Well George fell over at 4 o'clock in the morning, tried for ages to get him up, in the end I got him up, went back to bed, woke up with a bad pain in my neck, chest and shoulder, I thought I was having a heart attack, managed to get an app at the doctors, she said I had pulled the mussels in my shoulder, gavee strong pain killers, and she told me to take two, plus 2 panadol I thought I will just take the pain killers , oh my god, I felt so bad , felt really sick could not holdy head up.
George had an accident in the loo, I don't know how I gave him a shower and cooked his dinner,
I tried to sleep for a while and George kept calling me I felt like rubbish, just could not do anything, ended up laying on the sofa, George woke me up , went to get him up, and he fell on the floor 2nd night in a row, I phonef our daughter and lucky enough they were still awake, her husband come and got him up, still feeling bad today, rather be in pain than take the tablets. Let's hope tonight there is no accidents.
Had to do so much washing George is having so many accidents,
Dones anyone else's partner keep saying all the time help me help me, when jess right next to me, really getting me down, especially when you don't feel well, sorry to go on but feeling rubbish. Yvonne xxxxx
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I am so sorry to hear of your rough time at the moment. We carers are not allowed to be ill, that's how I feel anyway. Sometimes I feel I don't even have the strength to get out the chair and make a cuppa. I hope you have a much better weekend , both of you .you are doing your best in a terrible situation. I don't have the help me, help me bit but he does a load of deep sighing as if it's the end of the world......but then it is isn't it . Best wishes to you both x
Thank you gypsy woman 1947 when you think about it, it is like the end of the world, for them, just wish I had more patients. Hope you have a good weekend also. Xxxxxx
I don't have a lot of patience either Yvonne, I'm no nurse , but we are doing our best in a very difficult situation . My husband moans constantly , I'd probably do the same if I had his illness, I try to ignore the moaning but when it gets too much I do turn and say it has changed my life completely too , we are both affected by this illness in different ways. I can't possibly understand how he feels, and he has no inkling of how it's changed my life either. Then I say to him , we have to work at this together and make the best of the situation. Hard isn't it , I can't think ahead , it's just too daunting.x
Does your husband tell you why he is moaning. They put my husband on anti-depressants. I wonder if that would help. My spouse does say he has throat pain. He has lost 75 lbs in 18 months. He about starved to death. The moaning would break my heart. I could not handle that.
Oh my, am I ever with you, Yvonne! I'm at work. Just stood up to accept a pile of papers and my back went out on me. Third time only in 7 years, but each time it's when I'm doing nothing at all. I have taken some aspirin, dreading going home in an hour. I don't know how I'll manage him. This hasn't happened since he became so prone to falling. He was terribly tippy this morning and when I went home at noon. We are supposed to go away for a week, and I should be mowing the grass here tonight.
He will be so impatient to be on the road tomorrow morning...I hope I can make the drive.
Shoulders are terribly painful. Have you tried icing yours? That helped me a lot last year when I had to have surgery - both before AND after. Better than the painkillers I was given. Good luck. I hope you can get a rest. Love, ec
Oh dear Easterncedar I hope you have a easy evening, mowing the grass won't do you any good, hope you are ok to do your drive in the morning, and you can manage to get away. Will try the icing. Good luck to you when you get home xxxxx
We all worry about each other, we are all in the same boat, all we can do is take one day at a time, you look after yourself , we are all concerned about each other. Yvonne xxxxx
Oh Yvonne, please don't get him up when he falls. Dial 999. You need help and you will only get it if you have enough evidence to show you need it. Apart from that, if you are hurt or injured you can't care for George as you would like. The first time I called the ambulance the paramedics told me never to get C up alone (once I couldn't get him on the Elk) as they don't want to come out for me as well. They keep a note of call outs and if Socal Services are aware, you are more likely to get help. CHC is not likely to be awarded if it doesn't look as if George needs continuing care and if you keep helping him up who will know what you have to do for him. I got the Elk when they realised how many 999 calls I was making and CHC when I could no longer use it and could show C needed 24 hour care.
