I am feeling very sad after reading Satt post, brought back so many memories, good and bad, loss of empathy is one of the horrible things with PSP, I just want to scream, George seems like he does not care about anything. Our beautiful eldest dayghter is going through a terrible time, and our grandchildren, through no fault of their own, her husband cheated on her, and she is going through a divorce, George just doesn't seem to care, I feel like all the problems are on me, he takes no interest in anything. Oh there is one thing he says, as soon as we get in the car he says have you checked the oil, it does my brain in, feel like I am by myself sorting out, car insurance, house insurance, road tax, tax returns, odd jobs, leaking summer house roof, so many jobs, I have to worry about everything, oh how I hate this horrible illness. The end it all today George had to go to the hospital for his caterachs, only to be told he needs a scan and his diabetics checked, why oh why do we keeping going only to be told the same thing over and over again, this is the 4th time we have been told this, I told the doctor with this illness George has not a lot going for him, so he needs to be able to see. I said to her George has PSP have you heard of it, she said yes, I gave her a card from the PSP society, she briefly looked at it, she said that helps and went to give it back, I said no that's for you, she is going to write back to the doctor, let's see what happens, so fed up with fighting George's corner, they don't seem to care, looks like a visit to the doctors again with my boxing gloves on. Sorry for the moan, just feeling a bit down, had a really bad night last night, so tired but can't sleep. Yvonne xxxxx these are one of the reasons I keep going,
Sad time: I am feeling very sad after... - PSP Association
Sad time
Lovely photo Yvonne you should be very proud!
I'm sorry you are feeling this way, I understand exactly what you are going through and wish I could come and give you a big hug! It's so frustrating, I hate everything about it, I've had one of my crazy, screaming, bad tempered evenings again, I try so hard to be patient and then I snap and all good intentions are out the window! But when you stand for ages, use a full loo roll and a pack of wipes and still it doesn't end well I would defy a saint to keep calm!
I'm thinking of you Yvonne and hope your daughter will be alright, it's so upsetting for you and I'm sure with no support it's even harder! Keith's like that, he doesn't seem interested in anything and never shows any emotion, so sad.....😢
Sending you a great big massive hug......Love Pat xx
Thank you Pat, it is such a hard job this PSP, I do try really hard to be calm, but when you are tired, everything tips you over the top, George keeps calling me, when I go over to him, he has either forgotten what he wanted, or I can't understand what he is saying, sending you a bit hug back. Yvonne xxxx
Oh my, that was us Tuesday night, exactly! I am so embarrassed by my tantrums, but gah! Today was better. On we go. Love, ec
Beautiful women, and worth going on for. Hang on. But I know what you are going through, right down to the oil and the leaky roof. Same here. Exactly the same! Almost freakishly word for word. Hugs. Love, ec
Love the picture Yvonne! You talking about your man's lack of empathy brought back all the pain of Bruce's inability to show any form of love when I need it most...And his apathy seems proportionate to my need for his love and sympathy.....I kills me. Last year I had to start doing the bills on my own.....OMG! But now I am getting more used to it....And the doctors and or medical staff.....I don't know, I should be inured to their ignorance... but you don't have a lot of time with them and it's hard to teach them how to care in the 15 minutes you have with them so again you leave the office drained and without answers or a friend.........except one ....and I am constantly praying and being lifted up and given a little strength for tomorrow and I go on....So will you ...we are both tough chicks
I am so sorry for your daughter....she too will go on and so too will those beautiful granddaughters.....
I do have to ask , will cataract surgery really help your husband? I don't know much about cataracts...but I hope it does help...
