Feeling broken hearted

Today has been a bad day. We have had a couple of weeks of being stable but today I feel my world change again for the worse and I have lost another bit of her . Mum will not listen to me when I try to help her and instruct/tell her so she will not fall or hurt herself. She is again asking how and where to go for a wee ( she wears pads as now no longer aware at night when she goes and large pads in the day incase of accidents ) her mobility is getting worse and we can just about manage a transfer from bed to chair and wheelchair to chair/toilet but she fell last night and it's knocked her confidence , she has asked tonight to go home but we are home in the house she has lived in since being a child ,she has asked in front of my 9yr old why is he living here ? She told me she doesn't like anything I cook, she is never comfortable always in pain but thinks she tells me when it's worse and needs meds but she doesn't tell me and acts as if I should know because of course I'm telepathic ! No one seems to want to know , family say I'm doing a good job and they are there for me and to just ask but when I reached out today in tears no one came . Our local hospice where mum is under a palliative care dr has forgotten us for follow up after an assessment stay in August/September I have called today and they are sorry and will get mum in ASAP .

Why does everything happen/change all at once It's not like we haven't enough to cope with is it !

Sorry for rant just needed to vent and I know my psp family are always there . Xx

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13 Replies

  • So sorry to hear that things are so bad for you Sophiejo. You must feel at the end of your tether and especially if you asked for help and it hasn't been given. If there is any other way to get respite please explore this. Crossroads have sitters free of charge but unfortunately there is a waiting list, but get onto the list as soon as you can. Social services should fund some respite care which will give you a rest and I am glad that the hospice will be helping. You seem to have a lot on your plate and some days everything gets on top of us. Hopefully tomorrow will be a better day and you will feel stronger. The pspa have a local person who can ring you if you need them for advice and just a chat. Maybe if you ring tomorrow they can put you in touch. Gateway to care will also have a list of day centres and activities which may be suitable - depending on what your mum can cope with. I really hope you can get some help from your local services, we all need that. Sending you a virtual hug and hope you feel stronger tomorrow xx

  • Oh dear this illness is so horrible, you have a good few weeks, then bang, it all changes, sleepless nights, loads of washing, no time to do anything for yourself. I bet when you mum was not so bad, she loved her grandson so much, sophiejo she is still the same inside, it is this horrible PSP that does it, I am sure she doesn't mean, but it is hard, when you are tired, and just want a little bit of praise, for the hours you do, and the sleepless nights, but they never come, but I am sure they do appreciate all that we do. A big hug coming your way. Yvonne xxxx

  • Hi

    Have you referred yourself to social services? I found them invaluable maybe I was just lucky! They at least will give you three hours a week called a flexi break free, " """""""ing disease, sorry I seem to have no asterisks on my I pad! Xx

  • Oh sophiejo. You are going through the wringer at the moment. it's hard to accept but that's not your dear mum talking, it's bloody PSP. The argumentative, awkward and sometimes downright rude behaviour is all part and parcel of the degenerative nature of this horrible beast. The one thing you must do is try and make your 9 year old son understand that this is not his lovely nan talking but something that has taken her over, and that she can't help it. That will be hard because I have difficulty accepting it myself when it happens, and I'm supposed to be an adult. Thinking of you. All the best. Marie

  • It is really hard on everyone around. I guess your really find out who your family and friends are. My mum was the same, the catheter really helped her though. She was constantly falling and was black and blue, not to mention changing bedsheets. It was really awful. The catheter has prevented her from falling as she is not going 10-12 times a day and atleast 4-5 times at night. It's probably worth getting your mum assessed by an incontinence nurse. We were initially so scared of having a catheter fitted, but it has been a blessing.

    My mum has lost pretty much all her character, it's mum but it isn't. We get the odd glimmer of her sometimes and cherish those moments because that's all we have. Hang in there, it is really hard, a roller coaster of emotions and pain.

  • Oh sending you big hugs. It is so hard and you have your own family too to look after.

    I hope you can get some support from social services if you are not already doing so. I'm looking after my Mum and have no family so can relate to how you are feeling with no one helping you. It is soul destroying watching them progress before your eyes.


  • I think coping with the person who is no longer the same person is one of the hardest things.

    I often find myself saying " this isn't my chris " but it is.

    It must be so hard having your young children too. You must demand support from your GP. You have to make sure they insist on care for your mum so you can care for your children too.

    Love from Jean x

  • First, never, ever apologise for ranting! We all need to, all the time. That's what we are here for to listen to you, in the good times and especially the bad.

    I am afraid PSP loves the drama of everything changing all at once, the more it can send you into a tizz, the better.

