Well if this is what to come, I don't want to start the new year, George has called me at least 80 times since 9 o'clock this morning, asking to either go to the loo our go to bed, he went back to bed for an hour, we had a bad night, so tired and I won't let him go back to bed, we will have a sleep less night again. I feel like going into the garden and screaming, but what will the neighbours think?
Feeling so bad have a sore throat and legs hurt, just want to go the bed, even if I lay on the sofa he will keep calling me, so what is the point. After my moan I would like to wish all you lovely people a happy new year.
Yvonnexxxx š¬
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Yvonneandgeorge
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Hi sorry you having a bad time if it helps I am bored stiff really J has been watching TV and behaving himself I just get bored because I cant go off and do anything. It is very tedious and never ending!!
Yes all those sales on and we can't go, but look at the money we are saving, I am also bored sitting her, just thinking what I can do, have done my ironing in between taking George to the loo, just want to sleep. Xxxxxx
I must ask, or state or show my true lower class...but who irons anymore? 1 Nobody is going to see what I look like stuck in my house. 2 Nobody is going to care what I look like at the Walmart where every shopper looks like the other shopper. 3 I don't have clothes that need ironing anymore. 4 throw a moist towel in the dryer with the wrinkled item and wallah, 5 minutes or so later no more wrinkles! Forgive my crassness, but I am surprised at how many still iron!!!!
The ironing comment is not the only thing I wanted to say. I did want to tell you that gargling with hot salt water can really help a sore throat! And like Heady said screaming is not a bad idea....not necessarily at your mate but maybe into a pillow....mind the throat though!
I might talk to Bruce about something of import and instead of a good and thoughtful response like in the days of old, it will be something totally in congruent to my feelings.....I sit befuddled and ask myself, Why do I do that to myself , what else was I expecting......" and instant loneliness like a wet blanket falls upon me......
So baby as you have read, you are not alone, no matter how lonely you feel....Remember to Gargle with hot salt water
Will gargle with the salt water, and I always iron quilt covers and pillow cases, I do put stuff in the tumble dryer, and shake it so it does not need ironing. Yvonne xxxxx
Really? pillow cases....I never even knew it was recommended! I bet if you ever have dust, it's not for long....I have dust so old the stuff that made the dust is no longer in existence.....hahaaha if my clothes happen to be noticeably wrinkled I just say it's in keeping with the rest of my body! I don't know, you could throw ME in the dryer for a tumble...couldn't be any less worse than staring at my dust !!!
Oh dear I got a thing about cleaning, can't help it, if we lived near each other would pop over and do your dusting, for a cup of coffee and a chat, sending you a big hug. Yvonne xxxxxx
Oh dear I feel cleaner and happier already...thanks Yvonne!!
By the way, you inspired me to dust, swept up enough dog hair to make my own coat...and that was just from yesterday....And its winter!!!! What will it be like during molting season?
Hallo, Yvonne, very sorry to hear about your sleep deprivation. I know this is so debilitating for PSP sufferer and carer. I hope you can grab a catnap sometime today and also that you both crash out and get a full eight hours tonight.
Hi Yvonne, I know you say you feel like screaming, but have you actually tried it????? It may sound very cruel, but if you have had enough of him calling you, TELL HIM!!!! Not one of us can do this job 24/7 and carrying a virus. We all need sleep, at some time during the 24 hour block. I understand that it can't always be during the hours of darkness, so you need to catch up at some stage, or at least be at rest!
I would NOT be able to do this caring lark, if I didn't express my feelings, in no uncertain terms, at times. I have to scream at S, when he expecting too much from me, not just to try and get through to him, that his demands are excessive, but to keep my pressure valve at a reasonable level!!! Of course it upsets him, but that can't be helped, he needs me to be in a stable state to be able to care for him, so I think it's a small price to pay. Others may say I'm wrong, no doubt the powers at be, would be horrified, but they are not stuck indoors, in this miserable weather, not being able to do anything, all services shut, due to Christmas, bored rigid, lonely and totally fed up with life!
Heady I did get upset with him, told him to look at me, which he did, I said I need to rest our I would not be able to look after him, I needed to recharge my batteries, he said ok, them started calling me again, I felt like I was going mad, I tried to ignore him, but it is impossible, he just keeps calling me, then pulling me, ask me not to abandon him, just feel drained.
I am also feeling so bored, not even able to do much, and George never wants to do anything, his eyes are closed so much of the time, feel so for him, but also feel sorry for myself, not sure if people will think I am being selfish, but sorry that is the way I feel, so tired!!!!!!!!!!!!!!
No Yvonne, you are not selfish, you are human, and like probably all of us, tired, sad, fed up and wondering how long this nightmare will last but all the time knowing how it will end and not wanting it to end in the inevitable way.
