Incontinence

[Maggiejigs]

My husband was diagnosed Dec 2018 with behavioural variant Frontal Temporal Dementia. I know there are lots of threads on this subject but wanted to start my own. I did post some months ago that my husband had had radiotherapy in Aug 2018 for prostate cancer and became incontinent later that year. I have hoped all these months - perhaps stupidly - that things would get better but now convinced incontinence all down to his dementia snd not side effect of radiation. Neurologist suggested radiation could have triggered it

My biggest problem is the bedwetting - most mornings the bed is wet with the odd dry day for which I am grateful. Currently I have a waterproof mattress cover, a single Kylie sheet on one side of his double bed with some of the waterproofing tucked down the side to protect the mattress protector and a double Kylie sheet on top. I also have a waterproof duvet cover. Reason for the single Kylie is because he sometimes sits on edge of bed when getting up and first time he did it the pants leaked onto the mattress protector - rather wash a Kylie than mattress protector!

I did buy throw away sheets to place on top of the Kylie sheet but sadly although they are called double they do not fit a 5’ bed - the 5’ includes the tuck ins! I did tuck in one side and spread across the Kylie sheet but needless to say with my husband’s restless sleep it was a waste of time. Does anyone use throwaways that will fit a 5’ bed and tuck in at edges.

At the moment hubby wears Maxi Tena pants at night with a pad inside (I tear some of the ‘sticky bit’ off for absorbency) and Super Tena during the day with no pad. I have been buying my own pull up pants for past year but visited Incontinence Clinic last week and they will supply Tena pads - not sure how successful they will be? Also being supplied with some sheath catheters but again not sure how successful they will be as hubby still takes himself to the toilet - yes, despite wetting himself he does sometimes use the loo- even during the night - so you see my dilemma if he was to wear a sheath catheter.

Anyone explain this? At day centre yesterday from 9.30 - 3.30 - pants dry on pick up, no wetting during his time there. Cup of tea when home and 30 mins later completely soaked through to chair protector. About 40 mins later same again but no tea this time. No more drinks after that but waken to an absolutely soaked bed, even went outside the Kylie sheet to mattress protector. I have been told by nurse that the bladder can get twitchy if it doesn’t get enough fluid but I am wondering where all this fluid comes from - I feel like I am playing Russian Roulette with my husband's bladder! I am also confused as to why he is 99% dry when picked up from his day centres and let’s me have it!

Sorry this is so long winded but I am feeling much better just for having got this down in writing and off my chest. Maybe someone can recommend a decent throwaway sheet that will fit a 5’ bed with tuck ins as extra.

Many thanks.

 

[ebas]

Wish I could help but I can't.My OH is ok in the day time.Night time is the worse.He now takes his pad off in the night plus his pajamas.Was up at 2am&6am.At 7.30 he was naked plus the bed was wet.I use a waterproof mattress cover &a Kylie pad.Left him to go shopping.On My returns had messed himself.He has an appointment at the doctors next week.Although if he is no better tomorrow I'll give the doctors a ring.I am not at my best as I have only had 2 hours sleep

 

[dancer12]

My husband was diagnosed Dec 2018 with behavioural variant Frontal Temporal Dementia. I know there are lots of threads on this subject but wanted to start my own. I did post some months ago that my husband had had radiotherapy in Aug 2018 for prostate cancer and became incontinent later that year. I have hoped all these months - perhaps stupidly - that things would get better but now convinced incontinence all down to his dementia snd not side effect of radiation. Neurologist suggested radiation could have triggered it

My biggest problem is the bedwetting - most mornings the bed is wet with the odd dry day for which I am grateful. Currently I have a waterproof mattress cover, a single Kylie sheet on one side of his double bed with some of the waterproofing tucked down the side to protect the mattress protector and a double Kylie sheet on top. I also have a waterproof duvet cover. Reason for the single Kylie is because he sometimes sits on edge of bed when getting up and first time he did it the pants leaked onto the mattress protector - rather wash a Kylie than mattress protector!

I did buy throw away sheets to place on top of the Kylie sheet but sadly although they are called double they do not fit a 5’ bed - the 5’ includes the tuck ins! I did tuck in one side and spread across the Kylie sheet but needless to say with my husband’s restless sleep it was a waste of time. Does anyone use throwaways that will fit a 5’ bed and tuck in at edges.

