Last night was the worse night since George has been ill, he started from 2.45 in the morning, I did not get in bed until 1 o'clock , he was calling out help me help me, kicking the quilt off, trying to get out of bed, every time I settled him and got back in bed, he would start again, managed to get him back to bed by 5.30, I was totally exhausted, by then I was wide awake.
At 8.30 I could hear the door banging on the tiles in our wet room, he had managed to get out of bed, holding on to the cupboard, he had opened to tube of the catheter bed was wet through, his pyjamas were so wet, and the floor in the wet room was wet, he said he was trying to help me, well showered him and changed the bed, lucky we have a hospital bed, all he keeps saying is help me help me. Our daughter came she sat down with him, and was so calm, I felt by them to pull my hair out, he said to her the catheter is uncomfortable , it is because he keeps pulling it, oh for a easy life.
He also had a fall and I have an elk which was so easy to get him up, granddaughter, wanted a go after. To top it all I trying to organise dinner for Sunday 5 of George's family coming for dinner. Oh well have to get on with it and hope for a better night. Seems like I am always moaning, sorry. Yvonne xxxxxxxx
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Yvonneandgeorge
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That sounds horrible and you deserve to moan. So far I've only had days similar to that. I'm sure the nights are coming soon.(: Last week I had to call a neighbor to help me get D out of the tub. He had slipped down because he forgot to NOT turn the water off. More and more I am realizing how much these poor patients just cannot remember the things we all take for granted. Which means I need to remember THAT instead of thinking he is able to remember things. He almost fell this morning because he forgot to use his walker. He doesn't know how, most of the time, to get turned over onto his side in bed. And the list goes on and on as we all know.
He also peed on the front porch again, the wooden front porch.
I'm sorry baby....but I had to laugh at your husband peeing on the porch....oh I guess its just my trailer trash humor....But I can see lil old conservaative lady driving by in her oh so clean car from her oh so dustless house bumpin right into the your front yard fence while she gasps at such a sight!!!! G
"good morning , Mrs. Pristine!" as your husband waves his appendage!
Sorry about your wood porch...time to stain it eh?
Oh please have a good laugh! My son and I and others had to laugh too. Heck if you don't laugh at some of this stuff you will go crazy!
I went out with my bucket of soap water and washed it off. At least I already told our neighbor lady it could happen. As far an appendage goes...well it doesn't go far these days. Which is why all the pee was on the porch!
A big hug Yvonne and i hope you have a better night tonight. How is it when they try to help it is a total disaster. But i will say one thing that i have found with my Brian he does pick up on the emotions of those around him. If I'm stressed and tired he is fractuse and needs/wants more attention. He is even more troublesome when he is under the weather.
I only had to have a catheter in for a few days and i think i spent more time adjusting it because every time i moved it seemed as if it caught on some piece of clothing or the weight made it feel as if it was stretching out was so pleased when they took it out. They are not very pleasant things at all.
Hope you manage to get some help to keep George occupied while you get dinner ready tomorrow.
Lots of hugs and sending you some tranquillity Janexx
It's so hard isn't it Yvonne, I do hope you get some good sleep tonight, I am so ragged if I am woken. I don't think we are quite at your stage yet , the falls are on average twice a day and once in the night, I just can't get him up , last week I hurt my back in doing so. The OT is coming Monday she says I need what the ambulance staff use, I don't know what that is but hope it's good. We have moved to this bungalow for downstairs facilities and to make things easier but it's so hard at the moment . The move nearly killed me and now the sorting out is doing the same!!! I'm surrounded by boxes. I've lost the will to sort it out at moment.
Have a lovely meal with family , hope it all goes well. Isn't this site a blessing for a moan and groan and off load.
M gave me the run about last night from 2 til 8 half hourly trips to loo for zero or high pitched moans. I felt really down but got on with things as usual for Saturday: chemist for prescriptions, shopping, washing, ironing, preparing for M birthday lunch tomorrow luckily easy spag Bol not Sunday roast and for little grandson jelly and cream may even get M to have some. But so exhausted we both missed the Wales Australia match slept on couch M in her chair. I now have stiff neck and hips. Got her to bed a hour ago and amazing no moan soft snores. Hope we have a quiet night, but not holding breath I think I may resort to lorazepam if she starts again tonight/tomorrow morning. As I have to be operational for family tomorrow though must admit if I do not get a good sleep I will be antisocial which I do not want to be.
Anyway time for a glass of wine then bed. Hope everyone has a good night sleep best wishes Tim
Thank you all he wanted to go to bed and he has spent the last two hours calling me, I have put the sides up on the hospital bed, I am so tired I just need to sleep, I don't think he is in pain with the catheter, I think he just wants it out, and this is he's way of doing it. Good night everyone hopefully we will get some sleep xxxxxxxx
Have you tried convenes? I gave them up once then tried again using proper soap for washing and kitchen towels for drying before spraying with an adhesive. Much better result! We use them all the time. Has revolutionised our lives. We can now go anywhere with the convene and wheelchair. You need some sleep . Could your family give you a couple of hours care? Moving house is exhausting when all is well. Try to get some support. Royal Voluntary Service will sit for you to have a break, ( or just crawl under the duvet). Sending hugs. X
Dinner is all prepared just have to put it in the oven, and desserts are done, our son is coming in the morning so he will help. Managed to do most of it while George was watching TV this evening xxxxxx good night all Tim I hope you get some sleep as well. Yvonne xxxxxx
You had a very bad time and you have every right to moan and bitch. Do you think he might be coming down with something? Neuro told me that any kind of trauma or illness effects PSP very badly, or any kind of Parkinsons. D is having a bad time because he had a tooth pulled. She raised his med 1 half of a pill so now I have to give him the pills 5 times a day instead of 4. Make sure he is drinking lots of water. I so feel for you. Hope he has a better night tonight BTW, what is an elk?
