Hi Guys

I am new to this web site but i have a father who has been diagnosed with this nasty disease since Sept 2011. Before then they had diagnosed him with Parkinsons.

I just want to say for anyone that is going through what myself and my dad are going through i really feel for you.Dad can no longer walk, he wets the bed, his voice is very quiet and can bearly eat anything.

His vison is pretty much gone everything is blury and his eyes want to close all the time. He is in a very sad place at the moment and just recently tryed to cut himself in the stomach with glass.

He get s a very bad pain in his head and it just makes him want to lash out and hurt others. We constanlty cry for him and he just wants it all to end. We have had to put him in care as i work full time and have a family to raise, and it was one of the hardest things i have had to do. I just hope when the time comes for dad he goes peacefully and with no pain. I do not want my dad to die but i hate seeing him this way where he has no life and is just existing.

Thanks for letting me get a few things of my mind today as i find it hard to talk openly to others.

11 Replies

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  • hi virgo 12 im sorry tom hear that your father has got psp i think you have just voiced what a

    lot of carers must think when they are going through this its not easy is it mate and im sorry for you as well as your dad its not been easy for him to find himself locked away inside himself especialy if he was an outgoing person i was an entertainer used to sing and do comedy magic i find it very hard but that's the way the cards are dealt i'm afraid i just have to make the best of it

    just live one day at a time and you will have to do the same im afraid\\\ look mate nobody wants

    to see many parent die i can understand how you feel and i can understand how your father feels as well\\ well i cannot solve this issue for you time will do what it has to do so good luck with your dad my friend take care and you have come to the right site there are some much wiser than i am

    if you want to talk about it there is always somebody here im glad you got it off your chest its hard for other people that have nothing wrong with them to listen to especially when it does not effect them and you cannot blame them either don't forget if you want a chat this is the place for it take care peter Jones Queensland Australia PSP sufferer

  • hi virgo

    i agree with peter jones of australia (who i htink also has the slow sort of psp like myself)

    i have psp adn since i was dxd in dec 2010 have managed to stay at home -i am falllign 4 times a day but apart from lots of bruises am ok

    my eyes are closing a lot as wellas uyour dad's and my speech has gone a lot quieter over the pas t12 months

    everything has speeded up for me and i cannot relax or rest at all 9my typign is now v dyslexic as well - i haand stronger than the otherE)

    i do nto have children to see me get worse and i have been thankful for the 1st item ever that thsi is the case

    so hang on in there and amy tiem you wnatto chat w e r herefor you

    where are u ? in the UK?

    lol jill

    :-)

  • Hi Virgo. We all know exactly what you are going through. My Dad was diagnosed in 2009, but it took us a year to get a diagnosis. He can no longer talk, and is suffering from paralysis (he was also diagnosed with MSA - Multi System Atrophy), so even moving him from bed to a wheelchair takes 3 people. We are in the fortunate position that my parents are retired, so my Mom employed 2 care givers to assist her at home. He has just suffered his first bout of pneumonia, and this has weakened him even further. My thoughts and prayers are with you, as it is a terrible disease. I have found family support crucial. In times of need we summon up the strength to be there for each other. Be strong, but when necessary a good cry (or howl) doesn't hurt either.

  • Hi Virgo, so sorry your feeling so guilty but it's natural, we all want the best for our love ones and feel helpless when we don't live up to our own expectations. I feel guilty all the time and hubby is at home with me, it takes all my courage to just tell him i need time out and he hates it but deep inside he understands their isn't much choice, and i feel guilty knowing if it was me I'd be upset being left elsewhere. But it has to be done, just spend quality time with him when you can, and make sure he is getting enough painkillers, Speak to the residing doctor, keep yourself up to date with what he is getting.

    My hubby is taking sleeping tablets every night now as well as some panamax ( he doesn't feel pain but it is there in his actions and i have seen a lot of improvement in him since.

    I have read a lot of comments online and think once the pain is really bad it wont last for much longer, some of his favorite music and a good sense of humour may help him feel better Good luck we are all thinking of you!

  • Welcome to an amazing support site, We are all here for you and feel your pain. I had to put my mum into care too as I was working albeit on a supply basis to fit around mum but it was too exhausting in the long term of things and mum needed far more than I could humanly give in the end. As you are realising PSP affects everyone in different clusters but eventually they all appear in some form or another and all you can do is take each day as it comes with the disease being one that fluctuates so much. Just make the most of the good times and file the bad ones away as life really is too short with PSP to worry about every little thing.

