Hi, I have been having a really rough time recently, just can't cope, tears flowing, screaming continually. I haven't got time to breath, then as if things couldn't get any worse, the rest of normal every day life steps in. Who on earth as time for that????
A niece of my Ex died of Cancer aged 44. Stepchildren problems, as if any of us as time to be bankers as well! The dog has been very poorly over the last few days, Vet doesn't think it's one of my socks, just a viral infection, poor little lad didn't eat or drink for two days, can just about manage a bit of chicken now, if Mummy feeds it to him. Still, cleaning up after him and wiping his bum, is a piece of cake, far to use to doing that these days.
I don't know if S is worried about something, but he has started falling again, at least once a day. Even at the peak of his falling, he only just managed that! I don't know where he is going, but as soon as I turn my back, he's off. It's quite frightening, I return to where I left him and he's gone, either flat on his back, or in another chair, or this evening standing in the doorway. Last night, put him to bed, sat up chatting with my sister, enjoying a glass of wine, when I went to bed, found him on the floor, the wrong way around, who knows how long he had been there! Has gone to bed tonight with a lump on his head from where he got up from eating his dinner and went flying. I thought it would be safe to leave him, whilst eating, for a few seconds! Wrong again. When I ask where he is going, he looks at me as if I'm stupid, but can't tell me. So far he has got away with the falls, only this little bump on his head.(I am touching lots of wood, he takes warfarin!) but his luck must be wearing a bit thin by now. His movement does seem a bit better at the moment, he is transferring fairly easily, do I get his walker back out and risk a big fall, or has any one got the address of a good company to get some heavy duty restrainers!!! Not sure who needs those the most, S to keep him still, or me to stop some serious violence!
Lots of love
Heady
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Heady
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Oh Heady so sorry you are having a bad time, I think we are being tested with all these problems we get, one thing after another, is it making us stronger, our trying to put us in a mental hospital, well at least we would have a rest!!!!!! So many things going on for you at the moment, maybe you need a break? George does try to get into the bathroom, holding on, but can't get back out, I find him sweating and upset, but he won't listen and not do it, he had a bump on his head also where he tried to get up and fell over. How is S talking, George you can barely understand what he is saying.
George has got a whistle blows it if he needs me, sometimes I feel like jumping on it, but it means I can hear him in the night, if he wakes up.
Heady sweet dreams and I hope tommorow is a better day for you, sending you a big hug, dry your eyes, you are a very strong person, you can do this, you are an inspiration to us all. Yvonne xxxxx
Hi Yvonne, read all posts quickly this morning, thought the whistle was a good idea, meant to buy one when I was out, but like a fool, I forgot!!!
Dog is on the mend, starving hungry, S hadn't falling yet today, but I have only been in for the last hour!
S's communication is virtually non existent, occassionally I understand a grunt or deep breath. I rely on thumbs up or down and pointing for the loo, most days I am lucky to get that much.
Sorry you are having a rough time at the moment Heady....what do I mean, at the moment, it's all rough isn't it. It must be scary with S on warfarin. Colin managed to gush blood on many occasions and he isn't on warfarin. I do remember how hard it was in the "can't take my eyes off him stage". Have you got pressure pads on the floor by his chair and on his seat and a baby monitor with a camera on him? I saved so many falls by seeing and hearing when C was on the move.
And there was me thinking I was the only one going though this family life and psp how do we mix the two big hug coming your way heady looks like we are on the same path tonight lots if falls and not making it to the loo in time 😩💩🍷
I'm not sure Heady, How long has he not been walking....This sounded like B on good days maybe about Pre christmas times.....maybe especially summer! Then around time of Peg and most definitely about 2 months ago he slipped into wheelchair mode....
But it sounds like S is "reverting" back to walking?
How about talking to him that he can't go anywhere, and you mean anywhere, without you, period!?
I didn't like my last reply so here goes yet another one....hope it's better
I'm sorry Heady...It doesn't stop does it! And as if you don't have enough your stepchildren need you too? And then there's the dog.....cripie....I know you're stressing out, and how can you not? But you are going to get through this! think about it...You always get through it. You have resolve now just breath deeply wipe everybodys bum and pour yourself a glass....
Poor Heady, it seems when we think things might be getting better everything turns to shit, pardon my french. With D breaking his femer he is now in rehab. Thank goodness he made it through the surgery with his serious heart conditions. Now praying he will be able t walk.Then our central air goes, couldn't be fixed cost a bundle to put in a new unit completely. Horrible abut your niece, so young. Oh yes, one of our dogs is having issues. He has seizures. Supposed to see the vet tomorrow, he comes to the house. One of my other dogs is pulling his hair out on his back. Than I get the runs, eating the brat diet to not fall down. Your not alone dear Heady. We are all being tested.
Heady, just spoke to him and he hasn't a clue of where he is. Not a good day Yup, life is definitely meant to try us. He is worth every penny but I am so freakin tired.
