I have this feeling that i now live in a goldfish bowl. Swimming around getting nowhere fast.
people in and out asking questions have you been out what have you done today what did you have for dinner? and commenting on all sorts of things oh you've moved such and such oh a post card who's on holiday each time i put a new shower gel in the bathroom someone has an opinion on the make scent or colour and body lotion the same thing. I know they are only being sociolable but for a self contained couple it is hard to have to share our world with a load of strangers.
I am scared because the last couple of days i have been struggling to cope with Brian he has been very hard to stand and transfer and i don't really want to have more people in and out but i don't want to injure either of us. what a whining moaning person i have turned out to be. Janexx
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jzygirl
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Hi jane don't think you are a whining moaning person, it is so horrible this PSP what we go through, different things happening, people saying different things, children moaning asking why you did not do this our that, feel like screaming sometimes and them you just find the energy to carry on, I now how tired you can get, just want to get into bed and sleep all night.
Grandsons birthday today so we were at our daughters house for dinner, which was a bit of a change. You are not moaning it is part of this PSP . Sending you a big hug take care have a lovely Sunday . Yvonne xxxxxxxx
Jane, Jane, you know you are not a whining, moaning person. Just someone who's husband as an evil disease, which is taking its toll!
Of course it's hard having strangers in your house, those of us, who aren't there yet are dreading it. But what choice do you have? Either you look after Brian, or someone else does. Which one do you want? I am guessing, you want to look after him. Therefore you HAVE to accept the trivial chat of the people coming to help you! Sucks I know! Brian needs this help, so do you!!!
Jane, you and Brian have been through so much together, you will get through this as well. Don't know how, but you will, because you HAVE to!!!
Thank you for the hug. Just having a wobble. I think because we have had a few good weeks almost an improvement (if there can be such a thing) to have the leaning over so he is very hard to stand ĺ doubted my ability to cope and frightened about is this just a blip or is it another deterioration. Then the 2 girls breeze in and my home goes from cozy to crowded oin a split second. I love the girls really but sometimes i feel overwhelmed by them invading my space. Am better today so onwards and upwards. Janexx
Another symptom of PSP....it produces whining, moaning carers. It is very difficult, unsettling, frustrating, annoying etc etc, having to accept that our homes are no longer just our homes. I am one of the few " lucky ones" who has night nurses during the week. Looking back on the years I had nights when I was awoken every hour, I should have no complaints now but I resent someone walking into our house at 9.45 ish so I never see the end of any TV programmes on between 9&10. Friends have said watch them on catchup. When? There are lots of other little niggles but I couldn't do without them now. After Colin had to be picked up by paramedics two weekends running, I've just been given night staff on Sunday nights as well, the first one tomorrow, so I really have no cause to be whining and moaning but as I said, it's a symptom of PSP.
We have a standing hoist which takes all the strain out of lifting. I use it on my own and couldn't do without it. Apart from the OT agreeing to it, you wouldn't need anyone else to use it with you.
NannaB I'm glad to know that we have now found a hidden symptom of psp. our carer's burst in about 8:45 so you lose the end of that program and being as they are with us for between half and 3 quarter of an hour thats the start of the next programme i miss (i know its only a programme but else have we got. We have got all the equipment and I've got the knowledge to use it but am loath to use the hoist permanently at the moment because he is still (normally) able to stand and transfer but after a couple of days of the leaning and stiffness i was having a bit of a freak out thinking i can't cope and manage on my own. Feel more positive today not sure if it was the wine last night or church this morning. Janexx
hi jane I can understand you and what you are going through mate your not a whining person matey its just this psp makes us all a bit unhappy but don't let it worry you there are better days ahead you will see mate ;;;; and all the people in and out when I came out of hospital I had god knows how many people some to shower me some to look after me and many people with paperwork I still don't know what it was all about mate it was just to much there ive had my whinge for today take care and don't worry let every day take care of itself mate peter jones queensland Australia psp sufferer regards to brian tell him to hang in there mate no matter how rough it gets
Hi Jane, get it off your chest as seems there is no other place to air your concerns. I am not in your position yet but seems inevitable that will be one day soon. Dreading it. Hope you come to terms with your visitors and enjoy any downtime you can get. Kate xx
Jane I can totally relate to your post as I am determined not to have carers here. At the moment we are coping quite well with C going to day care two days a week and giving me time to recharge my batteries. Well that is the theory, in fact I run round like an idiot doing all the stuff I never get round to when he's here. We had two falls yesterday both when I had left him to get meals made in kitchen. This morning I woke to find him on his back inside back door and had to leave him there while I washed my face and cleaned my teeth before I had the energy to get him up. I am so thankful he is physically small, though getting heavier from lack of exercise, and seems to be world's best faller in terms of not damaging himself. Just keep plodding on Jane. That's all we can do.