At the moment hubby wears Maxi Tena pants at night with a pad inside (I tear some of the ‘sticky bit’ off for absorbency) and Super Tena during the day with no pad. I have been buying my own pull up pants for past year but visited Incontinence Clinic last week and they will supply Tena pads - not sure how successful they will be? Also being supplied with some sheath catheters but again not sure how successful they will be as hubby still takes himself to the toilet - yes, despite wetting himself he does sometimes use the loo- even during the night - so you see my dilemma if he was to wear a sheath catheter.

Anyone explain this? At day centre yesterday from 9.30 - 3.30 - pants dry on pick up, no wetting during his time there. Cup of tea when home and 30 mins later completely soaked through to chair protector. About 40 mins later same again but no tea this time. No more drinks after that but waken to an absolutely soaked bed, even went outside the Kylie sheet to mattress protector. I have been told by nurse that the bladder can get twitchy if it doesn’t get enough fluid but I am wondering where all this fluid comes from - I feel like I am playing Russian Roulette with my husband's bladder! I am also confused as to why he is 99% dry when picked up from his day centres and let’s me have it!

Sorry this is so long winded but I am feeling much better just for having got this down in writing and off my chest. Maybe someone can recommend a decent throwaway sheet that will fit a 5’ bed with tuck ins as extra.

Many thanks.

Hi Maggiejigs:

My husband was diagnosed with FTD @ 6 years ago. His understanding is mostly all gone so he pees wherever & whenever he wants. He wets the carpet, the floor, the bedding, in the bedroom, in the hallway, on the couch, in the kitchen, against the cupboards & who knows where else. Incontinence is the worst, I really feel for you. Last night he wet the bed (on his side only). I feel so rotten this morning because I let him sleep in a wet bed all night hoping he would learn something. Who am I kidding, learning is a thing of the past I wish I had an answer for you on how to cope with this aspect of it but unfortunately I don't . The fact that he doesn't wet himself at the day centre is odd, maybe ask the staff what they do to keep him dry. Could be he is afraid of what others will think if he wets himself there and he waits until he is comfortable (with you). The muscles around the opening of the bladder relax & release, just a guess. . Strange but everything about this illness is strange. Take care, here's hoping for many dry days ahead with many cyber hugs coming your way.

 

[DesperateofDevon]

My husband was diagnosed Dec 2018 with behavioural variant Frontal Temporal Dementia. I know there are lots of threads on this subject but wanted to start my own. I did post some months ago that my husband had had radiotherapy in Aug 2018 for prostate cancer and became incontinent later that year. I have hoped all these months - perhaps stupidly - that things would get better but now convinced incontinence all down to his dementia snd not side effect of radiation. Neurologist suggested radiation could have triggered it

My biggest problem is the bedwetting - most mornings the bed is wet with the odd dry day for which I am grateful. Currently I have a waterproof mattress cover, a single Kylie sheet on one side of his double bed with some of the waterproofing tucked down the side to protect the mattress protector and a double Kylie sheet on top. I also have a waterproof duvet cover. Reason for the single Kylie is because he sometimes sits on edge of bed when getting up and first time he did it the pants leaked onto the mattress protector - rather wash a Kylie than mattress protector!

I did buy throw away sheets to place on top of the Kylie sheet but sadly although they are called double they do not fit a 5’ bed - the 5’ includes the tuck ins! I did tuck in one side and spread across the Kylie sheet but needless to say with my husband’s restless sleep it was a waste of time. Does anyone use throwaways that will fit a 5’ bed and tuck in at edges.

At the moment hubby wears Maxi Tena pants at night with a pad inside (I tear some of the ‘sticky bit’ off for absorbency) and Super Tena during the day with no pad. I have been buying my own pull up pants for past year but visited Incontinence Clinic last week and they will supply Tena pads - not sure how successful they will be? Also being supplied with some sheath catheters but again not sure how successful they will be as hubby still takes himself to the toilet - yes, despite wetting himself he does sometimes use the loo- even during the night - so you see my dilemma if he was to wear a sheath catheter.

Anyone explain this? At day centre yesterday from 9.30 - 3.30 - pants dry on pick up, no wetting during his time there. Cup of tea when home and 30 mins later completely soaked through to chair protector. About 40 mins later same again but no tea this time. No more drinks after that but waken to an absolutely soaked bed, even went outside the Kylie sheet to mattress protector. I have been told by nurse that the bladder can get twitchy if it doesn’t get enough fluid but I am wondering where all this fluid comes from - I feel like I am playing Russian Roulette with my husband's bladder! I am also confused as to why he is 99% dry when picked up from his day centres and let’s me have it!

