Struggling Now

[esmeralda]

Well, just had the usual major pre bed clean up.
The problem is, my OH's mobility is now so poor and he has so little control that by the time he gets up to transfer from chair to commode it's too late. We have a 'Turner' and he can pull himself upright pretty well but to go from upright to sitting is a major difficulty, he just hasn't got the confidence to lower himself down. The whole process can take 10 to 15 minutes with him nearly getting there and then pulling himself up again and having to start over. Then often he's awake at 0600 obsessively using his bottle, and trying to get out of bed although he has almost no control over unrinating and doesn't know why he's trying to get up.
I'm getting exhausted and would welcome any suggestions. Don't see how having carers in would help as they wouldn't be here this time of night. He sleeps a lot during the day and only seems to wake up towards evening so we tend to be quite late to bed then the clean up and actually getting him into bed takes a minimum of an hour, tonight at least an hour and a half.

 

[Izzy]

Hi Es. I'm sorry you're having such a hard time. I was wondering what continence product you use for your husband. I was just thinking if he had the highest absorbency tena flex product it might give some leeway time wise. These are what Bill wears overnight. They're not perfect by any means but they're the best I can find.

http://www.tena.co.uk/looking-after...formation/our-products/belted/tena-flex-maxi/

Sorry if that's not helpful!


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[Grey Lad]

Hi es I have nothing I can suggest as this is completely outside my experience. I hope you have managed to get some rest and today is kind to you. G L

 

[bemused1]

Es I so remember this stage. You have to move on and change otherwise you will crack. Is he resistant to using incontinence pads?. If so start him on pull up pants. It took a long time to get hubs to accept them.
Two things, you need to talk to continence nurse access them via your gp. Also talk to occupational therapist. You cannot continue like this, one of you will get hurt. It sounds to me like you need a hoist, not just a turner.
Es I am sorry to say this but you need to start thinking about these things.It will not go away.I know you said Nick is easy going but dealing with these most personal issues can be so hard.Also for you handling that downturn. As you know I am not a fan of carers but you need to look at this as well.
If I can help Es, I will. Pm me if necessary and I will pass on anything I can think of. Just please don't think you can tackle this alone, you need help and advice.
Thinking of you, I know this takes so much out of youxxxx

 

[bemused1]

Es I so remember this stage. You have to move on and change otherwise you will crack. Is he resistant to using incontinence pads?. If so start him on pull up pants. It took a long time to get hubs to accept them.
Two things, you need to talk to continence nurse access them via your gp. Also talk to occupational therapist. You cannot continue like this, one of you will get hurt. It sounds to me like you need a hoist, not just a turner.
Es I am sorry to say this but you need to start thinking about these things.It will not go away.I know you said Nick is easy going but dealing with these most personal issues can be so hard.Also for you handling that downturn. As you know I am not a fan of carers but you need to look at this as well.
If I can help Es, I will. Pm me if necessary and I will pass on anything I can think of. Just please don't think you can tackle this alone, you need help and advice.
Thinking of you, I know this takes so much out of youxxxx

Forgot one thing, continence nurse can advise you on bowel trading, it can really help.

 

[tryingmybest]

I can't recommend the Tena pull ups enough if he will wear them? They're a godsend here. Buy the highest absorbency on-line but do get the correct size so they fit enough around the hips and bottom. Yes they are expensive but they are the best. We didn't get on at the incontinence clinic very well. Miserable nurse and would only let mum have these awful things which had no absorbency and didn't fit at all. Went back there yesterday and I asked if we could change and get tena pull-ups but she said no they didn't do them. Good luck. I do know what you're going through. I had a terrible time when Mum first came here to live. X

 

[chick1962]

Oh Es I am sorry you and Nick are having such difficult times . Like Grey I haven't got any advise on these matters yet . Sending love and hugs xxxx


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[bemused1]

Yes tmb the actual provision of pads is abysmal the same here. But what is useful is the advice on how to handle the problem. You need to talk to go first and outline the difficulties.
I was having big problems until recently when a 15 phone call from a continence specialist nurse taught me how to go about bowel training and it has improved things no end. Unfortunately a large male who is becoming immobile is a whole new problem and I think Es would benefit from a holistic look at her life. Not something the professionals are big on., so it helps if you can work things out for yourself to a certain extent. With the help of course of tp where there is so much knowledge

 

[cobden28]

Night-time inciontinence.

I can't recommend the Tena pull ups enough if he will wear them? They're a godsend here. Buy the highest absorbency on-line but do get the correct size so they fit enough around the hips and bottom. Yes they are expensive but they are the best. We didn't get on at the incontinence clinic very well. Miserable nurse and would only let mum have these awful things which had no absorbency and didn't fit at all. Went back there yesterday and I asked if we could change and get tena pull-ups but she said no they didn't do them. Good luck. I do know what you're going through. I had a terrible time when Mum first came here to live. X

Going back just over ten years ago now, when my late stepfather needed to go to the toilet a couple of times in the night - no dementia involved but he had two fractured hips so had severe difficulty walking - my Mum just couldn't cope with the extra bedding changes and washing involved - that she insisted on having two separate single beds instead of the double bed. Ray objected vigorously (he thought it was his moral right as a husband to share a bed with my Mum, his wife) but he was in no position to do anything about it.

