It's life Jim - but not as we know it!

[jenniferjean]

I had the wet bed problem with my dad @jenniferjean . At one point I was putting a disposable pad over a washable kylie over a waterproof mattress cover and still having to strip the bed everyday and dad was in pull-ups!

Do you have any help with your OH? It sounds as though you need some.

My husband is in pull-ups and I had a Kylie over the waterproof mattress cover, all had to be washed this morning. It's obviously not enough. I've left a message for the continence nurse, asking what more can I do.
No I don't have any help, only a take-a-break once a week allowing me to go out for 3 hours. Ha! where can I go during lock-down.
The funny thing is this post was interrupted by a call from our surgery. Last week I had called asking for a advice from the doctor regarding the problem my husband was having going to the toilet and passing his stools. I mentioned this in an earlier post. It was a nurse who called back and I got a bit stressed over the phone. The result being this call I've just received just now. It was from someone from a new department they have set up. I think she called it the frailty team. She asked loads of questions and said she would see what help I could get. I'm not holding my breath.

 

[Bunpoots]

I really think you need some extra help now. When my dad got to that stage we were awarded a carer in the mornings and she was wonderful. She managed to get dad up, washed, breakfasted, the bed stripped and remade and all the dirty laundry washed and on the line in the space of 45 minutes!! It used to take me 2hrs to achieve the same.

I’ll keep my fingers crossed for you..

 

[jenniferjean]

I've decided to update my own thread, my "Jim" thread, and bring it back into circulation. That way I can look back on it from time to time and notice time scales and how things have changed.
One thing I wanted to record is his eating habits, the way he spits things out and then puts them back in his mouth. This is one of the reasons why I turned down my daughter's invitation to Christmas dinner. I didn't think my twin 6 year old grandsons would benefit from the exhibition.
If he gets something he particularly likes he will pack his mouth until his cheeks are bulging, and then starts to choke - and still tries to get more in.
For some time he has been eating his meals in a particular way, vegetables first then potatoes and then the meat. But now he has extended that even further. For example, if he is given beans on toast he will eat every single bean first before eating any toast.

 

[lollyc]

I've decided to update my own thread, my "Jim" thread, and bring it back into circulation. That way I can look back on it from time to time and notice time scales and how things have changed.
One thing I wanted to record is his eating habits, the way he spits things out and then puts them back in his mouth. This is one of the reasons why I turned down my daughter's invitation to Christmas dinner. I didn't think my twin 6 year old grandsons would benefit from the exhibition.
If he gets something he particularly likes he will pack his mouth until his cheeks are bulging, and then starts to choke - and still tries to get more in.
For some time he has been eating his meals in a particular way, vegetables first then potatoes and then the meat. But now he has extended that even further. For example, if he is given beans on toast he will eat every single bean first before eating any toast.

Oh yes! Mum eats as if the plate is going to be snatched away at any moment - cram it all in a fast as you can. She would've given us a real telling off for eating like that. If I cut a slice of toast in half, she will take a piece in each hand and take a bite from each. And then the choking, so it gets spat all over the place. Joy.

 

[Justmary]

My husband behaves that way too. I give him everything in small portions so that he can at least take a breath in between. At the beginning of the year it was the opposite. He was eating very little very slowly. Never a dull moment huh?

 

[Woo2]

Mum eats so incredibly slow , everyone else has long finished and gone off , she too though eats what’s nearest her first , one section at a time , veg potatoes then meat . Tried changing plate colour to no avail .

