Hi i was just wondering if anyone knows if headaches coincides with deterioration as when ever my dad gets major headaches his eyesight becomes worse and so does his movements.

He was doing really well last week hes was abit more mobile but then Boom along came a headache and now he cant see me or get up on his own. Hes really down at the moment and told me he wants to end his life and can i get him a gun to do it with.

Of course im not getting you a gun i said and he said oh why not, please!.

He doesnt understand what he is doing to me by saying that sort of stuff. I felt gutted and when i left him i just cryed and cryed. I dont know what to do anymore feel really helpless. :(

10 Replies

  • Oh, my heart goes out to you; I can practically feel your pain. I am 54 and in the earlier stages of PSP.

    Whether your Dad knows what he's saying, and in particular, the devastating impact on you, know that he must truly be suffering to speak in such a desperate way. From what I understand, toward the end stages an individual is almost, if not entirely consumed with what the PSP is doing to him internally, is quite painful, and he's not cognitively all there.

    I'm sure this sounds like cold comfort. Know this, tho; I'm a suicide survivor twice; the 1st was my 23 year old husband back in the late 70's, and then a blessed friend of mine in the late 90's; never saw it coming. She was upbeat and my mentor. Left behind 5 kids under 12.

    Whether it's source is a slow but painful death, or a silent on the outside mental illness that those closest don't detect, suicide sucks. It simply does. So does begging for it. It's unbearable.

    Somehow, someway, you have to try to understand when he speaks this way his only concern is to end his overwhelming suffering, not what you or anybody else is thinking. It sounds very selfish, doesn't it? Somehow you have to separate yourself from these extreme events when they happen, and as you listen to him begging for his life to end, you need to remember it's his disease talking, not him.

    Perhaps that sounds like more cold comfort; but know my thoughts and prayers will be with you and your family everyday.

    Judy J

  • Hello Virgo32

    What a terrible time you are having seeing your dad like this, and of course, he's really suffering himself from the aweful effects of this disease. I'm not sure from your previous blogs if he's on any medications for PSP symptoms. Often these medications cause headaches, and some, when uncontrolled, can cause mood disorders like feelings of worhtlessness, depression and suicidal thoughts. Even when PSP symptoms are not being treated, there are so many areas of the brain affected towards the latter stages that it can cause depression and associated outcomes. As these blogs have mentioned before, not every PSP sufferer will go through these type of symptoms.

    (Of course, the cause of headaches is hard to define sometimes in "healthy" people, so with PSP the causes can be multiple, from blood pressure changes to neck muscle stiffness, to eyesight problems etc etc).

    The feeling of helplessness is so real to many of us, but somehow we have to travel this road. We feel for you!!!! I know you have other concerns in your life from your previous blogs, so it's easy to be overwhelmed. We trust you'll find the strength to face the difficult future (with family and friends), and trust your dad will not be suffering much longer. I think you understand what I mean by this remark.

    Take care of yourself (so important) so that you can take care of your dad.

  • hi virgo my heart goes out to you thats a terrible position to be in and i do not think your dad realised what he was asking of you \\\i wish io could take away your pain from all this but of course i can't \\\just look after yourself because without you im sure your dad would be a lot worse off you have done your job mate dont be hard on yourself take care peter jones queensland australia psp sufferer

  • That's such a hard thing to hear from your Dad but he must be desperate to say such a thing. I would talk to his GP, they may be able to give him something for the headaches. Does he have a history of migraine? There is a condition known as "cluster" headaches which can also be successfully medicated. When did he last have his blood pressure checked? High blood pressure can also lead to severe headaches. If he doesn't eat/drink very well dehydration can cause headaches.

    It is so easy to assume that any new symptoms are linked to PSP but this is not necessarily the case. There are loads of potential causes for severe headaches but they all need to be investigated!

    Is Dad on antidepressants? If not it may be worth discussing this with his GP, too. Depression is very common in people with PSP (and their carers!!) Do you have people around you to support YOU?

    Take Care

    Hope you get some help soon

    love Kathy x

  • Hi Virgo

    I have gone through two episodes of my husband wanting to kill himself and, not to be too dramatic, all the household knives and scissors are hid away.

    It is the one of the most frightening and distressing things to have to deal with on this journey through PSP and I understand where you are coming from.

    take care of yourself


  • Dear Virgo, I can only imagine how that makes you feel-I felt bad enough and cried buckets when mum was very brave and uncomplaining so it must be terrible to hear him saying this. I imagine that my mum felt the same way but didn't say it and I would be lying if I said I didn't wonder if she was just masking her true feelings. She did have bad headaches though not very often and only towards the end of middle stage. It would mostly coincide with infection. Sometimes we could not find where the infection was for a few days and as you know if you are running a high temperature you will feel wretched. As mentioned above depression is a common feature. Mum never showed signs of depression, it was the only thing she didn't seem to have. However when she was having a quiet day I used to find she would stare at me for a long time and not disclose what she was thinking about, her stock answer being 'nothing' when asked.She did say she sometimes felt like crying when asked by Continuing Health staff which was quite a surprising thing for mum to say as she never 'did' crying. Have you also considered the effect of light? Mum's eyes used to stream if she was in a lit up room or outside and she needed to wear dark glasses or have the curtains drawn.She was better with side lamps than one main light. It seems to be a common thing to be light sensitive with PSP. Dark glasses could be a way to eliminate this as a cause of his headaches. Just a thought.

    Dianne x

  • My heart goes out to you. I'm a male and can't imagine a woman dealing with PSP as its difficult for me, a male. Must say I've had my crying moments. My wife doesn't have headaches at this time. My sister is reg nursing assistant with PSP patient who is on a PEG and the woman doesn't speak but one day blurted out "die, die, die". This PSP takes a real toll on us all. Hang in you are doing all you can. Hope someone can help with headache info


  • Good morning all, thank you to everyone with all of their postive feedback.

    Dad is under the mental health act and is taking a medication for depression has done for years.

    They have put him on medication to help with his headaches but some days they just dont work.

    I have had a phone call everyday this week from the nursing home saying that he has fallen over again. He knows he cant walk but still persists on trying then down he goes. Flat on his back and has banged his head on the door a few times. He just wont listen and is still trying to be independant which i dont blame him.

    On top of all this i have my mum back in New zealand as i live in Australia and she is now in hospital due to falling over as she has MS. She was up visiting my Step Dad with heart problems and tripped on her way out so is now in the hospital herself with sprained wrist bruised side and cant walk on her leg. Grr just what i need on top of this.

    Any ways i guess i better be of to work have a good day everyone.

  • Hi virgo32, I am so sorry for your dad and mum, I hope things will go better. I just wanted to tell you that we know when my father is going to be deteriorated when he starts complaining of dizziness, so seems that they have alarming symptom before the episode comes. and exactly as your father my father knows well that he can't walk or stand alone but he he keep on trying and keeps on falling with many injuries that once broke his ribs.

    I know and can feel how you feel, it is very difficult to see your great and beloved Dad like that, just it may be little bit better to know you are not alone and there are so many having, living and suffering as your Dad and you.

    Wish all the best for you, father and mother and things get better soon


  • hello virgo ,

    i am a PSP sufferer and i hate reading all the blogs from people who are suffering it themselves or , worse, are caring for a loved one who have it ... but i still have to !!

    all my love and prayers go to you all who are such wonderful carers and a HUGE THANK YOU TOO

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