Take care Yvonne, sending you big hugs to and yours
AVB
Hi Yvonne I have just woken up this morning with terrible neck and shoulder / back spasms I think I get tense then my muscles all go at once. Am sorry you having a bad time and I am wondering why you are doing road tax etc and worrying about the car! We have a lovely Ford Ecosport on the motability scheme and we dont have to worry about insurance , tax or anything. Is this something that you should be getting??? xx
When you are over 65, like Chris you don't get any help with transport. Because the car had been taxed in Chris' name I didn't get the no-claim bonus.
x
What a lovely photo Yvonne. It's so cruel when this PSP takes our loved ones away but leaves someone who needs us, relies on us but gives us very little in return. With my darling, he appeared/appears to have no empathy or interest in anything but when I told him last week that a friend had died he gripped my hand hard and a tear trickled down his cheek. I think with him, it wasn't that he didn't want to have a interest, he didn't know how to show that he did and couldn't organise his thoughts quick enough to respond to what I was telling him. Like you, and all those caring for folk dependent on them, I also have to do everything. The thing I found the hardest was driving. I rarely drove before C was diagnosed. Like you I had to sort out road tax, car/house insurance etc and I was angry and frustrated when yet something else had to be done. It took time, but I grew to except that this wasn't going to change so started to think of every new thing I did as an achievement and still do. I give myself an imaginary pat on the back and sometimes a congratulatory glass of wine and feel proud that I've done it. Us Brits weren't brought up to be proud of ourselves but this awful PSP has changed me completely. Like you, and all of us, we now have to fight for what we want and can't leave it for our partners to sort out.
I'm very sorry your daughter and your grandchildren are going through such a dreadful time. It doesn't matter how old they are, they are still our children. Mine haven't gone through a divorce but they have had various problems over the last 6 years and it was heartbreaking knowing I couldn't help other than be a listening ear.
C doesn't have cataracts but he very soon lost the ability to read or focus on the TV. I hope when George does finally get the op, it will make a difference.
Try and cat nap during the day when George is dozing. If I've had a rotten morning, I will sit down when C dozes and can now drop off almost immediately. The other day I thought I'd slept for hours, jumped up quickly to check on C and found I'd sat down 20 minute earlier but I felt so much better than I did 30 minutes before.
Sending you a big hug Yvonne. Think of the new tasks you do today as achievements. My latest new task was buying a fitting a new toilet seat. The chap who sold it to me said it would be easy to fit and will only take me 10 minutes. It did......but it took 45 minutes to get the old one off but I did it. Yeh! 🏆
X
Lol! NannaB,
I can sooo relate. I battle every day as to nap when my sister naps or enjoy the time I have alone to myself. Such a dilemma.
I, too, attempted to replace a toilet seat, but I wasn't so successful. LOL! First off, my dear father, in his old age, cannot hit the inside of a toilet to save his life. I have been trying to find any "trick" I can to get him to take better aim. Well, I found it, I hope, a toilet seat that has a night light. LOL! However, when I tried to put it on I had to fight with the light to get it too work. Then, when I went to actually put the seat on, I found out to my dismay, that I had purchased a "round" seat for my "elongated" seat. Now, I pack it back up, take it back to store, find the right size and find time again to put it on. Nothing is ever easy. Not even toilets. Lol!
Sometimes you just have to laugh, out loud.
Becky
Don't laugh but I googled " How do I replace my toilet seat" and it showed how to measure the seat so you get the correct size. I went to a local hardware store and said to the man behind the counter, "I don't suppose you sell them but...". He then stopped me and said, "No madam, you don't say that, you say, can you tell me where to find the......". So I asked where can I find the toilet seats and he told me to follow him to where they were. I then got out my piece if paper with the 3 required measurements on and he said I didn't need that as they were all roughly the same and would fit any toilet. I bought one and it did but it doesn't sound as if it would have fitted yours. I hope you manage to get another one. The night light sounds amazing. I solved the problem by persuading, and it took a lot of persuading, my husband to sit down each time. He did eventually get used to it.
X
Oh, the battles I've had getting Chris to sit down. I'm screaming at him and pushing him down, whilst he's grabbing and aiming !!!
Not a [pretty sight !!
x
Oh I remember it well. I used to put a wide necked urine bottle over it as I tried to sit him and then whip it away if he did sit. Eventually he just let me hold the bottle to him as he got fed up with the battle every time; so did I!