Jean lost the post I had just done, another bad night not much sleep, will sort out some sleeping tablets with the doctor, we all need our sleep, to be able to carry on. It is George's cousin and children coming down 5 of them, dinner going in soon, desserts made, hopefully I won't fall asleep over dinner. Sending you all a big hug Yvonne xx.
Big hugs back to you Yvonne. Tiredness is a killer isn`t it ? Don`t try to do too much, I used to cook for the family and friends but now I have had to cut back on that because I just can`t do it so much. Sometimes have a take-away instead !
Don't be sorry - it's a nightmare . The small hours of the morning are the worst aren't they - you just feel so alone and desperate for some help and some sleep . We are all there with you in spirit if not in body .
George and everyone thank you for your posts, George is is lonely at night, and just want to sleep, in the end sleep has passed you by. Another bad night last night, only a few hours sleep, and people for dinner. Xxxxxxxx
For meals, could you suggest doing the main course and friends family bringing the starter and pudding?
I now have friends round but just provide wine, beer and nibbles , ( crisps, nuts, etc.) They seem to enjoy it as we do and often bring drinks along. Not a lot of effort but an enjoyable evening for us. ( Don't even have to drive home!) Sending hugs. X
Hi Yvonne, sorry I missed your post yesterday. Please, please, don't feel you can't say exactly what you are feeling. That's what WE are all here for. To help each other through this #### we find ourselves in!!!
I can only second what George has said. In those lonely, hateful hours, remember, someone else is up doing exactly the same as you. I am positive you would be saying to us, "thinking about you, sending lots of love, etc.,". Well we are there with you as well! Go back to your doctor tomorrow. Talk about this problem with the catheter. Can George just have pads? S is in them permanently now. Although, this morning, I have made him try to use his convene again! At least with pads, it's only seepage that you have to deal with, not a full blown bag!!!
Hope you have a lovely time with the family. Just try and relax and enjoy the grown company. Make sure your diary is as quiet as possible next week, so you can catch up on your sleep. If George is asleep, so should you be, no matter what the time of day!!!! Better still, contact your a District Nurse and try and get extra care in, so you can go to bed for a few hours, or get a night sitter in! All things that will help get you CHC,!!! I will do that email, ASAP!
Hi yvonne definately get some sleeping pills for your husband cause you really need your sleep , doctor perscibed them for my mum as mum had us awake most of the night shouting helpme pulling on her underwear till they were almost ripped to shredds , once mum had sleeping pills she would sleep for hours this disease is hard enough to cope with when u manage to sleep without sleep its a living bloody hell. Sending hugs to everyone xx
Thank you all had a lovely day with the family, dinner turned out lovely, desserts were great, they have left everything tidy just sat down, here's to a good night😵
Quite right to moan. What a dreadful time you have had. I think you need to call your GP and ask for them to ring you to have a chat. You are a star to be doing what you are doing. Well done you. I hope George's family realise what a treasure George has in you. Sending Hugs. X
Well last night was something else, George was calling out help me help me, banging on the side of the hospital bed, I put the sides up on the bed, he was just rolling around the bed, every time I asked him what the matter was, he did not answer, he was just saying help me.
I thought I would video it, which I did to show the children, and then when I went back into the bedroom, could not believe my eyes he had managed to stand up on the hospital bed, holding on the wall, I don't now how he did not come over the top, what a nasty accident, he would of had, I felt sick.
The tossing and turning went on until 1 o'clock, then he started again a 5.30, I went in and he had opened the catheter, so wet bed, wet pyjamas, so cleaned him up, changed bed, at 6.45, guess what he was fast asleep.
When our Son came around today he had a chat with George, telling him that his behaviour, was not good, and that the catheter, was uncomfortable, because he kept pulling it, so hopefully he listened to Peter.
Family all came for dinner we had a lovely day, but George did not want to sit at the dinner table, he wanted his dinner on his little table, which he dies all the time, does not interact, at all, which he has done for a long time.
We all sat down with him after dinner, and had a chat which he joined in with, now and again, just gave him time to think about things.
Have you contacted your Dtr about what is going on? Possible infection of some kind could be setting him off. You have to rest or you will get sick. I get up in the morning give Don his meds, take mine and I forgot one dog gets his and we all go back to sleep. Don is having a great deal of trouble getting dressed and my back is killing me. Glad you had a good dinner though. Something good for a change.
No, Yvonne, you are not moaning and nor is this George's fault. Far be it from me to be prescriptive but it sounds to me that you both need George in a hospice for a few days of palliative care. I have been through this. It is not George's fault at all. You need a break too. The hospice will understand. Do I recollect that you live in Hertfordshire? There are several outstanding hospices in the county. We live in a modern and generally compassionate country; nobody deserves what you are going through
Tim, I am going away with my sister in law for a week, my brother is coming to look after George, and our children are near by, so he will get the care he deserves. I do understand that this is not George's fault at all, it is this horrible illness.
Yes there are some good hospices in our area, and we do have contact with them, and they do visit us.
I think last week was a really bad week, for us, but with this illness you don't know what to expect next. Yvonne x
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