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Incontinent aids dad tried everything at wits end advice please

deepetshopboy

Registered User
Jul 7, 2008
443
0
Feel for you. It's such an emotive area... I can't get OH to wear any protection if just at home as he doesn't think he needs to. 2 changes of clothing and washing machine on again and he concedes (always a new problem he has to tell me about!) ... and then worries about overnight. Will wear something if we go out though, thank goodness, but it really is the biggest problem we have as it does lead to very bad temper. Can't imagine how difficult this must be with a dad. Would have been totally impossible with mine. Don't think I ever saw him naked, whereas OH is obviously familiar so probably easier.
My dad is like a toddler i have daily tantrums name calling etc every time i get him dressed and the pull ups come out i call it daily torture
The carer tried helping him he was shouting at her to get out
 

jennifer1967

Registered User
Mar 15, 2020
3,767
0
Southampton
maybe he does need to be in a carehome when theres a whole team of people to look after him with a night team as well. you cant carry on very little sleep. you are going to make yourself ill if you are not careful.
 

deepetshopboy

Registered User
Jul 7, 2008
443
0
maybe he does need to be in a carehome when theres a whole team of people to look after him with a night team as well. you cant carry on very little sleep. you are going to make yourself ill if you are not careful.
Its getting that way .😩
Ive just tried the boots brand and they keep leaking which is a pain after so much effort to get them on him
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,400
0
Nottinghamshire
My dad was better looked after in a carehome than I could manage even with the help of 4 carers coming in everyday. It really does sound as though your dad needs that level of care now @deepetshopboy .

At home I struggled to keep my dad clean and dry but they managed him in the carehome. I think they had a toileting schedule so dad was seldom wet and they didn’t need nearly as many pull-ups as we’d been getting through. They could also keep going back if he refused care and wait for him to be in a better mood. He must have been much more comfortable than I’d managed to keep him. There were also carers on night duty so dad could go to bed at whatever time he liked. To be honest I wish I’d realised sooner that they’d care for him so well.

My dad wasn’t generally aggressive, although he was stubborn and argumentative at times, but once the incontinence really set in it was too much for me to manage...and I went home so got to sleep at night - most nights anyway.
 

deepetshopboy

Registered User
Jul 7, 2008
443
0
My dad was better looked after in a carehome than I could manage even with the help of 4 carers coming in everyday. It really does sound as though your dad needs that level of care now @deepetshopboy .

At home I struggled to keep my dad clean and dry but they managed him in the carehome. I think they had a toileting schedule so dad was seldom wet and they didn’t need nearly as many pull-ups as we’d been getting through. They could also keep going back if he refused care and wait for him to be in a better mood. He must have been much more comfortable than I’d managed to keep him. There were also carers on night duty so dad could go to bed at whatever time he liked. To be honest I wish I’d realised sooner that they’d care for him so well.

My dad wasn’t generally aggressive, although he was stubborn and argumentative at times, but once the incontinence really set in it was too much for me to manage...and I went home so got to sleep at night - most nights anyway.
Yes your right i hate to admit it ive got a ball of dread and distress in me tbh my dad probably needs sectioning as he’s getting aggressive afain after being fairly calm its not just the incontince its a raft of issues torture and hell he’s getting restless wanting to go out pulling at door shouting and not sleeping at night properly all broken sleep a hour here 3 hours then another 1 hour and neighbors will complain soon as hes in a flat with lady underneath in studio flat bed in living room
hes really got no concept of day and night
He’s difficult and abusive to me as i now have to dress him otherwise he will wear 4 shirts two hats etc he refuses to bath or shave just about manages once a week or two
I cannot( just in last two weeks take him on buses or train he’s shouting anxious etc and i dont drive i cannot barely take him into a shop last wk he tried pulling hes willy out in supermarket 😩to go toilet i quickly ran out with him hes wetting himself all the time even with pull ups on hes not wearing them or behind my bck taking them off so im taking him out and hes wetting himself outside on some rare occasions thank god hes now chocking on food coughing and very ill i took him for emergency ultrasound and he was swearing and shouting in the clinic ive had to order him new clothes and trousers and since feb hes declined rapidly and terrible in last two wks ive made another appointment in hospital and ive had no help other then my son and nurse offered to go to appointment with us nxt wk nobody rings as they are sick of it all all hes tablers gave had to be changed over my workload has incresed massively im washing hes clothes all the time everything is revolved around my dad it was before but now its all day all night ☹️
 