X
Good idea . I've got the bottle but didn't think of it. As long as I can stop it coming over me or floor !!!
x
Poor you Yvonne, this disease sucks doesn't it? Dealing with all the admin, car, builders etc etc wears me out. I always hated admin but you just have to get on with it, I have a pile of papers that need sorting out but am focusing on building work at the mo. There were 5 different workmen in the hall yesterday trying to do different jobs to get the wet room and utility room completed. Nearly there thank goodness but will miss the banter. As for the lack of emotion and empathy, well there's another tale, Ben tries hard to try to show that he listening and empathising when I tell him something that would have roused emotions, he briefly comments and then gets back to watching tv and I'm left thinking I know he doesn't really give a jot. Onwards and upwards as they say.
Sending you love and hugs.
Kate xxx
Awwww,i know exactly what you mean.D only bee n back from respite 4 days and ive already shouted at him,feel awful,but you are in a state of despair.Got into bed for 5 mins then had the knock on the wall so went in and cos he cant speak took ages to fathom his need.Atropine drop!But i had asked 20 mins previous and he didnt want one!Woken up by the knock on the wall this am and i was fast asleep and just didnt want to get up.Dont beat yourself up,you and all of us are so qualified at doing so many things ha ha.What would we choose as a new profession if we had the chance?Must go i am on toilet duty again! xxxx
Know what you mean Yvonne. My son is also going through a nasty divorce. I really fear for his wife's mental state and the effect on our grand children.
Chris was always really involved in life and his apathy is painful for us all.
He also asks if I have petrol. Checks I have money too.
Hope things improve today. I spend a lot of time at present spraying the house and burning candles !
Big hug, Love, Jean x
Hi Yvonne, I nearly didn't reply, everything you have said, I could have written!!! At the moment, my car is waiting for a spare part, a load of electrical works needs doing of the house before winter, I have a leak in the conservatory, Internet constantly needs attention, lap top needs replacing, to cap it all, my boiler has to be replaced, with all the upheaval that's going to bring. What does S's son, who could arrange all these jobs from our staff, say "Who's going to pay for this?" Thankfully, I am still on an even keel, from last week's respite and S has been OK this week, (so far!)
When people ask if they can help, these are the jobs we should be setting them, but I bet you don't tell anyone, any more than I do. Honestly, I am my own worst enemy, I don't need PSP to do its dirty work, I do it all for him!!!
Oh well, tomorrow's challenge!
Sending big hug and lots of love
Heady
Thank you all of you for your replies, George has gone if to the centre, I am sitting here with a cup of tea, thinking about my car insurance, it has gone up so I was looking for a cheaper one, got another five days, did the road tax on line yesterday evening, just looking at jobs that need to be done!!!!! Heady I got my ladder out propped it up against the wall, put on my apron put the nails in the pocket, got up there with my hammer knocked all the felt back, felt good after I did it, I was fed up phoning the roofer, going to try and fix the curtain pole today Good luck with all your Jobs. S son should be offering to do the jobs, to help you out. Mine children always say why did you do that mum, you shouldn't be up the ladder, but have given up, I suppose they are all busy, I am to proud to keep on. Love to you all Yvonne xx🔨🔨🔨🛠🛠⛏
Way to go, Yvonne! Nothing like a bit of hammering, is there?
I hear you Yvonne. I am also feeling it these days. There is so much to have to organize and do. All the focus is on the husband. One of my husband's new care aids got one look at me the other day and told me to sit down put my feet up and she would make both of us a cup of te. I broke and cried. The first time in almost 15 years that someone noticed how all this was affecting me. I put up a brave front all the time but this kindness undid keep me. Hugs and strength for tomorrow. God bless you.
Yes sometimes we are forgotten, until be break down. Look after yourself xxxxx
Talk about relating! Yvonne you are living my life or I am living yours...the same thing. I noticed the lack of empathy a while back so researched and found sure enough it is part of Parknson's. I am in pain a lot from arthritis and never does my husband ask how I feel. He use to (before Parkinson's) be so caring so this is just one more thing one has to deal with, with this horrid disease. The other thing I find has disappeared from his personality is appreciation and a simple thank you. This polite guy I've been married to for 59 years who always thought of everyone else first, comes across totally self centered. I realize this is all part of the disease but sometimes I rant and rave. He looks at me like "what is she talking about!" I try to remember how he was BEFORE Parkinson's. So sad........I pray to God alot for patience but think sometimes "HE" is not listening. You are in my thoughts and prayers, too, as we share this sad chapter in our lives.