Sorry this is so long winded but I am feeling much better just for having got this down in writing and off my chest. Maybe someone can recommend a decent throwaway sheet that will fit a 5’ bed with tuck ins as extra.

Many thanks.

The GP can prescribe a tablet to help with bladder irritation at night , it helps decrease bed wetting. the same medication is prescribe for children with poor bladder control at night.

Hope that might help
X

 

[Maggiejigs]

Wish I could help but I can't.My OH is ok in the day time.Night time is the worse.He now takes his pad off in the night plus his pajamas.Was up at 2am&6am.At 7.30 he was naked plus the bed was wet.I use a waterproof mattress cover &a Kylie pad.Left him to go shopping.On My returns had messed himself.He has an appointment at the doctors next week.Although if he is no better tomorrow I'll give the doctors a ring.I am not at my best as I have only had 2 hours sleep

Oh dear Ebas - so so sorry to hear of your problems with your OH and how you are having to deal with his incontinence issues. Reading your post makes me realise my life at the moment isn’t so bad. I have managed to find disposable sheets at the right size so am hoping they will save me a bit of washing some days.

Thankfully my OH sleeps through the night - except when he gets up for toilet. However I don’t always sleep well worrying where this disease is taking me and know what it is like trying to function without sleep. I hope you get a good night tonight. Maybe doctor can prescribe some meds to help your OH sleep? xx

 

[Maggiejigs]

The GP can prescribe a tablet to help with bladder irritation at night , it helps decrease bed wetting. the same medication is prescribe for children with poor bladder control at night.

Hope that might help
X

Hi DesperateofDevon - thanks for taking the time to reply to my post. My OH was on a tablet to help overactive bladder but having discussed with doctor we have agreed to take him off it to see if it will make any difference. He was also on a very mild anti depressant which we have stopped as Incontinence Clinic nurse said they can cause bladder problems - . If no change within a week or it gets worse will go back on the meds.

 

[LizzieM]

Hope this doesn’t sound too simplistic (handling, literally sadly, incontinence is a compromise as to what works best individually) but try decaf tea and coffee as caffeine can exacerbate bladder spasms, this can also sometimes explain different behaviour on return from elsewhere such as daycare and lunch club. Any alcohol? Water it down... I was amazed and actually v sad when my OH PWD just didn’t realise but the positive effect continence-wise was noticeable. For other reasons he now has an indwelling catheter but that’s another story - and now the poo fairy has come to stay but sadly that’s dementia progression. No caffeine and watered down red wine still makes a difference. Rubber gloves to the fore... xx

 

[Maggiejigs]

Hope this doesn’t sound too simplistic (handling, literally sadly, incontinence is a compromise as to what works best individually) but try decaf tea and coffee as caffeine can exacerbate bladder spasms, this can also sometimes explain different behaviour on return from elsewhere such as daycare and lunch club. Any alcohol? Water it down... I was amazed and actually v sad when my OH PWD just didn’t realise but the positive effect continence-wise was noticeable. For other reasons he now has an indwelling catheter but that’s another story - and now the poo fairy has come to stay but sadly that’s dementia progression. No caffeine and watered down red wine still makes a difference. Rubber gloves to the fore... xx

Thanks for your reply LizzieM. I have been using the list from Oncology for past year as to what not to give OH to drink or eat to help the issue and the day centres assure me their coffee is decaffeinated - he comes home dry every time and hasn’t had a change during the day - saves it for me! My OH (and I) used to like a drink at weekends but he isn’t bothered now - if I have a glass of wine I give him small one watered down and when he asks for more I tell him Neurologist says he shouldn’t drink alcohol and he is happy with that response. Me, I sometimes feel like finishing the bottle but know it wouldn’t aid my sleep and I would wake up feeling depressed. Sorry to hear the poo fairy has come to stay and I hope she never comes to my door as a permanent visitor! My OH is ok for now, just has accidents when out walking - obviously being on the move after sitting around so much.

 

[silver'lantern]

I dont know how you all cope with incontinence. I know wont do it if/when the person I look after goes that way. It takes a certain someone to do that, and I am not that person!