sorry you are,feeling bad about urself - u ra saint really fr, putting up with all the visits etc - io was glad, to get,away fr a whole week of non visits whilst on hols in n yorkshire
Hi Jane the constant stream of carers, district nurses and others bothered me at first, but possibly being a man I don't do small talk too well, but they are my only social contact now, so privacy apart, I find the chat a bit of light relief before getting back to trying to interprete Margaret's grunts and moans. M needs help to transfer chair to wheelchair to toilet to bed etc, but OT & nurses have shown me how to do it without putting my back out so no extra staff. Ask they may be able to help you, but then I'm bigger than M so may be a different situation for you. Best wishes Tim
we have got all the equipment and i am fully trained on it all. I am loath to use the hoist because all the time he can stand (even with help) it is better for him. I think I'm haveing a few off days. And i was resenting my lack of privacy etc. We don't really do social so it has been hard for the last 6 months having carer's in and out. At least if i go back to caring i will be aware of how others in the same situation will be feeling. Janexx
Jane, check into getting a Hoyer Lift to help moving him around. These can be provided by Hospice here in the USA and are invaluable in caring for people with mobility issues or who fall and you have to get them up. No pressure on your back with a Hoyer Lift. Jimbo
Glad I am not the only one who gets fed up with carers coming and going. I start to think about how when I TRY and sit down to watch TV , rarely see all of a programme and its on my mind all night about them coming , o did use to keep the door unlocked but I will suddenly get someone come into the room talking loudly between themselves as it it were in their own house . I have started to lock the door now and they have to ring . I don't like to seem petty but apart from anything else it is rude . Now if I hear them coming I put the programme on hold . I have even had them recently to text me to let me know they are on their way .
it is hard when John has what I call one of his better days , nine of them are good but maybe not quite as bad , if u know what I mean . But after two better days , today he cannot speak at all doesn't know wher he is very confused . MIts so upsetting but maybe he will have a better day tomorrow !!!
I have taken a urine sample this morning. does seem a little better today so far . at least I can understand him AT THE MOMent . It's so unredictable .
hope he isn't seeing lots of imaginary people in the room as well today .
Here darlin' let me whine and moan back. My husband is getting all of the symptoms of PSP. The one I hate the most is that he doesn't respond to my needs. The other day I rescued a dog caught on a chain link fence. I wasn't real smart got too close and it bit and bloodied my face. As I walk in from this frightful event with blood streaming down my face, my husband asks how the dog was. The bite was no longer stinging as I felt the knife of apathy tear through my heart one more time.
I had to remind myself that this was not my husband of even last year. But still, I feel lonely. Can't cry to my kids. Friends can't relate all they say is "I couldn't go through what you're doing." This may be the only place I know of that understands and allows for a little moaning and whining. Remeber for every moan and or whine we got to find a ray of sunshine! ~0~ <that's my ray of sunshine, hahah
Hi, know how you feel! Don't think my husband would even be concerned about the dog, much less me. The only response I get to my welfare, is laughter, if I complain of being in pain, tired or ill! Don't think I am even on the radar, as far as he is concerned, except to fetch this, do that, clean this mess up, etc., etc., etc! He can't even be bothered to ask, will point if he really wants something that minute. Apart from that he just expects!!!
yep. know the feeling. I talk to him about cordial behavior. I know he can do it as he is very cordial to others. So if I hear a please etc. It's been a good day! He's up now so I will leave this til the morrow have a good day, please and thank you! hahaha
HI MY PARTNR THINKD I DONT SAY PLEA`SE A ND THANKYOU BT I DO ALL THE TIME TO HIM - I KWNO WHN I NEED SOMETHING I CaNT Wait F oR IT OR FOR HIM To BE FREE OT HELP mE BuT h at is PSP I m afraid
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