HUGS !!!!
I'm so sorry Yvonne for making you sad, wasn't my intention!!!! I get where your coming from 110% and can only send you my love and hugest hugs!! You will keep going!! We all have too!!!!! X
This is a great place to vent--I have had my shares of venting! Ugh!
Lovely photo Yvonne and sorry to hear about your daughters divorce--no one needs to be with a cheater! She is young and beautiful and good things will come, just watch! For you, what a stressful time because it is all on you to carry others through this tough time. The Lord wouldn't give you anything that you couldn't handle. Women are amazing--you got this!
My husband Les passed almost two months ago and I am trying to get my life on track and get a handle on his business and other issues. I know I will be okay, but talk about lonely and stressed. I am constantly asking myself what to do about this or that because he took care of everything up until 5 months ago when I finally found myself like you (as your post says) and just had to make the decision to take control of it all. There were too many little surprises and he was confused and said he didn't know the answers. I am sure George cares but he feels helpless. I stopped telling Les about major stressful situations because I thought it would just bring him more stress and knew he didn't need that for his health. In fact, our son was in a car accident in June (couple months before Les passed) and I did not tell Les. The car was totaled, but I knew that he would worry so much and didn't want to add more to the already hellish PSP experience.
I am thinking of you and will add you and your family to my prayers tonight. Hang in there! Huge hug going your way.
Nikkie
Hi Nikkie, lovely to hear from you. I don't tell S anything any more. He did have to know the boiler needs replacing, now he is worrying about the cost. I think he is concerned I am spending too much money, what with the alterations to the house, new car etc., etc. Hey ho, I am in charge now, so he will have to learn to trust me. If we run out of money, it will be me living like a pauper, not him.
Things will pick up for you soon. Tying up all Les's affairs, must be hard work. As hard as these tasks are, it is giving you something to focus on. You are going to be feeling how you are, regardless, it's nice to have a coat hanger to hang them, leaves you free to get on with others.
Remember our shoulders are always here for you, rant and rave. You may feel you will frighten or upset us, but like everything else with PSP, we need to know how to get over that final hurdle.
Sending very large hug and lots of love
Heady
Heady
That is right--you are in charge! That transition period from our loved one surrendering his responsibilities and us taking over was a tough one for me. I never wanted for Les to feel like he had lost control or that I didn't respect his input. It was tough. Some things I told him and some I just didn't want to worry him. This site is my therapy because you all get it...we are all traveling the same journey. Know that you are in my prayers.
Love that very large hug!! Les gave the best hugs! Miss him so much.
Love,
Nikkie
Undestand that sentiment. Had a very small glimpse of S the other evening, tears rolled down my face, told him how much I missed him and that I still loved him. It's so cruel, he is sat a couple of feet from me, yet I can't reach him, or more to the point, he can't reach me.
Lots of love
Heady
Heady George asked me today if I loved him, I felt a lump in my throat, I said yes, after that he seemed to relax, then when he started talking could not understand him. I just home from the hospital and an appointment with our doctor Professor Morris, he was pleased with George, yes things have got worse, but he seemed pleased, such a lovely doctor, he is so helpful, takes time with you, we were with him for 45 minutes. It took us over two half hours to get there, but more than worth it, also a lady from the PSP society there she was also lovely. Took us one hour to come home, really full filling day. Xxxx
Glad you had a good day at the hospital. We had to go last week, total waste of time, said I wasn't going again. Didn't help, they closed the main car park, so nowhere to park!!!
It's sad isn't it, when they start chatting away and you can't understand a word. On a good day, S will either talk or write on his white board, I rarely understand, instead of big capital letters, which I keep insisting, he writes long hand, very small, with a huge pen. Mostly it's a straight line, then he gets frustrated because I can't read it! I wonder if he is seeing something I am not.