I'm so sorry you're having a tough time, it's so hard but we do understand because we are going through it with you. I could never have imagined just how supportive the lovely people on this site are and it does help to get it off your chest and pour everything out, good or bad!
I do hope you feel better soon and George has a better night tonight so you can get some sleep.
Keith keeps asking me if I've any idea how bad this is for him and I feel like saying of course I have, I live with it 24/7, but I don't as I know it would upset him.
He's had a few fairly good days this week and then wham he's been terrible again today, I've spent most of the day shuffling backwards and forwards to the dreaded loo and I'm so tired of it😔
To make matters worse we have had a lot of home appointments this week and will again next week, people coming and going, carers in and out, I feel our home isn't ours any more but run by lots of other people. Don't get me wrong I'm very appreciative of the support they give us but sometimes it all gets to much to cope with, I'm sure you know what I mean!
We also have a two hour journey on Monday to see the neurologist, I can't help but think that it's going to be another waste of time!
We all can't help but get desperate at times, not knowing how bad things are likely to get, I try not to think about it but it's always in the back of my mind, lurking away!
Sending you lots of love and big hugs Yvonne, I truly hope you will feel a little better in the morning....
Thank you NannaB I feel really bad calling out the ambulance, just keep thinking what if there is a emergency and they have come out to pick up George? But next time I will call them, the children are telling me off, and my daughter would not let me do anything today, carrying my shopping for me, taking George to the centre, been a good day, apart from me feeling rubbish.
Pat thank you for your kind words, what would we do without each other? The loo runs are the worst, we went to the doctors, on Thursday, George had a diabetic yearly check, he went to the toilet just before we left home, I asked he again before we went if he needed the loo, he said no, I said to him don't ask to go when we are in the doctors, he said I won't , well as soon as we got in there guess what, he wanted to go to the loo, felt like killing him, took him to the loo, he did not go, when we went in to see the nurse, I was in such a bad mood, what with the pain in my shoulder, and George always wanting to go to the loo, every where we go, I said to her I am not in a very good mood, had a bad day, she was fine, but I felt like screaming. Have a good weekend all of you. Yvonne xxxxxx
George is sitting in the same room as me, he does it and our kitchen you can see through into the sitting room, I think it is all to do with this horrible illness xxxxx
You have every reason to feel that way Yvonne. Does George sleep inn a hospital bed? You don't have to give him a shower if you are in pain. Could have given him a sponge bath or nothing. a little dirt never hurt anyone. Is he wearing depends? If not, please get them and put them on ASAP My heart goes goes out to you. Don is getting worse, doesn't eat much, scaring me horribly. Don says help me when he is is having problems getting dressed which is getting worse. He also won't go to sleep unless I am in the room with him. Keeps on yelling where are you. I feel like I am in a bad dream.
Audrey he had an accident had to shower him, George is also getting worse, no he does not sleep in a hospital bed, George can't dress himself, he can't do anything for himself anymore, he depends on me for everything. George keeps calling me, feel like running away. Love to you Audrey and I hope Don, starts eating a better soon xxx. X
Yvonne, Get a hospital bed ASAP. Got Don's through medicare, didn't a penny. Just found out could of gotten one without cost from the VA. I know how you feel about running away. Feel that way as well. Its not only the eating, he says the some really weird things, over and over again, day after day. Accident with his bowels? Love back and I hope things get straightened out some way or another, xoxoxo
I'm so sorry, Yvonne. I hope you feel better soon. I can not take most of those pain meds. They make me sick literally. It's so hard when you want to help them get up but know you will probably hurt yourself. I really hurt my legs pulling David up the last time he was stuck in the tub. I am still hurting, using mineral ice twice a day. I so feel for you.
Yes when they go over, you just want to help them, I don't think they realise how heavy they are, I am sure George thinks I am super woman, and I can just pick him up, it is like picking up a dead weight, I really think deep down that I can pick him up! Hope you legs get better soon xxx.