Hang on in there; snatch a cat nap whenever you can. I sat down today exhausted and suddenly woke with a start thinking I'd been asleep for ages. I'd sat down 10 minutes before but felt as if I'd had a good night's sleep. I think my body is so used to napping I can just switch off.
I hope your sore throat soon goes and your aches and pains.
Sending you a big hug.
X
PS one advantage of virtual hugs...I won't catch your sore throat.
PPS don't scream too loud, your throat will hurt even more.
Hi Yvonne, I hope you both had a better night. Colin isn't good. He has been in bed since Christmas. The DN said keep him in bed for a few days to take pressure off his sore. When I tried to get him out of bed after 3 days, he had totally lost the use of his legs so couldn't use the standing hoist. The other hoist hasn't come yet so there is no way of getting him out. He has had a couple of totally non responsive days where from first thing in the morning until 8/9 at night it's as if he is unconscious then is eyes suddenly open and he is back with us. I'll chase up the hoist tomorrow, as will the OT and DN. It's been a very long Christmas break.
Yvonne, I feel so bad for you. I usually say to Don OK and then he keeps quiet for a while at least. Try to stay strong and take care of yourself. A good scream or cry will make you feel better. Gotta get it out. HAPPY NEW YEAR AS WELL.
Thank you Audrey, does not work like that with George, he just goes on and on, he said sit down, when I did he kept calling me. Oh well tommorow is another day. Happy new year to you xxxxxx
Yvonne, sounds as though you have a bad night and day, try not to beat yourself up try and relax (yes I know, I can't but I try).
This is a part of PSP care I do not like or understand how to cope with, sleep deprivation, constant alertness, choking, drooling, multiple toilet trips at all times with dry runs and tidying up after incontenance. oh how I wish I could give up but I am in for the long haul as we all are.
Best wishes for a quiet night and not too many toilet trips.
thank you Tim, it just seems every time he sees me he keeps calling me, pulling me, and asking me not to abandon him, just feel I can't cope, I am being silly, but just feel so tired happy new year too you both xxxx
Of course not silly. The exhaustion is the killer. I finally pushed him into getting a catheter two weeks ago so perhaps we could sleep, and he's had pneumonia ever since, coughing and choking at 90 decibels, poor man,, so only one half a night's sleep so far, but that half felt glorious. I was breaking down, horribly, and had no reserves of patience or generosity. Thing are much better today. Just a little sleep changed everything. I wish I could send you some. Hang on Yvonne, be well. Love ec
Thank you Easterncedar hope things are better for you today, still feeling rough, but will get there soon, had quite a good night last night. Sending you a hug and happy new year.
I stayed for the long haul as well and have no regrets now except the fact he had the horrible desease and therefore is no longer here. I would do it all again, but wouldn't wish him back in that condition. Hang in and enjoy each good moment to the fullest. Another year now and starting a new life alone.
I am so sorry folliott , just feeling sorry for myself, hope you are ok, it is such a horrible illness, you need some much patience. Hope you are doing ok? Yvonne xxxxx
Hugs to you Yvonne, this wretched illness robs patient and carer . It's so awful for the sufferer but I feel I've lost my life . Can't go out, can't sleep at night , endless trips to loo, mopping up , oh if only someone would make ME a cuppa and I could put my feet up. I'm not constantly called , it must be so wearying. I truly hope this phase passes quickly for you. Isn't this site a Godsend, it's got to be the next best thing to going in the garden and screaming xx
Yes gypsywoman this site is a godsend, where would we be if we did not have this extended family, doctors are useless, I think we now more than them about PSP, sorry have to go George is calling me, I might have to change my name. Happy new year
hang in there Yvonne good people are hard to find matey and the sooner George gets that into hes head th\e bett\er it will be for you I did write a longer \mail to but I lost it a\gain someswhere cheer\up matey take care peter jones queensland\australia psp sufferer but a pussy cat I think unless I don't know I'm doing it
jOjm gets days the same as that NannaB. . It's almost like a coma , sort of frozen /locked in .
You worry then that they are not being fed and watered don't you .
It's johns birthday today, he is 82 , when I came down the carers were already waking him up , they brought him birthday cards . They saw to him and I asked them to leave him in bed . He has been in bed all over Xmas .
Spends most of his time there now , he is more comfortable and I can reach him easier as well .. I am not bending over as much his chair is so low .
I got up at seven , gave him a drink and his tablets , got on with breakfast , opened my mail and came on here . Fell asleep at the table . Really have to push myself to get going . All I want to do is go back to bed but I know if I do he will call me . Or press his remote door bell.
Ther is another cold cup of tea at my side , I am desperate to have one and when I have had a few sips I get sidetrack I throw away more then I drink .