 

[jenniferjean]

There's always something to kick you back isn't there? Just when I thought "It's ok, I can deal with this". There's always something.
Yesterday I was telling myself that things weren't too bad and I just need to adjust. Then last night, or should I say the early hours of this morning, I'm once again pulling my hair out.
I was awoken at 1 a.m. by my husband moving about in bed, just a restless fidgeting. I asked him if he needed the toilet and he said yes. So I quickly got out of bed and went to aid him with the bottle, only to find that he was already wet. I got him to the bathroom and while he was sat on the toilet I changed the sheet and the Kylie sheet. I changed his pyjamas and pull-ups and got him back into bed.
I was once again awoken at about 5 with the same movement. Once again I found he was already wet and the bed, and him, was changed again.
I didn't go back to bed after that. The washing machine is on and I have two pairs of pyjamas, two sheets, and two Kylie sheets to wash. The last of the three Kylie sheets that we own is now on the bed. What do I do if he wets the bed again tonight? And why has he suddenly stopped asking for the toilet. He was, previous to this morning, waking me by trying to get out of bed to go to the toilet. Why just this fidgeting movement when it's all too late?
Where is he now? He's sitting in the lounge in his pyjamas putting his shoes on and then taking everything out of the drawer in the coffee table. In a few minutes he will put it all back and then change into his slippers. Then in a while he will do the same things again. And all the time I'm sitting here wondering what I'm going to do if he wets the bed again tonight. I can't get the Kylie sheets dry in that time.
I'm beginning to think that I can't do this. My biggest problem is that I am a very logical person. Where is the logic in Dementia?

 

[Bunpoots]

Have you got the highest absorbency pull-ups @jenniferjean ?

My dad got to the stage where nothing would keep him dry all night but really absorbent pull-ups would have worked if he’d remembered to put another pair on after he’d wet the first ones but he lived alone so he no-one to supervise him.

I used disposable bed pads over the kylie (stuck down with double sided tape so they didn’t move) which worked as dad would get up and move the wet pad leaving the kylie still on the bed and meant a little less washing. Puppy pads also work reasonably well.

I bought most of dad’s stuff from Incontinence Choice. It arrived in a box which just said “Choice” on it so no hint as to what it contained.

 

[jenniferjean]

Have you got the highest absorbency pull-ups @jenniferjean ?

Would you believe the pull-ups are actually dry on the inside when I take them off him after his "accidents". The reason is he insists on sleeping with his hand inside 'holding on' if you see what I mean. Consequently he is actually bypassing the pull-ups. I'll definitely look at getting some disposable bed pads though.

 

[Bunpoots]

Would a onesie dissuade him from holding on? If he’s not realising he needs a wee until it’s too late it might help keep things inside the pull-ups. I believe you can get them which fasten up the back too

 

[maryjoan]

There's always something to kick you back isn't there? Just when I thought "It's ok, I can deal with this". There's always something.
Yesterday I was telling myself that things weren't too bad and I just need to adjust. Then last night, or should I say the early hours of this morning, I'm once again pulling my hair out.
I was awoken at 1 a.m. by my husband moving about in bed, just a restless fidgeting. I asked him if he needed the toilet and he said yes. So I quickly got out of bed and went to aid him with the bottle, only to find that he was already wet. I got him to the bathroom and while he was sat on the toilet I changed the sheet and the Kylie sheet. I changed his pyjamas and pull-ups and got him back into bed.
I was once again awoken at about 5 with the same movement. Once again I found he was already wet and the bed, and him, was changed again.
I didn't go back to bed after that. The washing machine is on and I have two pairs of pyjamas, two sheets, and two Kylie sheets to wash. The last of the three Kylie sheets that we own is now on the bed. What do I do if he wets the bed again tonight? And why has he suddenly stopped asking for the toilet. He was, previous to this morning, waking me by trying to get out of bed to go to the toilet. Why just this fidgeting movement when it's all too late?
Where is he now? He's sitting in the lounge in his pyjamas putting his shoes on and then taking everything out of the drawer in the coffee table. In a few minutes he will put it all back and then change into his slippers. Then in a while he will do the same things again. And all the time I'm sitting here wondering what I'm going to do if he wets the bed again tonight. I can't get the Kylie sheets dry in that time.
I'm beginning to think that I can't do this. My biggest problem is that I am a very logical person. Where is the logic in Dementia?

First thing I would do is sleep in another room - in fact I do. I can't bear to share a bed with my OH much as he is loved. He soils the bed with the output from his stoma..... You can always get a baby monitor so you can see/hear him if you feel the need.

