I'm ashamed for yelling this morning. Again, Charles tears his depends off (complete with pad inside that is doubled) and urinated all over the bed. I have asked and begged him not to do this. He said he doesn't want to be wet. Well the whole bed was wet. I am on inch away from him and told him I can change him easily without the wetness but he seems to like taking the depends off.
I was a banshee because the inner pad was completely dry!! I begged forgiveness but can't seem to forgive myself. Help
Cuttercat
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Cuttercat
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I lose control from time to time.Feeling remorse is a good sign.Put some Pajama pants on , with the string so you can tie it and or put on backwords and tie it.I double the bow so my dad cant untie it.Forgive yourself, its a normal emotion to get frustrated.God bless.Also , pray and ask God to help you.Reading Bible helps too, a strong relationship with Christ is a really good idea, thats what I do.
Maddening challenge for so many ! Have you looked into the selection of male external catheters ? Checked online and the products are so much better than they used to be. Could this be an option for Charles ?
Don't feel bad as you are a mere mortal and have needs and emotions of your own and it's hardly surprising you snap. Be kind to yourself and know that your reaction is normal.
oh, yes. Most of us have been there. It's awful. I'm so full of regret about the times I lost my temper. When he was wet but the undergarments dry, I would blame it on his "errant peener" - it did seem to want to go its own way, so to speak. That at least gave us a little something to laugh at. I so wish I had been able in those hard times to project my mind into the future where all the laundry and upset in the world would be nothing, if I could just have him back.
Hang on, and don't blame yourself. You are suffering and exhausted, too.
Don't forget EC, so were you, when you lost your temper!
None of us know or appreciate how tiring, looking after our loved ones is, on a day to day basis. Here I am five months on and I still feel totally exhausted. I know grief is just as tiring, but it's that inner core, that I know has still to recover. I now look back, in total amazement, at what I use to do, how I coped, the fight in me. How on earth did I manage??? It's simple, I did what needed to be done and would do it all over again, if I had too. Yes, I lost my temper, (a lot!!!) but in the scheme of things, Steve was totally reliant on me and none of his needs were left wanting. Come on guys, you know your loved ones are getting everything they need. YOU are providing that 100%. So as Julie has said, DITCH THE GUILT!!!
Hey EC, faking is what we are all brilliant at. I was a excellent Carer, looked after my man, to the best of my ability.! Very few people reslised how crap I was, I suspect it was only you guys who knew the truth. And of course poor old Steve.
He wanted and got you!!! End of. So you weren't perfect, none of us are. That didn't make us bad carers, they are the ones that are out the door before you can finish saying Progessive super............
My husband is not at the point where he does those things willfully, yet I still get stressed and angry, only to feel ashamed and sad after. I Try to tell him it is the disease I am angry with, not him. Even my sons can be a bit irritated when they are called again to pick him up. They also love and respect him, but sometimes it gets to be overwhelming. Then they feel bad because no one ever wants him to feel like a burden. It is also hard when he does not say a lot. We wonder what he knows and feels. As he seems to get weaker, I worry about what is next.
You are there for him. That alone is amazing. Focus on the good things you do for him.
I think that when he wakes in early morning Chris automatically takes hold of his penis and pees, thinking he is standing at a urinal. He is still in bed. He can't stand alone. He manages to get to it whatever I do. I wrote some time ago about thinking of putting boxing gloves on him !!!
Firstly bin the guilt, secondly explore the catheter option, OK risks attached but it gives them rest and you sanity, realistically it wil be needed eventually,and men often have underlying bladder problems .
In theory yes, the only one rog had was when a DN changed the catheter and was inexperienced he was poorly then , but in two years that has been the only problem.
My feeling is this is a life limiting illness, why have more things to juggle? I found the unpredictability of toileting the most stressful aspect, also rog now sleeps a large portion of the day so it enables him to rest.
You might have a battle with the medics they will want to try all other things first but realistically you are only putting off the inevitable.
People may disagree but i have a pragmatic attitude to PSP now, you just need to survive the journey.
I totally agree Julie. I fought and fought this battle and felt I had failed when, like you say, the inevitable Catether was put in. Oh to have that time again. I would still have been fighting, but to have one put in. Our lives, at a critical time, would have been so much better. Instead of the hours, changing beds, washing, cleaning the floor, could have been spent, out doing things, whilst we still could, not having to worry about where the nearest toilet was.
Yes, Steve did have infections, he was admitted to hospital, because of them. But his quality of life, the little he had, was improved. He too, was a fiddler. Hence pads or convenes didn't work, but he never touched the Catether, far too frightened.
The bigger issue for me is that Chris moves his bowels 4 or 5 times a day. Often he takes off his pads and its everywhere. Thats when I feel like giving up. Its just happened and its a lot more than changing wet sheets.