Although Mum did continue to suffer from lack of sleep until Ray went into residential care, at least with the two single beds when she had to change Ray's sodden bedding in the middle of the night it helped reduce the amount of washing she had to cope with. Drying the bedding was always the problem because Mum's kitchen doesn't have room for a tumble dryer.

Perhaps if you have room for two single beds instead of a double, this option might help by reducing the amount of washing you have to cope with?

 

[Izzy]

Thinking of beds. Bill got a hospital bed from the District Nurse. This means that the mattress is much easier to deal with if everything gets wet - twice last night! Washing machine on at 3.30 and 6.30!

 

[Cat27]

I'm sorry you're having such a tough time Es.

Can you ask the OTs to come out & assess for a hoist or even a hospital bed that you raise to help you get Nick out?

Carers coming in the daytime would enable you to rest so you can deal with the nights.

 

[sleepless]

I would agree with the hospital bed as others have suggested, both for the wipe-clean mattress and ability to raise the height to help him to get up. My husband was given one through the Rapid Response service when he was very ill in the summer, but the District Nurses can arrange it. They can help in other ways too, so it may be a good idea to get a referral.
Thinking of you, Esmeralda.

 

[disi]

Dear Es, So very sorry you are having such a hard time with Nick. Afraid I can't offer any useful advice as I didn't get this far with Robert at home. All I can send are huge hugs and lots of love, I am thinking of you both. xxxxxxxxxxxxxxxxxxxxx

 

[nannylondon]

Hi E I did the same as other poster got two single beds and also waterproof duvet and pillows at that point Chris was mobile but wouldn't wear pads etc. He was just weeing everywhere also I got rid of carpets have no advice but sending you a big hug xx

 

[esmeralda]

Thank you so much everybody. Guess I'm a bit resistant to accepting the fact of the deteriorations, also seems to have been quick over the last couple of months. Wet I can cope with, but thanks a lot for the Tena advice Izzy. He is using the pull ups but I didn't know about the extra absorbency. Even with these I get loads of washing. Hasn't been too bad with the good weather but will get harder in the winter. Poo goes everywhere even with pull ups and that's what I struggle with because clean ups take so long, however - they are starting work on the wet room tomorrow - hurrah. Will make life much easier.

Bowel training sounds a good way forward. Hadn't thought we were at the hoist stage but like I say I'm having trouble keeping up with the rate of change. His ability to express himself is much worse although that has been more gradual, but now can't tell me what he needs. He has also gradually been losing his appetite which was always good and rarely finishes his dinner. I do things like horlicks with extra cream in.

Ha - incontinence nurse - been trying to get one of those for months. Very unhelpful woman on the phone telling me it was a two month wait to see the nurse - had already waited ages for them to contact me after GP referral. She kept saying all the nurse would do was advise me to buy pads. I insisted I needed a visit and that was about 3 months ago, not heard a thing. She probably 'forgot' to book it. Will be on the phone first thing tomorrow.

OT is supposed to be contacting me so will discuss with her.

Thanks everyone for your kindness and good advise. I will pm you bemused.
xxxxxxxxxxxxxxxxxxxxxxxxx

 

[esmeralda]

You know, I went to bed feeling so guilty after starting this thread last night because I felt like I was making an unnecessary fuss, ESPECIALLY after reading Ms K's thread. What a horrible situation for her to cope with, and her husband so young.
Anyway I'm glad now I did because there's so much good advice. It's hard to be objective when you're in the middle of it all and I know a lot of people read this board and don't ever post, which is fine, but if you are struggling do ask for help, often it's really hard to get it anywhere else. Professionals are good on leaflets but mostly don't really know what it's like to live with, and also go into defensive mode because they don't have resources.
Thanks again everybody, I really love you all.
xxxxxxxxxxxxxxxxxxxxxxx

 

[Cat27]

Never feel guilty Es. We are here for each other, for help, support & hand holding.

 

[Spamar]

Same as Cat ( congrats, Cat, by the way). Never ever feel guilty about asking for help here. We've all been there, done that at some time and sympathsize with you. So anything any of us can do to help is good! OHs continence nurse was OK and the referral was quick, a week. I think. His main problem was not being able to get to the loo, or the urine bottle ( that helped enormously at one stage) in time. She found he was drinking a lot of coffee in the evening. Stopped that, miraculous! Probably not much help to you, though!
(((((Hugs)))))

 

[esmeralda]

Thank you Cat and Spamar, I do appreciate your kindness.
Bit of a panic this morning because his left leg (the one badly affected by the stroke) was stuck out stiffly and he couldn't bend or move it. I didn't think I'd be able to get him out of bed at all, but eventually it did loosen up a bit and we managed. The problem has been that he couldn't organise how to move his feet but if you told him which foot to move and where, he could, slowly and holding on, manage. I think what is happening now is that the messages are beginning to fail to get through at all.
Bemused is right, we need a hoist. Didn't imagine we would get here so quckly
Thanks again everyone who has replied.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[sleepless]

I hope you both had a good night, and Nick is ok this morning, Esmeralda, and that all goes well with the work on the wetroom.
Thinking of you.