 

[Maggiejigs]

Hi Maggiejigs:

My husband was diagnosed with FTD @ 6 years ago. His understanding is mostly all gone so he pees wherever & whenever he wants. He wets the carpet, the floor, the bedding, in the bedroom, in the hallway, on the couch, in the kitchen, against the cupboards & who knows where else. Incontinence is the worst, I really feel for you. Last night he wet the bed (on his side only). I feel so rotten this morning because I let him sleep in a wet bed all night hoping he would learn something. Who am I kidding, learning is a thing of the past I wish I had an answer for you on how to cope with this aspect of it but unfortunately I don't . The fact that he doesn't wet himself at the day centre is odd, maybe ask the staff what they do to keep him dry. Could be he is afraid of what others will think if he wets himself there and he waits until he is comfortable (with you). The muscles around the opening of the bladder relax & release, just a guess. . Strange but everything about this illness is strange. Take care, here's hoping for many dry days ahead with many cyber hugs coming your way.

Hi dancer12 - it fills me with dread to think I am just a bit further behind you on this road to hell. My friends have told me to buy a carpet shampooer but I don’t need one just yet as pull ups and clothing take the strain at the moment. I was told by an Admiral Nurse that due to disinhibition men will pee anywhere and she has known a case of a man being arrested for doing so in a shop doorway - obviously once reason known he wasn’t charged.

I did think OH didn’t want to embarrass himself at Centres by wetting himself but don’t think he is capable of that thought process. My husband will be 76 next March and I really and truly don’t think I will survive many more years with this situation and whats to come. I have struggled big time to come to terms with the illness and so grateful for our Alzheimer’s Support Group, Dementia Cafes and the fact my OH goes three days a week to a day centre - trying to make the most of it as I know there will come a time when he can’t attend the centres and I won’t have so much freedom. My OH hasn’t much conversation and I really miss having someone to talk to at home and discussing day to day things . Right back at you with a cyber hug. xx

 

[ebas]

Another dreadful night.I have made an appointment for tomorrow at the doctors.At the moment his pad is dry.He takes everything off then wets going to the toilet.Waiting for a specialist appointment at the hospital.I can cope with everything else, it's just the lack of sleep.He still crying all the time but I try to ignore it

 

[dancer12]

Hi dancer12 - it fills me with dread to think I am just a bit further behind you on this road to hell. My friends have told me to buy a carpet shampooer but I don’t need one just yet as pull ups and clothing take the strain at the moment. I was told by an Admiral Nurse that due to disinhibition men will pee anywhere and she has known a case of a man being arrested for doing so in a shop doorway - obviously once reason known he wasn’t charged.

I did think OH didn’t want to embarrass himself at Centres by wetting himself but don’t think he is capable of that thought process. My husband will be 76 next March and I really and truly don’t think I will survive many more years with this situation and whats to come. I have struggled big time to come to terms with the illness and so grateful for our Alzheimer’s Support Group, Dementia Cafes and the fact my OH goes three days a week to a day centre - trying to make the most of it as I know there will come a time when he can’t attend the centres and I won’t have so much freedom. My OH hasn’t much conversation and I really miss having someone to talk to at home and discussing day to day things . Right back at you with a cyber hug. xx

Hi Maggiejigs:

All of the PSW's that come in to bathe him and attend to his personal needs also take the time to speak to me, just to see how I am doing because they know it is a difficult time for me also. Enjoy the free you have now, my husband's behaviour isn't good so I don't have him at any day centres because I'm worried if he wets himself someone will laugh at him with him lashing out with his fists. I wish I never heard the word DEMENTIA. I do miss my activities with friends.
Take care .

 

[Maggiejigs]

I dont know how you all cope with incontinence. I know wont do it if/when the person I look after goes that way. It takes a certain someone to do that, and I am not that person!

Hi silverlantern - I can cope with bladder incontinence at moment as it is contained but not sure how I would manage if my OH was randomly wetting around the house! When we have bowel incontinence - which only happens now and again when my OH and I go for a walk - think it is the exercise that causes it as he sits around a lot and walking ‘gets things moving’ - thankfully he will strip in the bathroom and take a shower - I just bag the offending pants and put in bin. I am not sure what I would do if this became a regular occurrence and he wasn’t capable of showering - like you I am not sure if I could deal with it. However, don’t think I would have any choice and would just have to get on with it and remind myself I am stronger than I think and will do anything for my OH - after all he would not be aware he is doing wrong . You don’t say what your relationship is to the PWD you are caring for.