He says he doesn't know why. I'm nearby.I don't know how long I can cope with it. Carers are not the answer as it can be any time.
Frustrated. I have lost sight of Chris and just see a demanding " shit machine ".
This sounds dreadful, no wonder you are feeling fed up. Not wishing to sound cruel, but you can not use some heavy duty tape to make it more difficult for him to remove the pads, or at least give you a bit more warning, to reach him in time.
Don't you know what PSP stands for! My definition is P....ss and S...t and P....ss. I totally understand and then they laugh and it makes me want to blow.
Garry was like that at times. Thankfully not every day. I think I would have jumped out of the bedroom window if he had pulled his pads off though!
What he did start to do about 6 weeks before he died was remove his convene! At first I thought it had come off then I reaIised he was taking them off! I told him off but he just looked at me and continued on his merry way. Only it wasn't merry was it?
When you stand back and look at the person it's pretty heartbreaking? He was always so proud of his appearance and would have been mortified had he truly realised what he was doing. They all live in hell and we live there with them at times. You are an amazing woman Jean.
Buy lots and lots of tissues! I used to spend all my time cleaning Garry's nose too. Oddly enough I had forgotten that until I read your post! I remember saying I should buy shares in the tissue company! Yet I had forgotten it. Maybe because of other images I see?
Wish I could give him a big hug and tell him how we miss him, and how much we still love him, even though he is no longer here. Love him while you can Jean.
You really are doing an amazing job. Whoever it was that suggested putting a pair of jogging pants on backwards might have hit on a good idea? There must be something that will mean he can't do it? Have you asked the nurses/doctors?
Sorry I didn't mean to imply you weren't. You have to be a living person to do what you do?
Know what you mean about the bulk buying! My son used to think I was mad when I asked him to get yet more tissues! Not to mention Tena's and the sheets to go under and over him. Maybe that's why he is a bit more understanding than his sister?
Lost a jacket in town today. The second since Garry died!! Have to try to track it down tomorrow. I don't seem to be able to take care of myself anymore!!
My dad can use only his right hand that too, it takes a long so hopefully he wont fiddle. But i want to see how it works and if whether it is available in India.
Dad has been using an external catheter for over a year now, only 1 UTI. He normally just has it at night but since his recent surgery it's been during the day also. It is removed for 2-4 hrs daily, let's the skin dry to help prevent sores or skin break down. I'd say that less then 5 have leaked during the year. Now at the hospital after surgery several leaked since they weren't allowed to wrap the base with medical tape.
Cuttercut have you not got one of the covers you can put under the sheets it's called a Kylie? They are great! I also used the things you put under babies and put one over the top of him too! He was like a turkey ready for the oven! Couldn't cope with the washing though!
I remember one morning he woke me and told me he had wet the bed. He looked so ashamed. Poor man. So get some of these and get a bath sheet for under the baby pad things too. Saves a lot of washing!
We each of us have limits and they vary for different things.
I had a friend who was SAS reserve... A sound and very calm person who on a mountain in a storm would watch mayhem ensue with a team of struggling folk and then quietly come with a solution when every one else had fallen apart and I as his No.2 would be paralysed with indecision and detail.
Then he came sailing with me! I am comfortable at sea (my limits are broad for that) and I would be sipping tea in a blow, freely admitting that I had no clue where we were, but land was far enough away not to be a problem and he would, in his calm way, be falling apart.
That taught me a lot. Here was a man who would be settled under fire, but the sea was beyond his comfortable limits.
We all have limits for different things. We are not flawed because of that.
And, I would add, PSP drives me beyond my emotional limits rather a lot. I too apologise and feel the shame when I get it wrong and rant.
So the trick is knowing where those limits are and having strategies, like time out or time off, to try to stay withing them.
There you go, a bloody long ramble t tell you what you knew anyway... sorry.
I do my best, but I am who I am.
And I ranted rather a lot today and feel like s**t because of it.
Kevin you are right though. Everyone has their limit? We all have strengths and weaknesses? PSP tests people to breaking point. Not just once but over and over again.
You wouldn't be normal to not have times when you rant. I know how bad it makes you feel though because I have been there too. It's really strange that no matter how much you have done or how tired and worn out you end up, it's the sharp words or ranting that make you feel useless? We all know you aren't, and for that matter neither are others who end up nearly cracking up because of this condition.
I am amazed at how resilient people are but when you stop you realise how much it has taken out of you. I am still worn out and can't sleep, and I sometimes wonder if I will ever get back to normal again.
Take care of yourself Kevin. Have you had respite recently?
Dearest Cuttercat, please don't beat yourself up my love. You are doing an amazing job. We all 'lose it' once in a while and that's totally normal. Stay strong dear friend.
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