Jessbow

Registered User
Mar 1, 2013
3,532
0
West Hertfordshire
Suggested it was time a while ago, Now you know it is.

Why do you think he has cancer? just because he cant swallow? many dementia sufferers develop a difficulty in swallowing,, rarely is it cancer
 

Pots and Pans

Registered User
Jan 13, 2020
54
0
Yes your right i hate to admit it ive got a ball of dread and distress in me tbh my dad probably needs sectioning as he’s getting aggressive afain after being fairly calm its not just the incontince its a raft of issues torture and hell he’s getting restless wanting to go out pulling at door shouting and not sleeping at night properly all broken sleep a hour here 3 hours then another 1 hour and neighbors will complain soon as hes in a flat with lady underneath in studio flat bed in living room
hes really got no concept of day and night
He’s difficult and abusive to me as i now have to dress him otherwise he will wear 4 shirts two hats etc he refuses to bath or shave just about manages once a week or two
I cannot( just in last two weeks take him on buses or train he’s shouting anxious etc and i dont drive i cannot barely take him into a shop last wk he tried pulling hes willy out in supermarket 😩to go toilet i quickly ran out with him hes wetting himself all the time even with pull ups on hes not wearing them or behind my bck taking them off so im taking him out and hes wetting himself outside on some rare occasions thank god hes now chocking on food coughing and very ill i took him for emergency ultrasound and he was swearing and shouting in the clinic ive had to order him new clothes and trousers and since feb hes declined rapidly and terrible in last two wks ive made another appointment in hospital and ive had no help other then my son and nurse offered to go to appointment with us nxt wk nobody rings as they are sick of it all all hes tablers gave had to be changed over my workload has incresed massively im washing hes clothes all the time everything is revolved around my dad it was before but now its all day all night ☹️
You sound amazing to be managing all this. Feel sure I would not be able to cope with the sort of situations you describe. So sad as your lovely dad is still in there somewhere. Some part of him must surely recognize how much love you have for him to handle this awful illness. I can't really comment on care homes as not at that stage yet myself but from other posts it sounds like it might be better for him soon. Certainly worth exploring? Or discussing with doctor/social worker it whoever can help advise options?
 

deepetshopboy

Registered User
Jul 7, 2008
443
0
You sound amazing to be managing all this. Feel sure I would not be able to cope with the sort of situations you describe. So sad as your lovely dad is still in there somewhere. Some part of him must surely recognize how much love you have for him to handle this awful illness. I can't really comment on care homes as not at that stage yet myself but from other posts it sounds like it might be better for him soon. Certainly worth exploring? Or discussing with doctor/social worker it whoever can help advise options?
Thank you and tbh it will probably be taken out of my hands anyway in the end
Horrible horrible decision i dont want to make ive given up my life for 3 yrs devoted to my dad short of cutting my arm off ive done every thing thrown every thing at it nothing is working but im up against the worst evil illness and a system that was never designed to help or work 😒
 

deepetshopboy

Registered User
Jul 7, 2008
443
0
Suggested it was time a while ago, Now you know it is.

