Julie

Hi all. Never posted on anything like this before,,, lost my dad last October to Parkinson's, he had had this disease for 12 years, and was still like DAD ... After his death I found out my mum had been diagnosed 2 years previous with psp... Everything clicked into place of how she was, how she howled one minute and was fine the next, how she slurred her speech ( we thought it was her new dentures) , how she was bad walking tho this we thought was due to a trapped nerve, but on surgery to alleviate this she got worse. Thinking back to her holidays 4 years previous , she had falls she could not explain even then. She has made bad decisions in purchases, and generally you cannot get much conversation from her.. She is not MUM anymore, as it stands now she is hospital after a bout of falls, and remains whether she is safe to return home. My small children get scared when they see nannie as they do not understand why she cries, it is very upsetting.

She is very stubborn and independent as we would alike to be, she tells me very little about her medication , which she is getting muddled taking. I talk to her Parkinson's nurse, her doctor but there is little I can do ... Thanks for reading

20 Replies

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  • You have obviously read up about PSP and have read some of the posts here . Stick with this site as it will give you tremendous support from all-around the world when you need it . There is always someone around who has gone through what you are going through and give you the benefit of their experience . You will find laughter and tears and a lot of warmth and understanding . Good luck Georgepa

  • hi Julie i 2nd that to georgepa em mate and what rotten luck your parents have had I wish your mum all the very best and yourself of course peter jones queensland Australia psp sufferer

  • Thankyou , I cannot talk to any of my friends as they do not understand any of this. Hugs to you

  • hi Margaret I actually wonder who my friends were when I got psp mate it soon sorts the men from the boys anyway hows it going now feel a bit better not so isolated

    when you can have a chat to someone in the same position or someone who has the condition because they might be going through the same as your mother is now or have been through that stage ok mate good luck and if you want a chat there's always someone around see yer take care mate regards to mum peter jones queensland Australia psp sufferer

  • Thankyou

  • How awful for both your parents to have to suffer from these awful conditions and dreadful for you to see what is happening now. I hope the correct decision is made before your mum is released from hospital. Inside, she is still your mum. She will think she can do what she always has done. She is also grieving for the loss of your dad. Her whole world has been turned upside down. If she was his carer she would have thought little about her own illness doing what she would have had to do for him and if he was in a home, he would still have been on her mind constantly. If she is like my husband, she won't want to think about what is happening to her. This will cause her to fall and have accidents. I don't think she is being deliberately stubborn. I have used the same word to describe my husband as I don't know what other word to use but he is not thinking he will be deliberately obstinate, he just doesn't understand his inability to do something and doesn't see the dangers. He doesn't know what all the fuss is about.

    I don't know how old your children are but I explained to our 2 and a half year old grandson that grandad was a bit poorly and it makes him cry sometimes but sometimes he cries when he is happy as well so we don't need to get upset. He is now 8 and knows almost as much about PSP as I do. His 5 year old brother climbs on his knee and wipes his nose and mouth for him and if he cries now, they both say, "Happy cry or sad cry grandad, thumbs up thumbs down". When they are around him it is always thumbs up.

    Your mum has to go through the grieving period, you may have to as well, but hopefully in the future you will both find peace again and will still have time to make many happy memories before the PSP progresses too far.

    Very best wishes

    X

  • Thankyou, mum was dads carer at home, they were both in hospital at the same time when he passed, you are right , stubborn is not the right word, more unaware like you say that she dies not fully understand her condition, she thinks it will mean she will just be I. A wheelchair, but there is so much more to it,

  • What a beautiful reply, I can relate to everything you say, I wish I could put it all into words just like you do, thank you for all your wonderful and wise comments xxx

  • Thinking of you. My kids find it scary too as mum's similar to your with added paranoia. But every so often she shines through the mask. Best wishes to you and your mum as you go on with the journey of life with psp x

  • Thankyou

  • Why don'. T you consider taking out power of atourney? That way you would be able to have a say and make derisions if and when your Mother becomes unable to do so. Also if she is getting muddled with her medication. I did this this for my sister as she was getting medication muddled and we had to keep it under lock and key.Think about this and good luck.

  • We have power of attorney with regards to money, we can make decisions if she is not of sound mind, we also have a lovely Parkinson's nurse who I am in contact with regulary so she is also helping with mum, I also am in contact with Nuro surgeon , it's just getting mum to agree to go into residential care to keep herself safe, she is very unaware of what this condition is going to do, or she is burying her head. Thanks

  • Hi,

    So sorry to hear about your Mum and Dad, what a awful experience for you to have to go through and I feel for you. We are all here to chat any time you want to, the people on this site are so lovely and understanding and they will help give you strength for the journey ahead, it's not easy but you will find the strength somehow to get through this...

    Thinking of you....Love Pat....xx

  • Thankyou

  • Thank you for posting you are not alone. My husband, who was a horse rider and gun shooter at the range was diagnosed May of 2013, and how fast this horrible disease has progressed, he is now in a wheelchair. It hurts me to be the observer and I would have it no other way. Our "normal" has certainly changed. My job is to adjust to that normal with a compassionate attitude.

  • It is nice to read other people's experience, there are no time frames to this disease, each persons longevity to this is differnt. Ticking time bombs

  • JULIIE, I KNOW HOW YOU FEEL MY HUSBAND HAD PD.H& DIMENTIA WHEN WE GAVE HIM HIS MEDS HE WOULD SPIT OUT THEM EVAN WHEN HE HAD THEM CRUSHED ,HE WOULDN'T EAT AT ALL. I KNOW HOW CHILDREN RE- ACT WHEN THEY VISIT ME. MY GRANDSON'S, WHO ARE IN THEIR TEENS AND 20'S ARE UNCOMFORTABLE AROUND ME I LOVE THEM DEARLY, BUT I NEVER FORCE THEM TO COME & VISIT. IT'S SO SAD WE TO BE ALONE SOME TIME JUST TO TRY AND REMEMBER THE YEARS WHEN WE WERE YOUNG & HEALTHY, WHEN OUR HUSBAND'S WERE THERE TO HELP US WHEN WE HAVE A BAD DAY, 'IM SO GLAD HE PASSED AWAY BEFORE ME ME HE ALWAYS WAS CONCERNED ABOUT ME EVAN WHEN SERIOUSLY ILL. HE WAS A WONDERFUL MAN. JUST KEEP TELLING YOUR CHILDREN STORES ABOUT GRANDMA THAT ARE ABOUT HER WHEN SHE WAS YOUNG & HAPPY. PICTURES ARE GOOD TO. 'IVE HAD A CD OF MY HUSBAND MY WEDDING DAY. OUR CHILDREN GROW ING UP RIPS WE TOOK, WE DID THINGS I HAD FORGOTTEN , IT MAKES ME CRY BUT THATB HELPS ME FEEL BETTER. HOPE I HELPED , I GOT CARRIED AWAY. GENA

  • Thinking of you, how hard this is, our older grandchildren understand but the little ones, it's harder. Xx

  • Thinking of you, and just agree with all the posts, what a wonderful place this is to be for support xx

  • Yes it is wonderful to talk to others in the same situation, unless you know of someone with this condition you cannot understand the unfairness this disease brings to the person x

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