I, too, am a logical person, and there is no logic in this disease. You have to make life as simple as you can for yourself, as it is hard to be caring and useful to the PWD if you are exhausted yourself. How are you drying the Kylie sheets and all your laundry? We do not have a tumble dryer, but I use the radiators in the winter months.
Have you had a carers assessment? Devon Carers have assessed me several times and provided things I could not run to financially and I know would provide me with funds for a tumble dryer if I asked.......

 

[jenniferjean]

Would a onesie dissuade him from holding on? If he’s not realising he needs a wee until it’s too late it might help keep things inside the pull-ups. I believe you can get them which fasten up the back too

I'm not sure if I could cope with putting one of those on him, I struggle to dress him as it is. And could I get it off him in a hurry if I had to?
As to dissuading him from holding on, my first thought was "have you ever tried taking a dummy from a baby?"

 

[jenniferjean]

First thing I would do is sleep in another room - in fact I do.

We only have a small flat. It's classed as two bedroom but one room is very small and would only take a small single bed and nothing else. Besides I need that space which I use as an office/craft area. I'd be lost without it, it's my lifeline. I did try sleeping in the lounge but I couldn't settle and he kept coming in looking for me. He wouldn't sleep on his own.

 

[jenniferjean]

How are you drying the Kylie sheets and all your laundry? We do not have a tumble dryer, but I use the radiators in the winter months.
Have you had a carers assessment? Devon Carers have assessed me several times and provided things I could not run to financially and I know would provide me with funds for a tumble dryer if I asked.......

I don't have room in the flat for a tumble dryer and we don't have radiators, we have underfloor heating. However, the Kylie sheet I washed first thing this morning was dry by 4 p.m. So I was panicking unnecessarily, something I tend to do nowadays. I see the worse all the time.

 

[maryjoan]

We only have a small flat. It's classed as two bedroom but one room is very small and would only take a small single bed and nothing else. Besides I need that space which I use as an office/craft area. I'd be lost without it, it's my lifeline. I did try sleeping in the lounge but I couldn't settle and he kept coming in looking for me. He wouldn't sleep on his own.

It's awful isn't it? We rent a small bungalow, and I have tried all sorts to make life acceptable but it doesn't happen. Good Luck to you - we all need a healthy dose of good luck I think...

 

[Shedrech]

I'm not sure if I could cope with putting one of those on him, I struggle to dress him as it is. And could I get it off him in a hurry if I had to?
As to dissuading him from holding on, my first thought was "have you ever tried taking a dummy from a baby?"

the pull ups dad had were easily torn down the side seam to take off, so actually easier than pants or pads ie put on like pants but don't have to pull down and off over feet ... the seam was strong enough not to tear whilst in use

 

[jenniferjean]

I often ask myself, does he know what he is actually saying. The other day I commented on someone's post about how my husband reminds me of one of those 'action men' dolls. You pull the cord and it says one of about half a dozen sayings. One of the things he says often is "Are we going anywhere today?" or "we're not going out today are we?".
This morning I had to take him for an appointment at the hospital. While we were sitting in the waiting room, with lots of activity going on around us, he says "we're not going out today are we?".

 

[jenniferjean]

Well here we are again, another wet bed to change. This morning it was at 5.30, so I felt no point in going back to sleep after changing the sheet and Kylie sheet. He's gone back to sleep.
I suppose the reason I'm posting is the hope that someone can say that they've been through this and the answer is ?????.
Even the continence nurse had no answer. What do you do with someone who is sleeping with one hand inside the incontinence pants so that their urine is bypassing the pants and wetting their pjs and the bed. The pants are dry.
How can I stop this? I'm so tired.

 

[Woo2]

I don’t want to sound trite , I don’t have any answers , just wondering if you can give him something else to hold , a teddy , your hand ? Have you considered the sleep suits that do up at the back ? I’m sorry you are going through this .

 

[lollyc]

I confess this isn't something I have to deal with, but I think the sleepsuit might be the answer, I assume they are fairy easy to get on/off as they are designed for disabled people. Perhaps speak to a supplier and see how practical it might be?