    Mum had headaches too but I had forgotten about that bit as it didn't last too long.Maybe some of it was when she was fighting more and making herself over tired.

    Keep tuning in, we are here for you,

    Dianne x

  • Hi Virgo , I know exactly how you feel , I was one of my brother's main carer's , he too had P.S.P. he passed away only a few months ago . It was so hard watch such a young man lose everything , I would cry on a daily basis, get angry with God , and feel guilty when I would pray to the same God to take him out of his misery . The people on this site kept me going they are truly a blessing , so when you are feeling low and the days you feel helpless log in here and you will feel much better and you'll be ready for the next challenging day . I wish you all the best and like Peter said take one day at a time ....Aine xx

  • My heart goes out to you and your family. You are right, this disease is TERRIBLE and no family or loved one should have to endure it. Sounds like you are doing the best you can for your dad so keep it up and know that you are reflecting your love for him. When was he first diagnosed with PD and when with PSP? Remember, if you are doing your best that is all that can be accepted. Don't take on guilt for the process you are all going through at the moment.

    Jimbo

  • Hi Virgo,

    It's always sad to hear of yet another family suffering because a member of the family has PSP. My husband isn't at the stage of your dad yet but is slowly heading that way. This site has been so helpful, just voicing concerns, frustrations etc, to folk who know exactly what is happening, is a comfort. I hope it does the same for you. My prayers are with you and all the others who we know on this site.

    NannaB

  • I just want to say a big thankyou to everyone that has left me such heartwarming and much appreciated comments. I am living in QLD Australia and i am the only family member of dads over here so yes it is really tough for when i need time out with my husband and children that i have no one else who can visit dad or take him out on a day visit so i do feel really guilty when i cant make it up to the nursing home to see him. Dad is really struggling to accept the fact that he has this illness and still thinks he can be fixed. I try to explain to him that you have to take each day as it comes and to ride with the path that god has given him, but hes in total denial. He told me yesterday that he is scared of what is going to happen as his eyesight has deterioated and everything hes sees is blury but i didnt know what to say to that, so i told him to just take one day at a time.

    I used to take him home on a saturday for overnight stays but two weeks ago he tried to take his own life by using a bolt from his bed side cabinet and smashed a glass and used that to cut his stomach with. I was beside my self when i went in the morning and there was blood everytwhere.

    He must be in such a dark place to want to do that to himself. So now he is under the oldest persons mental health system and they have told him he can no longer come home for over night stays. He doesnt undestand why and tells me im being selfish. He can say some really hurtfull things to me at times and tells me im being lousy for putting him into care and i should be at home looking after him. He just doesnt understand that i need to have my life aswell and if i get sick then there will be no one there for him. I love my dad to bits and am trying to do whats best for dad.

    I just hope he comes to realise this before its to late. I know they say they all ways hurt the ones they love the most and it does really hurt. I tell him if i could make him better i would in a heart beat, i would love to have my old dad back again but its not going to happen so i will do all i can for him now until his life comes to an end.

    Thanks for reading by blog :)

  • I am so sorry for you and your family. I too have a father with PSP. He was diagnosed 5 years ago. To my surprise because I thought it was only 4 years. Time seems to slip away as the disease progressed. He and my mom have moved in with myself and my family. Up until a month ago, my mom was caring for him alone. I promised I would never put him in a care facility and I am doing everything possible to honor that promise. He is 75 years old and cannot walk without assistance. He has thickened liquid due to his narrowing esophagus and throat spasms. He has a catheter and just recently lost control of his bowels. We feed him and bathe him. He only says yes or no and "dear" because that is what he has called my mom for the 57 years they have been married. His doctors just this week have given him 6-9 months to live and hospice is being notified.

    I know what you mean about not wanting him to die but also not wanting him to suffer. It is so hard to make sound decisions when your heart is filled with sorrow. Our boys ( ages 9 and 11) have not been told of the recent information concerning the time dad has left. I don't want them worrying about their grandpa and I want them to enjoy being near him while they still can. They will be told when my dad is at the end.

    My heart is heavy for you and know that all of us are praying for your father and for your family.

  • Hi virgo from spain, my father has psp too. its in a similar stage as your dad, be strong i know how can you feel but in this website you can find a lot of people that its living what you do.

    try to care about yourself too

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