Very upsetting day

Our day started well, G had a reasonable night, so for a change I got up not feeling tired. The phone rang asking me. If I was free for someone from Social services to visit, I said at what time , our community Matron. Was calling at 11.30, that will do I will come then. They both arrived together, she knew he was coming.

Seemingly she was consernd about me, they had been having an office chat.

I don't have any help with G I CAN MANAGE, I have good Family backup.

The conversation started with the man from the social telling me all the help I could get ( I knew what I could get I just don't want it ) G gets very anxious around strangers so carers coming in would upset him. He explained we would be means tested and he would need bank statement s also if we had paid help we could then apply for C.H.C.

I said I would think about it. But why should I pay £14 an hour for a P.A .We chatted about G who very politely nodded off.I thanked him for coming and he left

The community Matron senced I was annoyed ( she is very good and I like her) she said don't get upset , he is only doing his job she asked me to think about what had been discussed, I thanked her as she left.

G was still asleep,I went into the bedroom and cried this deceise had finally hit me

I was thinking about it for the rest of the day and most of the night, how stupid is that I have always been a very logical person but this illness came we moved house to be near our children and left good friend behind,so thi morning I phoned P.S.P.A I spoke to a wonderful lady who listened, and listened and listened

Tonight G is tucked up in bed I am having ME time, so three cheers for the P.S.P


20 Replies

  • Dear Ellie,

    I think your post explains fully what we all go through in the early days, the feeling of intrusion from strangers into your home, the fact that you want to do everything by yourself, then the acceptance that you do need help, you can't do it all on your own!

    I was just the same, Keith is a very private person and I was worried that he wouldn't be able to deal with all these strangers looking after him and I felt incredibly guilty for even allowing them into our home!

    But now I am so thankful for them, they are almost like family and they treat Keith with the upmost respect, I think he is even quite fond of them and he trusts them which is so important and they in return think the world of him!

    It's perfectly normal to feel like you do now, it's so overwhelming in the beginning, but you will come to accept that you do need help, we all do, if we didn't who knows what a mess we'd be in and that's no use to our partners!

    Get some me time whenever you can, it's so important to keep you strong and to be able to cope with the trials of these illnesses!

    Take care, love to you both....Pat xx

  • I hope you get a good night's sleep and feel better in the morning. I said to someone a few days ago, you don't need to pay for help before applying for CHC. We didn't have any help apart from day respite at the hospice. If you haven't involved the hospice yet I would advise you to do so as it was they who started the CHC claim for us and as they had got to know C, they wrote a report telling the panel how it was.

    For a long time I said I could manage, and did, but oh how wonderful it was when we got the support from Crossroads and after being awarded the CHC. We still have terrible days of course, that's PSP, but most of the time I feel human, have lots of outside activities, some of which C comes to in his wheelchair and some I go to alone, getting sitters in. After nearly 3 years struggling alone, it took time for me to adjust to other people coming to our home and looking after C but admitting I couldn't do it all by myself was the best thing I did. Having lots of fun and laughter with friends helps me cope with those many grotty jobs we all have to do.

    I'm so glad we have the PSPA as well. The local support group we go to gives us a chance to meet others going through the same things we are, although C is further down the line than most of those we meet.

    I hope you've enjoyed your Me time and have something to laugh about over the weekend.


  • Thank you Pat, NanaB I asked our cmmunity matron about taking G to a Hospice for restbite care she said he couldn't go because he wasn't in need of palliative care ?


  • When C started going to the Hospice day centre, he was walking, talking, eating normally, was not incontinent. I wouldn't have thought of the hospice if I hadn't heard about it here. Before I thought it was only for people nearing the end of life. I was wrong. I went to see them with C and they said the referral had to come from our doctor but he should be eligible as he had a life limiting illness. We managed to get an appointment that day and 3 days later someone from the hospice came to see us and he was accepted straight away for 5 hours every Friday. Initially he had 12 weeks there, then a 12 week break and then back again. As he deteriorated during the break, they have let him go continuously since then. Hospices may not all work in the same way but if you have one not too far away, why not give them a ring and describe G's condition and see what they say.


  • jhon also whent hocpice loved it all psp suffers and anyone with terminaly ill as well

  • Hi, good to hear from you. I hope you are coming to terms with what has happened and are discovering life after PSP.


  • as for coming to terms im not i have been campaining about the care support for psp suffers and why it is not in the crelikiam i went to a meeting for psp and they were lovely i saw there struggels and told them what i was doing they wished me luck i feel that we have all suffered with this yet nothing being done i have been told that i am the first to have it put on the death certificit i have heard from parliment so i will be going ahead till somthing is done about this as i said jhon was at the hocpice on palative care was then told he could not go anymore as there was a waiting list he felt very sad about this there needs to be somthing put in place for psp suferes they are now changed direct payment it has gone to private sector this concern me as it takes away our choice of who we wont to care sorry if i am ranting on nanna b but my pain hurts and i was never giving support as every person who came to my house would say i dont no anything about psp also hospitals i no this sight is for psp i you might thinck that im going on i will apoligise for that

  • Don't apologies Laila. I can hear the hurt in your words. Thank you for what you are doing to educate people about PSP and to get more help for those suffering and their carers. I think it is a post code lottery at the moment. As a family, we have had a lot of support from Social services, the Hospice, neuro rehab services and district nurses. Unfortunately, at the moment, research hasn't been able to find a cure and I hope and pray that one will be found. Too late for many but needed for those in the future. All I can do now is help with symptoms and make every day as enjoyable as possible for my darling man and raise money to help with research.