Yvonne hope you are feeling better and things are improving somehow for you. Don has had his meds cut in half. Emailed the Dtr who diagnosed he since he has developed compulsive behavior and he told me to cut the dose in half. I tried to reach the Dtr in town 2 times with questions for his issues. Never called me back. We will see what happens.
Didn't speak to the one in town, cut the dosage in half but his compulsive behavior has not stopped. It has only been 2 days since the change in dosage so will see if it changes. Driving me crazy. Hope G is doing better and you as well.
Yvonne, Your not alone. I never know what he is calling me about and developing OCD is not helping the situation at all. He has decided not to listen to anything I say to him. Sometimes I wonder if he even understands.xxoxo
Yvonne,Today rotten day. I am so depressed and upset. Lowering the dosage of the med now seems to setting him back again. Had a lot of difficulty getting him out of bed. On the higher dose he has an easier time but walks around like a zombi. I broke down before and just starting crying. Don't know what to do
Audrey maybe once he get us to lower dosage he will be fine, can you get the doctors to come home to see him? Sending you a big hug look after yourself. This illness is so horrible. Yvonne xxxxx
Yvonne, we will see what happens with the lower dose. He is having more problems getting in and out of bed on it but feels stronger so he says. The Dtr does not come to the house. I am so tired. Yes it is horrible. Audrey xoxox
Audrey give it time takes a while, try and have a rest, nearly the weekend maybe you could get someone around to sit with Don and you could go to bed for a couple of hours. Sending you a big hug, hang in there. Yvonne xxxxx
Yvonne, He seems a little more with it today. He wants to go to the store with me but I m nervous about it. Have no one to come and sit with him. I rest when he does. He shaved yesterday when I was lying down, thought he was to. Will see how the day progresses. Big hug back to you. Audrey xoxoxo
Yvonne, Need some shopping done but I am afraid to leave him alone. Our daughter will prob do it tomorrow for us. I slept well last night so hopefully I will get through the day in one piece. Love and big hug back to you xoxoxo
Audrey in the UK you can order your shopping on line, can you not do that where you are, they even bring it in to the house for you. Glad you had a good night last night, they are bringing George a hospital bed on Tuesday feeling sad about that. Love to you too Yvonne xxxxxx
No, they don't deliver here in the US. Wish they did. Don't feel sad about the hospital bed. Don sleeps in one and I sleep in a twin bed next to him. It is safer for them. Don, can pull himself up holding on to the bars. Its not easy but he can do it. Also when the linens have to be changed you can raise the height of the bed so it makes it easier for you. I ordered it when he had his first round in rehab. Dtr has to ok it which he did.
Oh, Yvonne, so sorry for you. I hope you had a better night.
I agree with nanna B - call 999 when he falls - Then ask for a camel [ I got a bit tearful about managing his falls and they gave me one ] They also have offered a hospital bed but , so far, I have said not yet. Keep a record.
I just wish I could give you some TLC its awful having constant pain and to be so tired as well.
Oh Yvonne, your story is so upsetting, I thought I was bad but you're having a really bad time. I think you need to look after yourself first and foremost, you have to be strong so use a the help you can get. I don't think people with PSP or any other illness realise how demanding they are and they often seem to be selfish in their attitude, or so it seems to me in my situation. Just mind yourself or you will be left with lifetime injuries too.
Thank you all your kind words will call an ambulance next time he falls, if none of the children are around. Xxxxxx
The 'going to the toilet' in this post really resonates. We had it for over a year including one memorable boat trip last October when I took C to the toilet on the boat every 20-30 minutes for the whole day. Not only was the boat bobbing about but there were steps down to a tiny loo. For the past couple of months he has been totally incontinent so we don,t go to the toilet anymore and what a relief that is. Instead we bo to the bedroom to change him while he sprawls on a towel on a bed. When his urinary incontinence first started last year I was dreading the time when he became totally incontinent but in fact it is much simpler than having to make toilet trips. He wears a Turkish brand of Depends and we get through 4-5 per day. It does mean we don't go anywhere much anymore but we hadn,t been going out for more than short trips for a long time anyway. The boat trip last October was the exception. Of course he is in denial about it and sometimes asks other people to take him to the toilet but I just say 'you don't go to the toilet anymore' and he accepts it.