Why do you think he has cancer? just because he cant swallow? many dementia sufferers develop a difficulty in swallowing,, rarely is it cancer
Many have suggested care homes including strangers at the end of the day its my dad im the one making the decision im the one got to deal with the guilt qnd stress of it all and visiting him i dont have a sibling to help or mum to share the load with
Your comment smacks of lack of empathy not sure if you have a lo with dementia youve had to place in a home or thought of having to do ? its not nice
Cancer ? could be as hes not only not swallowing which im aware of with later stages of dementia also has vomiting coughing and burping for 8 weeks and has family who died with cancer of stomach and gullet could be a number of things im sure but hes declined rapidly
 

Jessbow

Registered User
Mar 1, 2013
3,532
0
West Hertfordshire
Many have suggested care homes including strangers at the end of the day its my dad im the one making the decision im the one got to deal with the guilt qnd stress of it all and visiting him i dont have a sibling to help or mum to share the load with
Your comment smacks of lack of empathy not sure if you have a lo with dementia youve had to place in a home or thought of having to do ? its not nice
Cancer ? could be as hes not only not swallowing which im aware of with later stages of dementia also has vomiting coughing and burping for 8 weeks and has family who died with cancer of stomach and gullet could be a number of things im sure but hes declined rapidly
Yup, I gave up my home, moved 70 miles to care for my mum as my dad was struggling. Dad died 6 weeks after i moved. So yes I cared for mum with dementia, insulin dependant diabetes and double incontinence. Oh yes, and registered blind. Totally on my own.

Yes I too had to make the decision to let my mum go into care in the end. Not what I wanted either, but hey- it had to happen.
was she compliant? no.

After she passed away I had to sell their home, and all that goes with that.

Do I lack empathy? No- just nearly killed myself trying to do exactly what I see you doing. Did i like putting her into care ( not my decision in the end ) No. When all came to all, it was the very best thing that could have happened for her.
Given the way you describe your fathers life, it sounds like it might very well be for him too, The way it sounds things are going you may find the decision taken away from you , and believe me, thats far worse
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,400
0
Nottinghamshire
I recognise that “ball of dread and distress” you describe @deepetshopboy and you’re right that the support we’re offered as carers is woefully inadequate. I fought tooth and nail to keep my dad in his own home til the end but eventually it became too much for me. Dad lived in a detached bungalow but still managed to bother the neighbours - it must be so much worse for you. I gave up taking him to the supermarket when he became incontinent as, like you, I couldn’t trust him not to remove his pull-ups before we went out - or he’d just refuse to wear them in the first place. We started to go out less and less.

Eventually the decision was taken away from me as dad ended up going to a carehome straight from hospital. Having him in hospital made me realise how much stress I’d been under (even though I visited him everyday) and looking back now I think I was close to carer breakdown although I didn’t realise it at the time. It sounds to me as though you’ve reached the same point now.
 

deepetshopboy

Registered User
Jul 7, 2008
443
0
I recognise that “ball of dread and distress” you describe @deepetshopboy and you’re right that the support we’re offered as carers is woefully inadequate. I fought tooth and nail to keep my dad in his own home til the end but eventually it became too much for me. Dad lived in a detached bungalow but still managed to bother the neighbours - it must be so much worse for you. I gave up taking him to the supermarket when he became incontinent as, like you, I couldn’t trust him not to remove his pull-ups before we went out - or he’d just refuse to wear them in the first place. We started to go out less and less.

Eventually the decision was taken away from me as dad ended up going to a carehome straight from hospital. Having him in hospital made me realise how much stress I’d been under (even though I visited him everyday) and looking back now I think I was close to carer breakdown although I didn’t realise it at the time. It sounds to me as though you’ve reached the same point now.
Yes i absolutely dread taking my dad out now its not a nice experience nowadays some days pass without a hitch others a a absolute nightmare ☹️
 

Buckles

Registered User
Oct 4, 2020
25
0
We had a very similar few months, risperidone really helped with the anger - and there's quite a wide dosing available so might be worth asking the doctor if the effect has worn off a bit. I know everyone's very different but heres what worked for us when we were at a similar stage:

At the beggining he was so angry and mortified and confused (understandably!!!). After a few weeks getting nowhere with carers - I ended up staying with him for a week and changing him 5-8 times a day intensively every time he was wet. I wouldn't argue or EVER mention incontinence. I would say "oh look dad there's a mark on these jeans lets go to the bathroom and sort it", then i would get him to wash his hands with a clean wet towel to distract him and keep him talking about other things (we likely to mostly complain about things and have a wee bitch session about nonsense, being light-heartedly angry about something unrelated together seemed to help). Whilst that was going on I would crack on and work quickly. It worked and after that week he let carers do personal care - not always with delight but now he accepts carers doing it and sometimes even says thankyou.

