose and have coffee as well! Certainly know how to live it up, down here in the south west!!!

    S seems to be OK, face a bit bashed up and shoulder probably will bruise.  We have got a grab rail, but haven't put it back on, after taking to the respite Home. Was hoping a family member would pop in and help, but I had better do it myself, before bedtime!

    Lots of love


  • Never, Bev !!!

    Its well recognised that creating tension is a way of coping with separating. Feeling angry is a way of dealing with pain. Its a wonder we all do so well really !

    I am really struggling with these issues at present as Chris seems so selfish and disregarding me.

    Like Heady its hard feeling I'm made into a "non person ". I keep trying to understand but it doesn't always work.

    I am investigating respite at the hospice. I hear that Tim says to look at nursing homes now but I'm not quite there yet.

    love, Jean x

  • It's so hard isn't it. As I said to Heady, Colin has never made me feel like that but my mum and dad did over 20 years.  I'd help them out nearly every day after work ( and often before) and at weekends with no appreciation then when my brothers called occasionally it was like the prodigal sons returned with me having to prepare the fatted calf.....we'll make the tea, while dad laughed and chatted to them.

    I hope your investigations at the Hospice work out OK.


  • My mother and her sister had exactly that experience with their brothers. I only have sisters and my parents were not too dependent. Nowhere near as Chris is already.

    Chris is always loving and appreciative but sometimes either doesn't hear or cannot respond for a while. I am still struggling to accept the loss of conversation as he was a very lively conversationalist.

    I get angry because it leaves me feeling like a non-person. I admire the way you have made the best of things. I often find I am spending precious free time doing grocery shopping. I must be more pro-active in doing things for me, as I feel I am losing my identity. I don't want to be "only" a carer.

    Sounds self-pitying.Won't do.

    Lovely sunny day. Going over to daughter for dinner. Seeing son and grandson tomorrow, treating them to " James and the Magic Peach "

    Have a good weekend.

    love, Jean x

  • Sounds as if you are going to have a lovely weekend.  Enjoy the meal and the show.  Your grandson's reaction will be a good to watch.

    I chatter away to C all day with no response. He used to talk to everyone and welcomed folk into church for 17 years as he was so good at making people feel wanted and at ease. Trouble is I'm talking to myself when I'm on my own as well.


  • Its so sad to think of Colin being so chatty.

    I find it hard to talk without a response. I can talk to myself though. My little grandson used to say " why are you laughing , grandma ?" in the car. He felt quite comfortable to hear I talked to myself, as he did !

    It was great watching all the children enjoying the show.

    love, Jean x

  • Tim is right, if you find a good nursing home that takes people for respite, it will get Chris use to that home, so if you feel you can't cope, it won't be such a shock.  S went back to the same place for his second time at respite, all the staff knew him, knew his ability to fall at any time.  More importantly, S felt at home and was relaxed. I have been told he can go there for respite at any time. At the moment I will keep it to every couple of months, but as time get harder it will be increased, until there comes a day, I won't bring him home.  Some how, this feel right for me.  I have that much needed escape clause, whether I ever use it, is another matter. Yesterday, I felt it would be any day, today, well, sometime whenever, but S isn't up yet, so who's what today will bring!!!

    Lots of love


  • Sounds sensible. I've always been sensible, Heady, but feel resistant.  Is it very costly ?

    I am beginning to re-frame it as being his holiday !!!

    The idea of escape clause makes sense though. I am going to talk to the hospice first.

    Hope things go well for you today. One day at a time, I think.

    Its only a year since you were in S.A. isn't it ?

    We had a lovely holiday about 6 years ago, Namibia and Cape Town. I can just picture those beaches and warmth !!

    Memories. Thank god for them, eh ?

    love, Jean x

  • Hmmm...very interesting, NannaB. Practical psychology of the finest kind. 

  • no nanna b you never ta;lk  rubbish¡!!

    l jill


  • Hi Heady,

    The difference in behaviour can be remarkable can't it. My dad's behaviour can be awful towards my mum (short tempered/shouting) but with other people this can be minimised. Dad states he has no control over this however, I am sometimes not sure?!

    It sounds like you are used to having to deal with tricky situation with S, good luck and keep up your hard work.

    Hayley x

  • Hello Hayley, my dad sadly passed away last month after his battle with PSP, he was also determined and even after he had been in a wheelchair over a year after breaking his hip and just a month or so before he passed he attempted to get up out of his chair!!! And then his bed with safety sides on!!!! I think I he found some inner strength for his final fight. It's a strange and cruel illness. You must encourage your mam to get help and respite as this journey is difficult and you and she will need all of your physical and emotional and spiritual strength. I wish you all of those things and more and use this site it has and still does give me some sense of peace and support. All my love to you and your family xxxx

  • Hi,

    I am so sorry to hear your dad passed away. I can completely identify with what you are saying, my dad uses his wheelchair on particularly bad days at the moments but even then he will suddenly decide that he wants to walk which doesn't always end well!!

    I think it is easier for me as I see my dad 4 times a week so any ways in which I can help are ok and any outbursts due to sheer frustration are manageable as I go back home at the end of the day. But for my mum it is 24/7.  I agree with the needing physical, emotional and spiritual strength- so very true.