Roll on the Spring . I will make an all out effort this year to try and get outside more. We must all b v short of vitamin D . If it's only for five minutes at a time ..
Will you all make sure I do so , do check up and nag me please ..
Oh dear Yvonne, what can I say! Sleep deprivation must be the worst thing when you are caring for someone who is making such demands on you. I am sure he would be horrified if he understood the implications. This awful weather doesn't help does it, rain rain and more rain, when will it ever stop,but it is a reason to not go out to the garden to scream because you will catch another chill. I do hope Hingis improve for you and that so how you get that much needed sleep to recharge your batteries. All good wishes for you and George. Love Kate xxx
Agree. It does make a difference to know others have the same feelings we struggle with. I'm with Heady in this. I'm not proud of it but I do shout and have felt like hitting him when he seems so careless. This site helps by knowing that this is the disease. Its not him being awkward.
I am now more "alert" than I have ever been in my life, listening for a shuffle that means he is doing something we have just agreed isn't a good idea!
Thank you for your kind words, he has been asking to go to bed, he is still calling me all the time, he has gone asleep on his chair, so a bit of peace and quiet, hopefully he will sleep tonight xxxxx
Hello Yvonne. So sorry to hear that you are not well. Hope your sore throats is getting better. I found smashing an empty glas jar (well wrapped into plastic bags) smashed against an outside wall relieved tension and stress beautifully. The loud bang seemed to do the trick. Sounds crazy but it worked. I found hubby was scared of being abandoned, although I kept reassuring him that I would never do so. It's either PSP or the complete dependence on the career that causes this feeling. This is probably why he keeps calling you, just to know you are there. Hopefully you both get a good sleep tonight. Take care, lots of hugs, Maddy xx
Hi Yvonne, just reading your post now. Feeling really sorry for you and hoping your sore throat is better and you have managed to get some of that much needed sleep. You have to let George know your feelings and maybe it will improve things if only for a short time but keep doing it. I know W finds it hard to remember things and he is only at the beginning of this awful illness but I keep reminding him, (feel like I'm nagging all the time. ). Is there anyone (family or kind neighbour) who could sit with George just so you could get an hour to yourself? Sending you a BIG hug and lots of love. xxx
Hi - my dad went through this and it lasted for a year I think - I wasn't here and my mom would call and complain - patients have a fear of abandonment which gets very bad - and they fear their SO may run away with someone else (!) - plus dementia patients sometimes develop a sadistic pleasure in hurting others so that makes it even tougher....
I would suggest you get some help of some kind so you can be away for even a few hrs very day or you will have a nervous breakdown God forbid - after a year my dad pretty much quietened down... He has a hard time talking and sleeps most of the time in his good days - it's a relief he is not so agitated anymore but it's sad I won't hear him again talking normally either, even if it's hurtful stuff...
So sorry to hear that you are having such a rough time at the moment. Feeling poorly yourself AND caring 24/7 is an impossible situation for anyone. It sounds as though you urgently need respite, could your Community Matron find some emergency respite for you ?
As you know, I finally caved in and P is now in a nursing home. Honestly, after 2 months I now feel better and I see him every day so I can monitor his care and still be there for him. I can be his wife again and not the screaming harpie I became.
Christmas has been difficult but all the family have visited regularly and there are carers around all the time so he is no longer calling out constantly. He knows where he is but thinks he has only been there "3 days" ! He is far more compliant with the staff than he ever was with me !
You also have a life Yvonne and there are times you have to sit back and look at all the options for you both. Get some help !!
NanBabs glad that P is getting on ok in the nursing home, and it is near enough for you to visit, Christmas is a difficult time for everyone, brings back many memories.
My lovely brother has offered to come down and look after George for a week in March, my sister in law and myself going away for a week again, all booked, something to look forward too, and George is back in the centre, first day back today, he came home with a smile on his face. Xxxxxxx. You look after yourself.
I am glad you have something to look forward to Yvonne, but also look for all the help you can get every day. This is an ongoing situation you are both experiencing that, sadly, will only deteriorate, so get as much help now that you can to help prepare yourself for what comes next (whatever that may be !)
Don`t wait for the next crisis, try to put the extra help in place when things are comparatively calm. Good to hear that George came home with a smile on his face.
Follow your own good advice - look after yourself too !!
Thank you NanBabs will do, makes you wonder how we all cope doesn't it, when the end comes for our love ones we will be worn out, sad that they have gone, but what a horrible illness. George needed to go to the doctors today, I phoned our daughter and asked her to take him, she did, left me time for myself, just an hour but an hour is an hour. Sending you a big hug. Yvonne xxxxxx
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I know Iām not alone in this.
Severe leaning - new way to get patient into bed.
Year on