So right! So much dreaded, and so much easier. We use a couple different kinds. One for night that hold three cups of liquid, with a pull on one over the brief so it can't be pulled off, and a less thick and puffy one for day with a super liner. Sometimes a little bit different combination if we are going for a longer period. $$$ but well worth it. Peace at night. Sigh.
Pattz thank you, I bet you feel differently since your daughter has been with, so happy for you having your daughter with you sending you lots of love. Yvonne xxxxxx
Yes it is easier in one way when they are totally incontinent. When we go out i put a night time pad on Brian and normally it lasts untill we get back and then i just give him a good wash and change his pad.
As for falling i used to call 999 every time mainly because he is nearly 6ft and i am nearly 5ft and he was very stiff and unable to even get onto his knees to pull up. I think last fall (floor hug) i used the hoist to get him up off the floor. I used to say to him as much as i love you i am not prepared to do myself any damage getting you up. And if he got destressed about being on the floor i told him well your safe down there because you can't go anywhere.
I do sometimes get calling out wanting me to be near him. But being as he is worried about doing things wrong i play on that and tell him you doing it all wrong by keep calling me so does then stop calling out and i can get on doing what i need to. Hope this can help you. Janexx
I agree with everyone do not try and move him alone call 999 it is an emergency. Also on a mercenary side the more you call the ambulance the more ammunition you have for getting CHC and some care from the professionals who are blocking you at present. Anyway get better soon, I agree taking painkillers is never without side effects but you need them so you relax and the muscles can relax and repair. Best wishes Tim
Thank you not feeling great today, going to let George sleep, am sitting in his chair with my feet up, getting a bit of a rest before I get him up. Will make sure I dial 999 when he falls again. Yvonne xxxxxxx
Hi Yvonne, oh, I really feel for you. Being in pain and coping with George, is not an easy task!!!
First, if your neck and back are not better by Monday, go to an Osteopath! I have to see one every couple of weeks. She keeps me working, just!
Second, report this to the district nurse, or the person who is doing your CHC assessment. You now have evidence, that George's behaviour, is causing you damage and you can say that he is deteriorating again.
Third, have you seen a contenance nurse yet? Ask your doctor to refer you. S wears a convene now during the day and a night pad to bed. Life, although not perfect, is tons better. Of course we still have accidents, the thing leaks, or "dopey drawers" forgets to close the tap! So washing machine still on overtime, but the endless, getting up and down, not getting there in time, as stopped.
Forth, LET your children help! I'm trying hard to let mine in. I know it's so hard, but I realised, that they actually need to get involved. There is nothing they can do to stop this evil disease, we can't cope with watching our loved ones go down hill. But they have to watch that AND have to see and worry about you struggling to look after George. Now you are hurt, (my family's biggest worry) they must be beside themselves!
Before S's convene was fitted, it was the only way I knew he was upset. The accidents increased, I expect that is why George is having so many at the moment, he knows you can't cope and there is nothing he can do about it. Get extra help in NOW, to get you through this patch. Do you have any help coming in? If so, phone the emergency line and request more TODAY!!!! That's what these companies are there for, to help us in times of need. Let's face it, you are in need!
Like everyone else has said, until you are feeling better, if George falls, ring 999! Or your District nurse. They will have an out of hours number and they can decide if they can help or send an ambulance!
Lastly, doctors give tablets for pain relief for a reason, they get rid of pain!!! TAKE THEM!!!!! No ifs or buts, just take them!
Really hope you are feeling better today. You will recover, may not feel like it at the moment.
Sending you lots of love and a huge gentle(!!!) hug
Thank you Heady things have gone fron bad to worst, he has convene's but he won't wear them, I lost it this morning, shouted at him, he said don't shout at me, I said I am at the end of my patients, I was crying, and I told him he would have to wear them tonight, the insides of his legs are really red and sore, I put cream on them, will ring community nurses on Monday, he sugar level is up to 8.5, which is quite high, when you do t feel well everything just feels a millions times worse.
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