    Thank you xx

  • Hayley as NannaB says you need to get your mum help.  Crossroads are great to find your local one go to Carers trust website, crossroads part of them.  They can provide a sitter for a few hours a week.  Also get your mum to contact her GP to be referred to Marie Curie Nurses who after assessment may be able to provide a     night sitter for a couple of nights a week mum can then sleep in spare room without having to bother with him for a night.  If not yet on or in need of CHC get your mum to contact local social services who may be able to arrange a daycare place for your dad.  Then start looking for your local hospice to see what help they can provide again will need GP referral.  On longer respite you will need to go round nursing homes (not residential care homes unless have nursing staff always ask) to find one or two in your area that he and your mum like tell him it is for future need and doing it so he has a choice now before he cannot choose.

    Good luck to you and your mum you need help now before he really hurts himself.  Tim

  • Hi Tim,

    Thank you for your reply, I am showing my nievity here, are the Marie Curie Nurses trained to deal with PSP specifically? Maybe this is irrelevant? I am aware the my dad is up numerous times in the night and can become quite disorientated, also his mobility can be quite poor first thing on a morning as he has been off his legs. If a night sitter was available I believe this would make a huge difference to mum as a night of undisturbed sleep would be great- I will follow this up and discuss with mum and dad.

    Thanks Hayley

  • Marie Curie nurses or healthcare assistants are not specifically trained in PSP but deal with all terminal illnesses no longer cancer.  They will ask at the assessment what is condition and symptoms and how to deal with them.  You can ask for men only if he would feel better.  They provide night sitting between 2200 and 0700. I used to hear M but was able to roll over back to sleep as I knew the MCN was there for her, though it did take a few visits.

    Good luck hope your mum can get some relief.  Tim

  • Hi Hayley,

    I had the same reaction from my husband when respite and a day centre was mentioned by the GP, P said he was fine but the GP told him it was to help me. That made him stop and think and he agreed to go - very reluctantly - however he did get used to going regularly, although to say he enjoyed it is probably stretching the truth a bit.

    Please try to explain to your Dad that your Mum really needs a break in order to continue caring for him and hopefully he will come round to the idea. Good luck.

  • Hi Hayley, what has kept you from joining the best site on the Web????  As you have been reading, we will let you off!  All my knowledge has come from this site, professionals are useless, well, most of the ones I come across!  Ask any question, any time, no matter how trivial you think it may be.  There are lots out there, just reading, like you use to, not knowing anything about PSP, longing for answers. We will try and help or at least point you in the right direction to find a solution.

    I'm afraid days of being recognised down at the local are gone, it is A & E that we all know our way around now!!!

    PSP is the cruelest disease around, mainly because the sufferer does not feel that there is anything wrong, nothing is!  It's the neurons that take the messages around that have gone haywire! Hence the non acceptance of the illness.  This is extremely hard on the Carer, your Mum.  She needs help, time off, room to breath. Somehow, for your Dads sake, as much as your mothers, you have to get him to realise, if she doesn't get a break, he WILL end up in a nursing home, sooner rather than later.  Get in touch with your local hospice.  Most offer day centres.  They are brilliant. Please don't be put off by the word, hospices are to help people LIVE with life limiting disease.  They will look after both your parents.  Your Mum will get no end of support, if she wants it. Your Dad will have reason to get up in the morning and Mum will get that break!

    Is your Mum on this site?  Get her to join if not, it's invaluable, knowing you are not alone, going through all the €$¥% that we have to on a daily basis!

    Lots of love


  • thank you for explaining the reason why the condition is not recognised, my husband has CBD and says there is nothing wrong its all part of the aging process, I had trouble understanding this. x

  • Thanks for your words, they all ring true.

    Mum is not on here yet, although I am sure she will be soon, I am feeding back to here everyone's words of support and advice. It is so nice to feel as though everyone understands without having to explain the disease.

    Thanks again Hayley

  • Awe God heady

    I totally get you!

    If dad doesn't agree to respite (yes it's still going on) God knows what will happen...

    We've had a bad day today....I'm so tired but dad wants to stay up.....

    God help us all, failing that drink wine 💋

  • Oh yes, lots of wine............

    Lots of love


  • Hi Hayley, as everyone else has said, it's so important to have a break, my hubby is in a nursing home for 2 weeks while a care package is put in place, I was on the brink of totally cracking up before he went, nearly one week on and I am just beginning to relax a bit and found it hard to wind down. I am visiting every day and it's a lovely place and he seems happy there, he can barely speak now but he touched my face yesterday and said "better" , I think he meant the permanent tense expression has gone!  Wishing you all the best in finding some help, we have Macmillan Pallitive carer visits once a week for a few hours and the offer of a night if needed. xx

  • Maybe the hardest thing for the PSP-sufferer is acceptance, of their growing limitations, their lost past life, their lost future, of having to ask for help for nearly everything they do. Until then, accidents will still happen. There are always other little accidents though ;-) My dad is very patient and introspective, has with regret accepted his limitations but then sat where he 'thought' was a chair because he hadn't switched the light on. We managed to have a laugh about it together (after checking he wasn't hurt of course!).  

    Wishing you, your dad and your family a lot of courage - 

    Lieve x

  • Hi Hayley, like many of us we joined up sometime before we posted on here. My Mum has PSP and the situation sounds quite similar to your Dad. A close friend of my Mum is her carer and has moved into her house to care for her. She has had falls and is often in A&E being stitched up. She has exhibited some similar seemingly selfish behaviours in terms of her needs being more important than her friend.

    My Mum was referred to local hospice who offer a free weeks respite care. Basically we found we had to be quite tough with her and spell out that if it wasn't for her carer she would be in a home. That seemed to do the trick.

    PSP is hideous. Encourage your Mum to join a carers group for extra moral support.

    Steph x

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