Hello everyone. I haven't posted in a long time but really feel the need for some understanding from those who know . Where do I begin? I spent a week with my parents about 3 weeks ago and living with them 24/7 was a real eye opener. It was important for me to see their daily lives rather than popping in for a few hours over a weekend. Where do I start? I'm not sure who to worry about more, my mum or dad. My Dad has developed new symptoms since the previous month I saw him.he now can't talk unless prompted to do so, he wolfs his food to such a degree it frightens me, he is starting incontinence, Botox for eyelids drooping is becoming less effective, constipation a real problem, and inappropriate laughter at the wrong times. His personality is nothing like the Dad I grew up with, I find his vulnerability heartbreaking. On the other hand, my mum is not coping in any way. It's like she hates my father and can't see beyond the PSP. She screams at him constantly and no amount of telling from myself or my sister can get through to her that it's the PSP not Dad being purposely annoying. I know she is terrified and is like a rabbit in the headlights but she won't listen to anyone. She doesn't want to know anything about PSP. I've told her about this site, the association, but she is in complete denial. I am concerned about Mum not even helping Dad maintain his simple physical dignity. I wish I could see her stepping up to start "caring" for my dad but she seems totally paralysed. I know compared to many of you on this site we are in the early stages but I find dealing with the emotional side of the practicalities of Dad's caring so hard. To top it all, I lost a very dear friend suddenly recently and I'm feeling in a fog that I can't get out of. The one beautiful thing to

Come out of it was that I was in my parents kitchen and dad was standing there like he does as if he was lost just after I had heard about my friends death. He suddenly opened his arms and held me like a child for what felt like forever. He has lost so much ability to be empathetic and yet at that point my old Dad was still there . I will treasure that memory forever. Sorry to have written so much but I really feel the need to talk. Thank- you for reading, Nicky x x.

18 Replies

  • Dear Nicky, oh my, you are going through a tough time. I do sympathize. It is heart-breaking. My parents went through something similar in the years before my dear dad died; after almost 60 years their communication was breaking down and it was hard to witness. Some of it had to do with my mother's fear as my father started losing his mental acuity, and that fear can devour everything. And denial, what a bad coping mechanism that is, right? But nearly universal. I don't have any advice, except the usual. Take care of yourself, and cherish those moments when the love comes through, as you are. Hugs are always good. Maybe with you there to give her some respite your mother might get her feet under her. I'm thinking of you and sending wishes for all the good there can be in this awful time. Easterncedar

  • Hi Nicky,

    What a mess. I know exactly what you are going through. My Mum has Alzheimer's, her partner who has had a couple of strokes, has gone from the cared for, to the carer! You can imagine the mess they are in. Everyone in the world has told him that there is loads of help for them, but exactly there is none. My sister got in touch with all the people he has seen and not one is going to do anything. All they are doing is sending someone else in, so confusing him even more!

    I'm stuck here, with my husband with PSP, I trying to help, but time and strength are not on my side!

    I really don't know what you can do, your Mum, as you said, needs help. You could try the PSPA, talk to them, they might be able to put you in touch with someone. Sounds as if a councillor, if you can find one, might be a good idea. Certainly, if you can their permission, talk to their doctor, so he knows what is going on.

    You say your Mum shouts a lot,(can relate to that!!!). One thought that does come to mind, this might be how their life as been for some time, without your knowledge! So while you think she is being cruel and not caring, your Dad will just think it's normal, he might be more concerned if she stopped!!! Of course she is frightened. I can assure you, it's terrible, watching your partner in life, die, inch by inch, in front of your eyes and there is absolutely NOTHING you can do, every inch S loses, I lose half, thus my ability to cope seems to go down each day. I am still relatively young - 59, I dread to think how someone older is able to cope with PSP, probably with their own health issues.

    They say youth is wastes on the young, well, I am coming to the conclusion, old age is not viable for anybody over the age of 50. It's far to hard and impossible to deal with, when tired and ill.

