Mum diagnosed a few weeks ago

Hi. I'm the main carer for my 76yr old mum who has PSP. My dad looks after at the weekends but doesn't watch her like I do and he is a bit hard of hearing so he doesn't always hear her fall. He has to go in for a heart valve replacement soon, and I'm dreading having to stay here on my own with mum as she is demanding and impulsive. I feel guilty that I. Get a bit ratty with her but I'm so tired and I also have a 12yr old son to worry about. Does anyone else get frustrated that the person with PSP does not listen and therefore puts themself in danger?. I feel so guilty

14 Replies

  • Oh, yes, I lose my patience often, and then I feel terrible, and I don't have a 12-year-old to worry about. I try to remember he can't help himself and to take a deep breath before responding, but it's not easy. Nothing about this is. You're in such a stressful place, so much to worry about with both of your parents - please give yourself credit for all you're doing, and don't give yourself a hard time about the rest.

  • hi lindsey i should not worry about getting ratty and feeling guilty i think all carers at some stage have been frustrated and ratty but i would not let it worry you because its a long road we have to travel its not easy just take it as it comes i think the more you worry the worse it gets \\ try to get mum into respite for a little while to give you time to have with your son and recharge your batteries you need it as you need the patience of a saint and we know this its just that we cant help whats been dished out to us i myself would like to, do more but my wife bears the brunt =of it now as she gets upset when i fall over etc but we wont go into that \\ so no 1 take care of yourself no 2 try not to worry to much [ easier said than done] and no 3 think about the respite for mum ]] it will do wonders for you i have psp and i would not like to be a carer for all the tea in china

    but we have to do what we have to do \\ anyway mate good luck to you and your mum

    take care keep smiling peter jones queensland australia psp sufferer

  • Hi Lindsey, I felt dreadful today as my husband said very quietly and with difficulty, "Please don't shout at me". I gave him a hug, said I was sorry and we both cried. I know I'll do it again though when I'm tired or trying to do something and I have to keep stopping because he tries to get up yet again. Something I have found amazingly helpful is a motorola baby monitor with 2 cameras. Now I can watch him whatever I'm doing. I even take the monitor into the bathroom with me. I am able to speak to him through it so if I see him about to get up I can tell him to, "Stay still, I'm on my way." Most of the time it works and he waves to me. He said he likes to know I can see him wherever I am.

    It's a difficult situation we are all in but it's good to know others understand.

    Best wishes

    Nanna B

  • Thanks. Good to know others feel the same. Mum saw an article on the news this evening about abuse in care homes and got really upset. She was crying saying "don't put me in a home ". I tried to reassure her but it was really upsetting x

  • Lindsey,

    Sorry to hear about your mum. My brother was my mother's main carer and it was exceptionally difficult for him and i know there were times he was very ratty. He had no help other my twice weekly afternoon visits. Please don't feel guilty and do get some help. By looking after yourself you will be in a better position to help your mum and your son.

    We made the decision for my mother to go into a nursing home about a year ago and it was at that time she was diagnosed with PSP. It was difficult and took us all a while to come to terms with. I know it was the right decision just a horrible one to have to make. Not all nursing homes are awful. My mothers is ok. The staff are very good with her even though she is not easy (even before PSP!). I like it because we can turn up whenever we want. Good luck and please try and get some help. Chrissie

  • Hi Lindsey Peter is quite right, he always gives good advice. Your Mum knows you love her, you must try and get more help. Have you been in touch with the PSP association? I don't know where you live. All the best shall be thinking of you all

  • Thanks for your replies. I will talk to the GP about respite care as she did mention a hospice that could do that. She told mum that hospices are not just for end of life care which I wasn't aware of. Flicka - yes I gave the PSP helpline a call and they sent me lots of information. I. Am in the South East of England (Surrey). Thanks Lindsey

  • Do remember that there are really good care homes out there that the wider public never hear about for respite care, or more later on. We're in East Sussex and my dad has excellent care in a good environment near where we live. Do explore all help options. Very best wishes to you all. Morag

  • Dear Lindsey

    You are doing an amazing job. My mum lived with me for 9 months, we now know she has MSA reather than PSP but ere are a lot of similarities+when I joined this forum I was convincved she had PSP, thanks to the amazoignbinfo avail on this forum. I was almst right. She is now in a wonderful nbrusing honme which was recommebeded by the hospice -the hospicesa are amazibng, theyt can offer so much support and advice. Without them telling me about this home for respite we would never have known about it. They also helped secuee continuning care funding. My mum has been there 1 year now. Sj is paralysed and her voice is going but she is secure+happy. I'm still recovering from the intense. Last few years since she got ill. DO make sure u accept all the help u can, its a very tiring journey and u need time for your son and for you, I'm 33 but find it hard as I also have an autistic brother to keeo a look oiut for. We all juggle but it can make us ill too if we arenoit careful. So sorry abt the typs, am on blackberry. Best wishes and hope your dads heart valve op goes well. X claire

  • Thanks Claire. Mum was the other way around, she was diagnosed with MSA first and then a second opinion diagnosed PSP. Sorry to hear about your mum x

  • Bonjour! , my dear Lindsey 48. How right you were to write and tell us of your trying situation with your Mum..not to mention Dad soon going into the repair shop.

    Too true ,you must blow your top, its the carers safety valve after all.

    A primary carers life gets so steamed up we're like pressure cookers...when we're cooked, we let off steam and get ratty. Sometimes when I lost my cool about something with my late PSP bride we would have a good slanging match. Then both have a good old laugh and a hug after. That was in the early stages.

    But my, did I feel better!

    As you went thru' all your replies,Lindsey, you must have realised that you are not alone on this PSP Island and that there's a lot of man Fridays out there listening in the PSPAssociation whom you can talk to.

    All mentioned respite,Lindsey,and they're right!

    Not having lived in the UK since 1958, do get some local advice about where your Dad can go for a long stay to recuperate after his new valve job. So's you only have Mum and son to look after...more than enough.

    Warning! You've just got to look after yourself, too, a 12 years old lad still needs his Mum around.

    On the brighter side, Lindsey, you may have missed this on one of my previous messages:

    One day I phoned our Special PSPAssoc. Nurse with a few questions when I ventured ..."we know what PSP sufferers die of but what about their carers,how do they go?"

    She immediately replied with not a moments hesitation...."they die of shear exhaustion,my dear!!!"

    There you have it.

    Take care, best brian

  • Hi Lindsey my mum just gone into a lovely nursing home after having psp for 6 yrs I would say have a look at some homes near you check out all the reviews and choose one you like then look to regular respite there so if the time comes when she needs to go in full time it is not so traumatic as she will be used to it .Also our local hospice now takes people with neuro degenerative disease , so mum also goes one day a week to day hospice they are also very supportive to relatives .good luck Louise from Shrewsbury England x

  • Hi, I have PSP and am impulsive and put myself in danger when i do so .but is, still trying to do things 4 myself when I should leave it to, others ..."

    Loljill and a smile:-)

  • My husband is now in a care home. He fell on me several times and was always getting mad at me. Now that we are not living together, we get along so much better. Our time together is quality time. I still do tons of things for him, and he seems happier. I did not realize how bad our situation was. Now we laugh more.

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