It’s so hard sometimes because I think he is still in there and knows what’s going on just can’t express it. Like he knows he has psp and FTD and that is why he doesn’t want to go anywhere. But then he will say something to me that is hurtful and mean and then laugh about it.
Sorry just feeling sorry for myself, hope everyone has a good evening.
So hard and so sad, I’m experiencing exactly the same, he says horrible things over and over again. Just remember it’s the illness and not him, and I know that’s hard, but he doesn’t mean it.
Love and hugs Helen xxxxx
Hello Penny, what you are talking about is exactly what is happening with my mother, her doctor said that they feel bad from inside because they know what is happening with them but they can’t express it due to muscle stiffness that prevents that. I really hope they get better .
It is so very hard not too take these hurtful comments personally but please try not too. The laughter after an unpleasant comment is the key reminder that this is the disease talking not your husband. The emotional imbalance and personality changes are so very tough to deal with.
I started doing my 3 beautiful things - everyday actively looking for something lovely, funny, beautiful ( flower, animal, music on radio, chat with a neighbour, text from friend, photo etc) during the day and when going to bed would reflect for a moment on them. It took a bit of practise to remind myself to look for these but really helped me remember that even on the challenging days there was something beautiful. It has become a habit that I still do without even trying now.
Sending lots of love and a big hug to you( and Helen ) and everyone in the same challenging situation.
Tippy xxxx
Thanks and I do know it’s the psp but it’s just so hard. I want my husband back.
I so agree with Tippy, this brings back so many memories, George use to say after one of these episodes of being nasty and laughing after saying horrible things, but he would say I am crying inside, he is still there, remember he is hurting just as much as you, PSP is a vile illness. Sending you a big hug Yvonne xxxxx
We always hurt the one we love the most! PSP hasn’t changed that, in fact it has made it worse. Unfortunately, this symptom is something we have all experienced at sometime. Give him a cuddle and say, “I love you too,”
Are you getting enough help and rest? Tiredness makes this part, so much worse. Get more help today! Phone someone now, whoever, social services, the GP, family, anybody you have contact with. Consider getting some respite, where your husband goes into a nursing home for a week. I found this invaluable, gave me time to breathe, sleep, generally get back on top of things. This isn’t failing, just you realising that you can’t do this alone. That’s strength in my book.
Sending big hug and much love
Lots of love
Anne
As usual Anne - good advise.
Tim x
Thanks Tim, how are you? Or is that a silly question?
Sending big hug and much love
Lots of love
Anne
PSP is beating up me a little more these days. It pushes me and I shove back. I was content playing hide and seek, but now I'm running out of places to hide. A need to come with new game, until then... I keep on, keeping on.
Tim x
I remember when Steve and I played that game, when we went to South Africa. Sometimes managed a whole two days, before it caught up with us. I don’t know who who paid for the air fare!
Lots of love
Anne
Dear Tim - So sorry you are having to fight so hard, so glad you are so good at fighting. Sending safe long-distance hugs and wishing you lots of ice cream.
Love, Sarah
Thank you Sarah. I don't mind fighting, I've done it since the day I was born... always up to a challenge.
Tim x
Sometimes we just need to cry or we could drown from the inside from all those bottled up tears. You are doing the best you can... keep up the good work. My mom's ugly words could cut like a knife... l usually just walked away so she could not see my tears & reminded myself the words were a part of PSP. Sending hugs of encouragement... Granni B
Thank you
Sometimes they get strange delusional thoughts in their heads and say hurtful things. It is the disease. You are doing the best you can. That’s all you can do.
Just the same ... delusional thoughts .. told I’m a nasty woman ... that I’m mean ... all because I can no longer lift him or take him out in a wheelchair on my own when he’s wanting it . Tough but yep it’s PSP . Turn away , leave the room if it’s safe to do so , just give yourself a moment and then it’s back into the Frey x
Hi Penny, I feel for you PSP is a horrible illness and it's so hard watching your loved one deteriorate before your eyes.My husband has been in care for 16months and I feel guilty every day that this happened as I have worked in care for 25 years , and still work 2 shifts a week as reduced my hours 3 years ago to look after my husband. He was falling every day And had no safety awareness so I couldn't turn my back?? He was diagnosed 6 years ago with Parkinson's disease but then in May 2 years ago the consultant thought it was psp. I never saw him for 4 months & now have had 4 half hour visits outside. He doesn't speak anymore and has lost more weight during lockdown. I feel sad I can't touch him or give him a hug, it's very sad.my daughter & son haven't seen him for 5 months. He still manages his meals with assistance & that's his only pleasure. Take care & this Forum is great for supporting one another. x
You have one advantage over me ... he can still talk some. When Esther looks at me I also ask if she is in there but no response at all and doesn't talk. Hang in there.
Life
One life.. Live it
My J