    Best of luck with your Mum and Dad. Sorry, I haven't been able to help, but please stay on this site, if only so you can rant and rave, with people who know and care!

    Lots of love


  • "Old age is not viable for anyone over 50." Hah. Well said, Heady. You and I are about the same age, and oh do I feel for those who are much older and coping with all this. Until my shoulder gave out I was at least confident in my physical ability to deal with the psp, however inadequate my intellect. Now I'm so frightened of him yanking my arm that he is getting the feeling that I don't care for him as I used to. He does yank and grab and press and lean on my shoulder all the time. He can't remember, and can't see or process the meaning of the giant sling, it seems. He has even grabbed the sling to right himself when he is unsteady. I beg and shout, nothing helps for long. I just make him feel bad, and I feel sick at heart. It's been more than a month, and I may be in this sling for another five months or more. And oh then I have to think what it must be like for the older folks, who are coping with their own aging and increasing fragility while caring for a spouse with psp or Alzheimer's. How terrifying. I am at least relatively young. My arm should recover. I better count my blessings, and go give that man a cuddle. Love to all, Easterncedar

  • well hi everyone we are all in a grumpy mood today aren't we but never mind we will all be better tomorrow wont we there is to much negativity going on today but its good for you all to let off steam and have a rant but the problem is still there is'nt it but cheer up there must be better days ahead for all of us just to, listen to the rain on a tin roof just looking at your garden to see how its going along just looking at your wife preparing the dinner just smelling the grass after it has been mowed there are a million justs in this world just sit a while and think of a few it will take your mind away from all the nasty things you say or do or have said quite unintentional things that have been said in the heat of the moment yet I have never heard a person with psp say WHY ME take care all of you out there it will be a better day tomorrow for sure

    peter jones queensland australia psp sufferer we are all in this together remember

  • Hi Peter, we are in a grumpy mood, 'cause we haven't heard from you for a couple of days!!! You are our rock, when struggling through the dark, grim days of PSP. Who else is going to make us laugh!

    You are right, I have never heard the "why me's" either. I suppose I'm in the category of "why not us!" Perhaps, we all believe, that the sins of our previous lives, catch up with us. So, basically, we have all been very naughty boys and girls and him up stairs had great fun inventing PSP for us to enjoy!!! Let's hope we all had fun! I can't remember.

    Keep help making us smile Peter Jones of Queensland, Australia!!!

    Lots of love


  • Regarding the why mes. I had a dear young friend, years ago, whose father died of a rare blood cancer when he was 10, which was the year he was himself told he had cystic fibrosis. His mother, my friend, died of a heart attack at 59, when her son was 16. After his mother died, I spent lots of time with Paul, who never complained, sick as he was, doomed as he was, alone as he was. He had a bright good humor and a love of music, and he liked some of the same old rock and roll I did. He was religious, which helped him, of course, and I was glad of it, although I have never shared that. I asked him once why he thought he had been given this fate, and he apologized for having to answer with reference to god, but said that he thought god tested the ones he thought worthy. I was glad he had that comfort. He died in his 20s. I am not fond of his god, but am grateful for the life I have been given, undeservedly full of joy and ease, however currently challenging. And that's my preachy lesson for today. Love to all here, Easterncedar

  • You are right as ever, Mr. Jones! We are so lucky, Mr. C and I, to be able to enjoy so much of the good things in life together. There is so much suffering and grief in the world, and we have a peaceful place to live and access to nature's beauties all around, loving family and friends, and each other. Psp hasn't separated us yet. Thanks for the cheering word. All the best, EC