    Keep up the good work. We all have to deal with grief in our own way; I hope you have friends and family to help you do fun things not connected to PSP sometimes.

    Sending you a big hug.


  • thanck you for your kind words i no each day i somtimes become bitter each picture i look at and what this cruel illness has done i just wont what is right for them suffering if i can make a changhe i will in memery of my love i will stay on line so that i can bring any good news to you all you all are amising in what you do thancks for lisening

  • hiellie

    i agree with what nanna b has said in her reply the hospice has been great fr me in all s0rts 0f ways

    a) the activities they do are great inc relaxation and massage and other thing s like talks

    B( the hospice were instrumental in getting me my CHC funding ( i had been turned down once

    c) they offer religious support in an excellent way if you fee4l u need that too

    d( the `volunteers staff and patients are all great and i agree iwtj ur `CM that it can eb seen as for palliative care only nbut they do much more than that!

    ]lol jill\


  • Hi Ellie

    I was like you i never wanted to have carers in nor did my husband in fact he refused point blank to carers. I also have my family living close to me.But one day when i was moving my husband a pulled a muscle in my chest so i had to admit defeat and have them.and i must say we have never looked back.yes when they first started coming in it felt intrusive and we had a few niggly problems but that has all been sorted out husband is now bed bound so they come in 4 times a day and they are a godsend.I dont feel stressed out anymore.and we are now enjoying each others company again.and now and again his sense of humour shines through.

  • Hello, Ellie,

    Its so hard feeling you are losing control of everything, isn't it ? I have realised that over the last year I have been anxious about things I never used to and recognised that, as there is no sense to PSP, I am trying to control everything else.

    I am managing too but realise that I am disappearing as an individual. My whole life revolves round being aware of C and his needs.

    I am also aware of tears always ready to fall. I feel I am drowning in sadness.

    So, I need to organise leaving C and treating myself. Like you I will at present call on friends and family but a time will come when professionals will be needed.

    C goes to a day centre at the hospice every Monday. He loves it and they are all lovely there. They also have drop in and chat sessions. Look it up for your local one.

    Hope you have a good weekend, love, Jean x

  • Hi Ellie, I looked after Margaret for 3 yr (2 after diagnosis) without much help though I had help from local Carers Trust who provided a sitting service a morning every fortnight and the "local" (well only 2 hr drive) PSPA group every quarter.

    I thought that we were doing fine and did not need help, even though I was getting very tired and she was becoming less mobile and communicative. Then catastrophe, last October while taking her to the toilet she fell away from my grip smashed her head on a radiator and broke her arm. The NHS and social services descended en-mass from being on our own one day, the next we had carers twice a day, district nurses calling twice a day, GP home visiting weekly, social services daily check. They arranged for Marie Curie nurse to do night sitting initially once a week but now 3 nights a week.

    I was angry with all the disruption but eventually thankful for the help. Initially I was afraid they might take M away from me as they thought I had hurt M on purpose, luckily very quickly dispelled and apologised for. They also put M into our local hospice for day care once a week for 12 wks which I wish I had known about earlier but who tells you these things when you are running to stand still as a full time carer.

    I know it is hard to accept the help and disruption and it does take time for the patient to adjust to strangers doing the help but as one very nice and direct District Nurse said they only see M for a total of 1 hour a day the other 23 you are her life line and support. I, one year on, cannot believe I was doing so much without support I now am very thankful for all they provide and rarely have to kick off about the care. Yes, M has got more needs now but she and I think we have the correct balance between independence and support. That is until M decides to have a bad night, like last night, when I wish the night sitter could be every night.

    Sorry to ramble, the main message is for your own sanity and health, you and G need to accept support before it is forced on you after an incident. Best of luck Tim

  • Hi Ellie, we all know exactly how you feel. I thought I could cope, but PSP had other ideas. So now I have a Carer coming in one day a week for four hours and she showers S as well. I have just CHC, they are in the middle of trying to get me more help. The turning point? I crashed, a few months ago, life came to a stand still, I couldn't go on. My daughter came in to look after S and I went to stay with my sister! After that I knew I had to get help! S suffered big time! Seeing me in such a state, knowing it was " his fault". Well, I need locking away, to have caused such pain! Whats the saying "pride comes before a fall". Please be aware of this and accept help before it's too late for you!

