Hiya my dad has had psp for 4 years, he fell a broke his hip and pelvis and came out of hospital after 10 weeks a month ago. His hip has

Mended and he is now walking with a frame. He is obviously fed up with himself and is quite low. He is being so hard on my mum who cares for him and very ungrateful for all she does, is this the psp or my dad not being very nice? Is anyone else experiencing this? Jo x

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  • Dear Jo,

    PSP brings out the best and worst of people. Over the course of 'time with PSP' I've gained the fondest memories of my husband and unfortunately also the worst. Its a callous disease with great 'unknowns' for what each day can hold.

    Regards, Alana - Western Australia

  • Thank you for your reply Sharon, it means a lot x

  • Dear Jo

    Your dad sounds exactly like my husband, the good days are sadly very few and far between. I have taught myself never to expect much from him as he cannot give it and so I just carry.

    Take care, kind regards

    Dorothy t

  • hi jo

    i have psp and was dxd 3nd hnalf years ago and can be v difficult in that i do expect thigns to be done NOW for me and not in aminutes tiem

    i try and be grateful for wha tis done for em but myh partner does not believe me when i say thanks 2 him

    for e g we have just returned from a 3 ngiht break to see my dad 92 years young) and living in N Yorkshnire about a3 hour drive from where we live now]

    my partner redckons he would not have such a hoolidya but without the sun good weather as i cannot ago abroa danyh more bjtu it is grea tfo rme ot revisit hte place of myh briht and upbringinag

    so we cannto hav ei all anhy more but i am thankful tha t i am stll able to do thsi journeyh

    lol JILL

    :-)

  • Psp is really hard for care givers too. But ofcourse not harder than what it is for the patient who is physically And mentally suffering . But please reassure your mother that he isn't being ungrateful because he wAnts to be. Temper, being unreasonable is a part of the condition . Please please be as patient with him cause he needs the love. To date I regret every time I wAsnt patient with my dad. He passed away 4 years ago.

  • Look at the person he was before. If he was a nice man before, it is the psp. It is a terrible disease, and based on our experiences with mom, the nicest way we understand it is:

    It takes such intense effort move herself or participate in her own care in even minor ways, that she is oblivious to what anyone else is doing for her. She cannot be grateful for what she does not perceive. Her frustrations are not meant to be hurtful. Our biggest hurt is that she has started hitting people when they try to help her. She thinks she is asserting her independence, but does not understand we are catching her. She starts to fall, we reach out and steady her, she hits. She has no idea that she is even falling. She was always a kind, generous and independent person before, so we just try to remember that mom, and support each other. I don't ever remember her hitting us as children, so I know this is the disease and not my mom. Best of luck, nothing is easy with psp.

  • Hi, Jo -

    Sounds like a combination of frustration and not being able to "think ahead" to consequences of his actions. Difficult to be patient, and you have my sympathy - you'll just have to go into another room and have a quiet scream! (or vent on this site).

  • i agree

    vent on this site - we all understand your problems (either from a care givers point of view or 4m the person wiht hte illness)

    lol jill

    :-)

  • Any type of pain brings out the worst in people. Just focus on the fond memories you have and encourage your mom to do the same!

    Although my husband is not very advanced in his stage of disease as yet, I have seen a side of him never seen before. It IS the disease and you must always remind yourself of that. So much we do not understand about the functions of the brain!!

  • Well hard to say. How was your dad before the fall and surgery? If his attitude has greatly changed you might get him to see a therapist or psychiatrist as it's common to have depression with this disease.

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