So is my husband. And I stopped going to the hospital when he feel because they always made him get a cat scan and we would be there FOREVER. I understand their concern (as he could bleed internally) but it was still a pain.
Our doctor discussed warfarin but in the end we decided the risks outweighed possible benefits, even though the falling is less frequent now. I like the doctor a lot, and he generally is trying to help us to the end rather than to pretend he can prevent it.
ec, he needs the warfarin since he has afib along with his being 100% dependent on his pacer and defib. He has a lot off issues along with psp. Our doctor doesn't play games either. Spoke to D this morning at rehab and he had no clue of where he is. Good days and bad. They tested him with 30 questions to access what he knows and he got 27 correct. Today is just a bad day.
I think that 's why B's doctor just does what we tell her....more of a palliative thing....I like her for B...(Her brother had a pot farm up in Colorado......Not a terrible way to make a living....it's just for medical purposes....Though I believe that what should only be for)....so she's pretty cool...
I don't smoke any more missy...In fact I gave it up when I took the Lord....I was 17! (You know how many years ago that was?) Hahaha....but again my philosophy about it is not negative. I believe we should have outlawed alcohol.....it kills you in more ways than one....uhoh here I go preachin again..hahahahahah
That's us exactly, Heady! What is it, phases of the moon? Suddenly my guy can't sit still, and he is back to falling after months of being safe in a wheelchair. I get him nicely tucked in bed and return to find him somehow all the way around to the foot and on the floor. He had to get up out of bed and walk to do this, both impossible things!
My voice is still broken from the weekend, so no screaming. That's one good thing....
Love to set up a webcam and film what happens, even if it's just to show him. I don't know if you have seen an English comedy programme, called Little Britain? In it is there is a man being pushed around in a wheelchair and every time the Carers back is turned, he is up doing crazy things. Must be based on PSP sufferer!!!
Could definitely done with your place up in the woods, I too, would not have a voice!
Sending you a big hug, I know how you feel, I often think this illness will see me locked up or sectioned!
I'd been seriously thinking about getting a dog, after we move house, your putting me off, maybe a black cat would be more appropriate!?
Hope you feel a bit better today, but realistically that's probably unlikely, i feel like I would cope with this sh*t a bit better if every now and again I felt appreciated and special, instead of so taken for granted!! Fetch this, do this, feed me, help me with the toilet, deal with the consequences when I've done something stupid and fell over!! I have to tell myself he can't help it but that doesn't help me!!
At risk of giving grave offence to a wide swathe of dog lovers, when Heady mentioned in a post she was getting a pup I bit my tongue but thought it will merely add to an already busy schedule. In fact I now look upon dog ownership as a self-inflicted injury.
It’s not that I’m without experience, over the years we had many dogs, for a brief period we had four at one time, all of them from refuges or unwanted, all of them delightful (in their way) but they do involve quite a lot of care. I found caring for my wife, with excellent help from social services, was as much as I could manage. I certainly wouldn’t have wanted to add a dog to the mix.
If you would like the calming effect of a pet I think your idea of getting a cat may be a less challenging choice.
Yes, you are right, the dog is extra work and hassle. But oh, oh so worth it! He is a complete nutcase, charges around the house, with some squeaky toy in his mouth, drives me nuts, but it's life, new, precious and happy. He makes me laugh out aloud at some of his antics, gives me big sloppy kisses, shows me he loves me. I am forced to go out into the fresh air, to take him for a walk. I have something else to think about apart from PSP.
Yeah, the odd thank you, a blown kiss, or squeezed hand would work wonders. Hey ho, we both know that ain't going to happen!
Dog is a great idea, I know I could have cheerfully swung for him one more than one occasion. Especially at the beginning, when S and Ollie were having a competition, who could pee on the floor the most in one day! But he is wonderful company, always making me laugh. Because it's just me looking after him, he thinks I am the bees knees, he does make me feel very special, at times. Which is priceless, funnily enough, so was the Vets bill this week!!!
Debbieann, Thank you for doing all the stuff you do. You know sometimes you just have to send yourself a bouquet of roses. I wanted to watch opening ceremonies of Olympics without a bat of an eye he informed me we were not ...no reason why...but I think he felt bad if infact he can feel bad and so flipped back and forth from his show to what I wanted. We are wonderful people Debieann, we deserve some appreciation, even if it's just from ourselves But this time it's from me to you.... thank you, you do a great job
I was asked at the hospice this week, how I was, said not good, but I could cope, if the rest of life didn't get in the way. It's terrible, isn't it, how small a thing it takes, to knock you off the perch, big things, well we don't stand a chance.
Hi heady sorry that you are having a bad time. As you know it will pass but in the meantime it is there to drive you nuts.
Take a deep breath after the swig of wine and tell people to get off my planet if your not here to help.
1st of get hubby strapped in his wheelchair and get some fresh air together. I know Brian is way past the movement stage (only one hand/arm moves now) but i used to put him in his wheelchair and take him room to room with me he stayed still that way. Now i take him with me to shut him up. Since he got his voice back he keeps calling to ask what are you doing or where are you..... i don't think they like tobe on there own. Try looking on line for safty straps for adults either that or use your washing line (either to tie him in chair/bed or to peg him up so you know where he is.