    As for the Hospice, they are there to help people LIVE with life limiting illnesses! Not just a place to die. S goes to the day centre, on a 12 week course. He has just started his third one. He loves it! He CERTAINLY was not the sort of man that you would have thought would benefit from this!!!!

    I am sure you are well aware, that you will need to get help in, at some stage. It's great that at the moment you can cope! But for your husbands sake, as well as your own, don't leave too late.

    Lots of love


  • Hi Ellie

    I agree with Heady and NannaB. You have to start thinking of yourself as well.

    It was very hard for us to accept help, Social services allocated 3 hours a week for a sitter to come in, we now use the care agency that is connected to the hospice. The hospice takes G for 5 hrs on a Monday, initially it was for 12 weeks but have continued to keep her on a Monday, we are now on week 30 something!

    GP referred us to the hospice and they have been brilliant, as soon as they took on G they saw I wasn't coping (I have my own health difficulties) and have been drip feeding the idea of respite care to G, it took 9 months but finally a couple of weeks ago G went into a care home (having had a trial weekend a couple of weeks earlier) and I went and stayed with my parents in Madeira, it was a break I really needed but hadn't known!

    Since coming home I've realised just how much I do for G and that it's not helping me. I saw the counsellor as the hospice on Tuesday and was told very directly that I now need to think of getting help the washing element of care. I then had a meeting with the day care Sister who said the same. That afternoon I saw my GP who said exactly the same, warning me I run the risk of paralysis if I continue to hurt my neck. That was a wake up call for me so have been in contact with the care agency and we are in the process of getting someone in 3 days a week to wash G. We will have to pay for this as the Council have said we don't qualify for care funding.

    The Counsellor also pointed out to me that it was not my "job" to care for G and what would 45mins a time take out of our time together?

    We both hate PSP, I can see a weekly deterioration, G doesn't want to know anything about the disease which makes life a tad more difficult but take each day as it comes.

    Do please accept all the help you are offered, believe me it will do you both the world of good.

  • I echo your thoughts and feelings. I found it very difficult to accept strangers coming in to help P, and he certainly was not the kind of man who I would have expected to accept personal care from young women or men ! Yet, one year on, it has become the norm and I know P would not still be here at home if it wasn`t for the help we`ve had (had to pay for everything though).

    I had a diabetic check at the GP surgery this week (P is in respite for a week) and the nurse talked to me very honestly and sincerely - she said the GP, Community Matron, and those staff who dealt with us there had all had a meeting and were concerned about how to tell me that they thought I had already gone further than anyone had expected and they were seriously worried about my health and thought it was time to plan for P going into permanent care imminently. It was a shock to realise that they were all aware of how bad he is and how tough it has been because I don`t ring the surgery every week, only when we have an emergency of some sort. I felt quite emotional afterwards to think that someone was actually concerned about ME !

    I then had a call from our social worker the next day (never met her, just spoken once on the phone a year ago !) This may have been prompted by the fact that I have appealed against the decision to refuse CHC for P because the gist of her call was to tell me I needed a financial review !!

    Why do we have to fight so hard for help and advice when we are all at our lowest ebb ? I feel all the decisions made affecting us are made with the financial implications being the primary concern. I am not naïve enough to know that funding is tight in the NHS but the CHC

  • Sorry folks, I think I pressed the send button a bit prematurely.

    To continue ... but the CHC panel are not supposed to take finances into account. Why do I get the feeling that budget is behind it all ?

    Apologies for the rant. Take all the help you can get when it is offered. P absolutely did not want to go to Daycare a year ago, but goes 4 times a week now, albeit slightly reluctantly, but knowing it is better for us both.


  • Please please don't wait for a melt down before you get help. As much as i hate having the intrusion of having carers comeing in the truth is i don't think i would be able to cope. My story is last year Brian was in hospital with pneumonia and they wouldn't discharge him unless i agreed to have carers. So to get him home i said yes to the six weeks of care. After a couple of weeks he was back on his feet so i said we could manage. Within a few days of being on our own Brian had another infection so was knocked off his feet again. So it was a very tearful me phoning the community matron admitting that i couldn't cope. So i had to then wait till social services had been out to assess and sourced a company that could fit us in and give us somewhere near the times that were acceptable for us.

    That was the longest 2/3 weeks of my life knowing that i was going to get help but wondering when.

    Now i know that i have a girl to come in and help me to get him up and sorted. I have one girl in the morning and i act as the 2nd carer so i am still hands on. In the evenings i have 2 carers to sort him out whilst i have a glass of wine with my feet up. Janexx

  • Thank you all for your very helpful advice. I will give it a lot of thought.

    Next week G has an appointment with his Doctor I will ask him to do a referral to our nearest Hospice

    Love to you all Ellie

  • i no how you feel i was lucky i had my friend who came in to help me look after him but i apliad for direct payment so that i could employ her my heart breaks when this is still going on it is also were you live as well that counts i went to a if there is any help i can give you please let me no as there is nothing i havent learned of psp and what is there for you my prayers are with you

You may also like...