  • Hi Nicky, my husband has now passed the stage your dad is at but I can well remember the frustration I felt when he couldn't do what I asked. How he crambed his food into his mouth as if I'd been starving him, those first few weeks until I learnt to cope with incontinence etc etc. I remember saying out loud and in tears "I can't do this anymore". This site recommended contacting the hospice via the GP and both our lives changed. Mine because they put me in touch with various organisations and I was given help, his because I was so much more relaxed with time during the week to get away and recharge the batteries a bit. Caring for my husband is still very hard and exhausting but I feel equipped to cope now. Does your mum get any regular help? Your dad's reaction to the death of your friend shows you that he is still the same man he always was and he can't help what he does. You know that and I hope your mum come to understand that as well. We have had 42 years of very happy marriage and neither of us have ever shouted at each other until PSP when on occasions I have "lost it" but I have always kissed him and said I'm sorry afterwards with tears streaming down my and his cheeks. As Heady said, maybe shouting has been part of their marriage for some time. If you are deeply in love with someone with PSP it is difficult, if you have lost a bit of that love, it's going to be almost unbearable.

    There are no magic solutions but do try and get your mum to seek more help. I had the same problem as Heady with a mum with Altzheimers and a dad with heart problems and there was very little help offered to them but we have had lots of supporter. We were all in the same village but the neuro team support us.

    Very best wishes Nicky.

    Nanna B

  • Sorry, Nicky, rereading this I see you were visiting your parents for a week, so you are not there. That makes it even harder. Knowing how and when to intervene with ill and aging parents is a frightful challenge. That vulnerability tears at your heart, and upends the world. Wishing you strength and love, Easterncedar

  • I am sitting here with tears in my eyes reading this and all the replies. It makes me realise no matter what the person with psp goes thru the carer goes thru as much if not more because we can't do anything about the situation. I found myself saying this morning "well I don't know whats going on in your head because I aint a mind reader" and that was over something silly and I was busy and if the truth is told I was to wrapped up in what I was doing to give him time to get his thoughts together and tell me what it was he wanted. So yes we all do things that we are ashamed of but we have to admit that sometimes we cant help how we act or feel. And yes we don't know whats in there head and if we did how scared would we be. Brian has said perhaps we should all count to 10 before we say or do anything it will save us time later god bless his logic. Hugs to you all Janexx

  • To all those who have replied to me....an enormous thank-you. It's incredible how powerful it is to hear love and understanding from those who can appreciate your worries. I utterly admire each and every one of you, I read this forum daily and feel like I know you all individually and yet we've never met. We are all going through our different trials and you all do it with such dignity.

    I wish each of you a peaceful day, with not too much stress I hope. I have called my parents GP and Crossroads this morning and now just need to work out how I broach these next steps with both my parents. I must take strength from the fact that although we lerch from one crisis to another we do always move forward in some way or another!

    Love to you all and thank-you again x

  • Thinking of you x

  • Sympathy to all,it is so hard.My husbands voice is so soft now and he muddles words and often what he wants to say is quite randam so I can't even make an intelligent guess .Also he always puts more than one sweet in his mouth now! strange ! Px

  • A lot of all these symptons are very often caused or made worse By the medication which is prescribed in the first place to improve the situation .

    It's chicken egg /egg chicken isn't it . We are all fighting a losing battle but we won't give in .

    Big hug to everyone .

  • my love to you my dear - i am the one with psp so i know how much my husband does for me and i am just so grateful ...

  • Hi Nicky, I've just come 'home' to live with my parents - to give my mum a break - well, to give them a break from each other I think! I think she shouts and belittles him - talking to him like a child and getting angry that he 'mumbles' - but then I wasn't here when he fell down several times at night and was she was so scared and unable to help him. She had to call neighbors in the middle of the night. He was always the rock - now she has to be strong, and at 79, a cancer survivor herself, it's really hard. Before I criticize, I will do my hardest to wait and see, and think they must be used to this - and it's hard on both of them - so if I want to do things right by them, I need to keep those thoughts to myself, and just help where they both need it. Thanks for posting - it made me reflect on the situation here.

  • Hi Lieve, well done! You do understand the situation very well. You are going to be alright, with this insight, you will be able to help!

    Lots of love


  • Thanks, Heady - one day at a time, right?!

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