Enjoy your high, while it lasts!
Lots of love
Heady
Yes I know Heady will all change tomorrow our maybe today. George does not write anymore, his signature is bad, waiting for doctor to come back to sign power of attorney xxxx
Yes, I have just hit that brick wall! S is refusing to take his medication. I am doing something wrong, but Gods know what. Now refusing to communicate at all. Dog won't eat his dinner, so I am climbing the ceiling. What's wrong with me? What on earth am I doing wrong? I have been in quite a good place since the last respite, very patience. There has been no reason for him to start this nonsense again. I thought I had even found something to mix his medication in, that worked. (Well it did until tonight!) White chocolate spread. But NO!!! "Barbara at the nursing home doesn't have this problem," (his words the other night!!!)
I just want to run and run and run!
Lots of love
Heady
Oh heady that is so frustrating.My husband does not even see me most days.when the care aids come he is very nice to them and polite. I have been wanting make a run for it too. I am tired of being barked to do this or that never a kind word. Than this morning when I woke up R was staring at me and when I opened my eyes he said you look so cute with your hair all messy like that and that he loves me. I guess I will stay around for another week. It has been years since he has told me he loves me let alone coment on how I look.Hope something good happens for you soon. Hugs.
Heady it is the PSP that is doing this to S, I bet deep down he wants to say I love you, and thank you for looking after me so well, but this PSP has taken it all away, you just have to remember the good times PSP can't take that away, say me who has lost all her patients, chin up Heady. Big hugs Yvonne xxxxx
Hi, thanks for that. I did send him to bed with a huge flea in his ear. Didn't help the night carers didn't turn up. Took a sleeping pill, so I didn't lie awake all night thinking. This morning tried to get him to tell me what's going on, he wrote, " I was being awkward """sorry""""
That's a first, EVER!!!!!!!!! So I guess good things do still happen.
Lots of love
Heady
Oh Heady I bet that meant a lot, hope you are having a good day xxxxx
That breaks my heart Heady. Why does this disease have to be so cruel. The whole family is impacted by this disease and what it does to our loved one is steal one part of them daily! Awful! I know they love us but it's the disease that just takes control. A huge hug and lots of love.
Hang in there my friend.
Nikkie
Just come in from taking S and my Mum (she has Alzheimer's) with my sister, to the Zoo. Had a lovely afternoon. Mum had never(!!!!) been to the zoo before, so she says, it was like taking a toddler, who was grateful! Very funny. Did give up the will to live on the way home, while she kept trying to remember where she had been.
stress levels back down to normal, but it's pill time and dinner, so no doubt, it will start rising again very soon. Oh well, it's what white wine is for!!!
Thanks for your support Nikkie, it means a lot. knowing what you are going through, yet you still have the time and the patience to help us.
Lots of love
Heady
Heady George also thinks that I am spending all the money, but had to do things in the house to suit him, feeling frustrated xxxxxx
I wonder what our men would say, if they suddenly came out of this fog. I'd like to think S would be proud of how I am handling the finances and all the alterations. But I know from the odd comment he has be able to make, he would have done things differently!!! Hey ho!
Lots of love
Heady
Oh well Heady we know we had done well, finding the highest interest rates, finding the best builder, getting things done with no hassle, coming in on budget. Well I think we need to pat ourselves on the back, sending you a massive hug. Yvonne xxx. Also managing to hold the family together with everything that is going on. Xxxxx
I agree! I know the alterations I have done are brilliant. Everytime I walk through my hall, I think, why didn't we do this years ago! Planning my next change to the house now. The boiler needs to be replaced, which will mean the the cupboard hiding it will have to be altered, therefore, so will all the others. Lots more money to be spent, think it's going to my head, all this power, no one to argue with, it's all my choices. (Still wish he would get up off his backside and help me though!!!)
For the time being, yes we ARE doing a fantastic job. Drinks all round!!!
Lots of love
Heady
Cheers Heady xxxx