 

[Pink-geranium]

I dont know how you all cope with incontinence. I know wont do it if/when the person I look after goes that way. It takes a certain someone to do that, and I am not that person!

Me neither. As one of the alzheimer's booklets just told me, it is a choice to be a carer. Mind you they don't say what the alternative is. One can get a carer's assessment, is that any use?

 

[DesperateofDevon]

Me neither. As one of the alzheimer's booklets just told me, it is a choice to be a carer. Mind you they don't say what the alternative is. One can get a carer's assessment, is that any use?

A choice .... as in Hobson’s choice?

I didn’t choose this... it is expected by society & those that fund care ie Social services, NHS etc
I really resent the fact that you are meant to have choices, when the PWD is still seen as having capacity!

if my children when young made the decisions PWD do & I didn’t stop them I would be under scrutiny from social services! Ridiculous situation ! ridiculous processes!

 

[silver'lantern]

Hi silverlantern - I can cope with bladder incontinence at moment as it is contained but not sure how I would manage if my OH was randomly wetting around the house! When we have bowel incontinence - which only happens now and again when my OH and I go for a walk - think it is the exercise that causes it as he sits around a lot and walking ‘gets things moving’ - thankfully he will strip in the bathroom and take a shower - I just bag the offending pants and put in bin. I am not sure what I would do if this became a regular occurrence and he wasn’t capable of showering - like you I am not sure if I could deal with it. However, don’t think I would have any choice and would just have to get on with it and remind myself I am stronger than I think and will do anything for my OH - after all he would not be aware he is doing wrong . You don’t say what your relationship is to the PWD you are caring for.

hmmm yea.... Maybe to a certain level as you say. But its my get out now clause. I wont do personal care. Its nothing to do with him doing wrong I know it can be part of the disease, but not on my 'to do' list
I am carer for my ex husband he moved in with me 6+ years ago. he has mixed dementia ...Alzheimer's and Vascular

 

[silver'lantern]

Me neither. As one of the alzheimer's booklets just told me, it is a choice to be a carer. Mind you they don't say what the alternative is. One can get a carer's assessment, is that any use?

Yes it is a choice for me. I made a choice to be his carer. But I am in it with limits. If/when we get to incontinence/personal care I am out.

 

[Roseleigh]

A choice .... as in Hobson’s choice?

I didn’t choose this... it is expected by society & those that fund care ie Social services, NHS etc
I really resent the fact that you are meant to have choices, when the PWD is still seen as having capacity!

if my children when young made the decisions PWD do & I didn’t stop them I would be under scrutiny from social services! Ridiculous situation ! ridiculous processes!

I guess if you do not have the money to pay for care privately and the LA are refusing to allow the PWD to go into care because the PWD refuses and are deemed to have capacity, the only option is to tell ASC that you cannot cope and he is at risk because you dont trust yourself with him!

 

[dancer12]

Yes it is a choice for me. I made a choice to be his carer. But I am in it with limits. If/when we get to incontinence/personal care I am out.

Hi silver'lantern:

Yes you have a choice, but you also had a choice when you said I do to the vow of for better or worse. Welcome to the worse part. Also people don't know how much they will accept until they have to. My husband is incontinent, one day I found him taking out his pee shooter & peeing up the stairs, another day I found him standing at the top of the stairs and acting like a waterfall, peeing down the stairs, next on the floor & on the bed, did I think I would ever accept such behaviour - NO, NO,NO. But somehow I do. I wish life was always sweetheart & roses but it's not. I often wish the world was flat so I could jump off the edge but then I wonder if that would be like jumping out of the frying pan & into the fire. Now at least I know what I've got. Maybe..

 

[silver'lantern]

Hi silver'lantern:

Yes you have a choice, but you also had a choice when you said I do to the vow of for better or worse. Welcome to the worse part. Also people don't know how much they will accept until they have to. My husband is incontinent, one day I found him taking out his pee shooter & peeing up the stairs, another day I found him standing at the top of the stairs and acting like a waterfall, peeing down the stairs, next on the floor & on the bed, did I think I would ever accept such behaviour - NO, NO,NO. But somehow I do. I wish life was always sweetheart & roses but it's not. I often wish the world was flat so I could jump off the edge but then I wonder if that would be like jumping out of the frying pan & into the fire. Now at least I know what I've got. Maybe..

I made the choice to be his carer for a while ....he is not my husband.....I know my limits and I will make the choice to not do some things.
I understand others have different views and different relationships. But for me I have my limits.