Condolences over the death of your niece it is hard when it is someone so young.. just grieve for her but remember she is no longer suffering.
If the step children are not helping on any level tell them to come back when they have got thier helping head on and you don't have time to sort out their problems untill they can spend time sorting out your problems.
If none of the above is any help just open another bottle of wine.
Love the idea of telling people to get off my planet, even better after a glass of wine! Isn't funny, how our loved ones seem to be regaining certain things. S's movement is the best it's been for a long time, if I thought I could stand the strain, I would get his walker back out, but honestly don't think I could.
Oh Heady, sorry you are feeling out of sorts-it happens to us all.Why is it when we are so overloaded that others come out of the woodwork with things that can't wait that need to be addressed NOW! And the Dog... be still my heart. It will all be ok in the end. And if it is not OK it is not the end!
I can't add anything to the posts above so really just waiving saying we understand and its horrid.
I went to bed almost in tears last night after a day where my lovely just did loads of stuff to make caring harder and asking her not to do something had no effect at all.
Hoping tomorrow might be a better day foir all of us.
Kevin have you tried saying well if thats what you want to do just get on and do it. She might think twice if she thinks you're not bothered about it. Reverse psychology. ... Janexx
What I am supposed to do (our plan) is say that she get's the care she needs when she calls me + meals. Otherwise I keep out of the way. It's the same behavioural approach you suggest. Except I have long found that Behavioural approaches do not work with PSP in terms of changing behaviour. ( I know as a therapist who has worn the book of approaches out quite thoroughly on this one).
What it would do is to protect me... I'm just rubbish at doing it and being fair to myself I was taking her to hydrotherapy.
The thing that crashed me was that after three hours of minimal contact I went to check on her and she looked so miserable and quiet... I lent forward and gave her a kiss and a hug... she responded likewise and then sat back back and laughed in a very unpleasant manner. I later asked why and she was quite abashed and said she just didn't know.
Oh how i hate that (I've won laugh) it's almost as if they know they should be saying sorry but can't/wont make the 1st move. So we do (and years ago when things were different and the emotions were not so distorted) it would of been a coy little giggle perhaps a hug after wich ever one backed down first had apologised (not necessarily the one in the wrong) I get round it by calling Brian Mr Ming untill he says sorry wich isn't normally long after the said upset. It's like I'm saying to him if you want to treat me like the hired help i will act like the hired help and he doesn't like it so he does say sorry.
Also if i think he needs fluid i will say I'm just going to put the kettle on and you don't want one yet....... before i have left the room he is shouting for tea.... good fun
Hi Kevin, I agree with Jane. I am often yelling at S,if you can't be bothered to try (xyz) then nor can i! It surprising how quickly, what ever it is, gets done! Last night, when he was floor hugging and couldn't/wouldn't move, except to put his hand up, for me to pull him, I got cross and threatened ambulance and A & E, got up without too much help and started to respond to me asking if he was hurt. I hate calling wolf, but if that's what it takes, then I will have to carry on.
That laugh, it must be PSP, S is always doing it to me as well. I think a punch in the stomach would hurt less! The effect is the same.
Lucky you! My cycle seems to be, "right, what can we throw at her now", still soon be wine o'clock, then everything and everybody has two choices!!! As jzygirl said, Get off my planet!!!
I know how it is!! Charles is 6 feet 4 inches and he's as quick as a jack-rabbit. If I turn away he's gone. Faster than you can imagine. This morning his caregiver said he's very impulsive because we have a doctor appointment. Their brains are ahead of their feet. That's PSP for you.
I don't have a dog but my caregiver brings him, puked on my carpet yesterday. Fun.
Joining you in hugs, a giggle and total understanding!
Yesterday my daughter was looking at a nursing home, for respite for S. The manager, was explaining that they had a patient with PSP, saying how movement was nonexistent until her back was turned. With that there was a crash from the next room, when she came back, she was laughing, saying it was her PSP patient!!!
What is it about this disease? No wonder all Carers are at the end of their tether!!!
Sending a big hug. Dealing with PSP is enough to stretch the patience of a saint so too much real life too ouch. Hope the dog is soon back on form and can give you a much needed bit of entertainment in the interim iI would go for a nice glass of chilled white!!!
Hi Heady just reading your post now. Sorry you are having such a stressful time right now, but I think you are one of the most strongest persons here and I know you will pull through. You always do.
Sad to hear someone so young has been taken out of this world because of cancer.
I hope your little dog is recovering and soon you will be laughing again at his antics.
Ollie is recovering, starting to drive me mad again, which has to be a good sign!
Thanks for your vote of confidence. I'm not the strongest here, I think we are all on a level playing field, anybody caring or living with PSP and survives that particular day, in my book, has to be an exceptional person.
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Yup, life is definitely meant to try us. He is worth every penny but I am so freakin tired.
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