    I agree with all the comments below, what sort of care package has your Mum got? If the answer is none, get off here now and phone social services, her GP, anybody else you can think of. Tell them things have got to change NOW!!! Sorry I am presuming you are in the UK, by the time of your post. Has she got CHC funding? Nobody can do this job 24/7, without help.

    Also ask for some support for your children, there must be people trained to help them, go through this trauma. Perhaps someone at the school.

    Get on to the district nurses and ask for a Catether, that will change your life. I know it did mine.

    To sum up, be a bloody nuisance to everyone. Shout, scream, cry anything that will make them listen. To quote your own words, they are not "telepathic" to your needs.SO TELL THEM!

    Sending big hug and lots of love


  • As always such comforting and wise words from my PSP family .

    I think mum has a water infection - sample deposited with the GP this morning this may explain some of what happened yesterday .

    I am on this roller coaster with my 2 sons aged 3 &9 other than their help in the house I am alone . We have no CHC ( we were not eligible mum didn't have enough high points to even go to assessment ) no support from social services ( just been told means tested sort careers out yourself ) no contact from DN or Incontinence team ( been waiting since 28/9 for assessment I have chased this but told takes 8weeks ) and it's only because I have a friend that is a nurse that my mums details are being passed to the Parkinson's nurse as we hadn't been referred to them by anyone - the hospice seems to keep forgetting us and we have to keep chasing for follow ups I feel no one wants to know.

    We go to see the Neurologist 17th November we will see what they say !

    Sophie xx

  • Sophie

    I can relate to a lot if what you have described. Social Services are very good when they work but when they don't?!! Our Social Worker doesn't know what PSP is! She has hardly ever been to visit and has upset my husband when she has! I know most people have never heard of it but when you are told this is what is likely to be the main cause of any problems you would expect her to read up on it? Or do I live in a fool's paradise? Guess I do!

    Our children are now adults but they have a child each. The eldest is 13. She has taken all this very badly. I managed to get her a session with a counsellor at our local Hospice. She didn't go back for more although I think she would have benefited. My Grandson is 7 and he too has been upset. However he has coped better. He goes to his Grandad and gives him a tissue for his nose and so on. He's a caring little one. However I am alone apart from when they visit. That's not often apart from my Granddaughter. When her Grandad who she lives so much is here she goes into her shell.

    My husband is in a Care Home at present after getting pressure sores and pneumonia in 24 hours. He ended up there after hospital to get a bit better begore coming home. All he wants is to come home. I really don't know if I can cope though. It almost broke me before and he is now a lot worse. He is in pain with his leg and both legs are so thin they are like matchsticks. He seems to be loosing weight in despite eating. He has never had therapy although he was referred for it. Still waiting and it is probably too late now.

    Ring Social Services and tell them you are cracking up and can't take care of two children and a very ill Mum. If you have to pay for care it is money well spent as long as you can afford it. You need your health and sanity to take care of your little ones as well as your Mum.

    I am pretty sure you are entitled to 3 hours a week sitting service. Don't be afraid to tell them how desperate you feel at times. It is the only way people will help you sadly. So ring Social Services again and as someone advised Crossroads. Think they are under the name of Carers Direct too. Seems they have joined forces. Carers Direct are very good to talk to. Ring the National Parkinson's Helpline. I have found them very good. The nurse will ring you back and my experience is they are understanding and try to help. The Parkinson's nurse we are meant to see has only been twice! She hasn't done anything to help.

    So sorry Sophie. We are all in the same boat but on different decks as PSP is not the same for all? It also changes just when you think you can cope with the latest developments. Give those boys a big hug from a super woman...their Mum! Plus a hug from me to you Sophie.

    Marie_14 xx

  • I'm so sorry, Sophiejo. I said a prayer for you and your family.

  • Sending a warm hug your way. The bad days are truly frightening. I have never been a patient person but this is teaching me to be. I am doing this alone also even though there is plenty of family around. I think it is difficult for them to deal with but I know it would do my husband good to see different faces. He fell three times yesterday and would not listen to me at all about how not to fall and how to get back up. His appetite is awful. He will eat ice cream though. I've come to accept that his diet is not going to be balanced, am content when he eats something. Nothing sounds or looks good to him.

    You are doing a good job.

    Celebrate the little victories (a successful transfer, a productive trip to the toilet, a bathing and change of clothes) and cut corners when you can to make it easier. When I am tired, I will use old blankets and old towels so when they get soiled, I toss them. Yes, I am running out but I'll deal with that when I do.

    You are doing a good job.

  • I know, I know. We chose palliative care for now. Hospice sooner than later. My little reprieve will be sort-lived but it has helped a bit.


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