In terms of our incontinence set-up, we went through all you're doing, our local authority stuff was soooooo pointless and not fit for purpose - not absorbant, weird sizes, cheap ****.

He hated pull-ups because you had to take his shoes and trousers off to change him every time. So we landed on TENA Proskin slips in Ultima absorbance (they have the tabs so you can put them on and off without getting in and out of trousers). Then on top - to keep them in place and feel secure we have net tena pull-up pant things (off amazon). The net things just have to come down like trousers above the knee and not completely off with changes - so quicker and less hassle.

In addition - i would buy Conti soft wipes (which are BIG dry wipes) and sentex spray cleaning foam (spray the foam onto the wipe and then clean bottoms - cleans everything very quickly, a quick dry with a second wipe and done). Do not spray it onto the person - not pleasant.

Try to avoid double pads - you end up with pressure sores.
i get all of this off amazon.

Good luck and make sure you have a drink waiting for you at the end of the day.
 

Buckles

Registered User
Oct 4, 2020
25
0
Also re: trousers, i dont know your dad's style but we found these easy to wear trousers with an expandable waist band - so they fit like joggers but look like smart trousers, I think you can find them on most dementia websites and there are similar 'expandaband' ones online.

all the best
 

deepetshopboy

Registered User
Jul 7, 2008
443
0
We had a very similar few months, risperidone really helped with the anger - and there's quite a wide dosing available so might be worth asking the doctor if the effect has worn off a bit. I know everyone's very different but heres what worked for us when we were at a similar stage:

At the beggining he was so angry and mortified and confused (understandably!!!). After a few weeks getting nowhere with carers - I ended up staying with him for a week and changing him 5-8 times a day intensively every time he was wet. I wouldn't argue or EVER mention incontinence. I would say "oh look dad there's a mark on these jeans lets go to the bathroom and sort it", then i would get him to wash his hands with a clean wet towel to distract him and keep him talking about other things (we likely to mostly complain about things and have a wee bitch session about nonsense, being light-heartedly angry about something unrelated together seemed to help). Whilst that was going on I would crack on and work quickly. It worked and after that week he let carers do personal care - not always with delight but now he accepts carers doing it and sometimes even says thankyou.

In terms of our incontinence set-up, we went through all you're doing, our local authority stuff was soooooo pointless and not fit for purpose - not absorbant, weird sizes, cheap ****.

He hated pull-ups because you had to take his shoes and trousers off to change him every time. So we landed on TENA Proskin slips in Ultima absorbance (they have the tabs so you can put them on and off without getting in and out of trousers). Then on top - to keep them in place and feel secure we have net tena pull-up pant things (off amazon). The net things just have to come down like trousers above the knee and not completely off with changes - so quicker and less hassle.

In addition - i would buy Conti soft wipes (which are BIG dry wipes) and sentex spray cleaning foam (spray the foam onto the wipe and then clean bottoms - cleans everything very quickly, a quick dry with a second wipe and done). Do not spray it onto the person - not pleasant.

Try to avoid double pads - you end up with pressure sores.
i get all of this off amazon.

Good luck and make sure you have a drink waiting for you at the end of the day.
Useful advice thank you
Got trousers off a website called able to wear had to buy about 20 at £40 each roughly 😮 as dads always using up trousers due to wetting brings back memories of having a newborn 👶😩
Elastic waistband no belts zips etc and ms joggers were cheap n cheeful
La Nurses pull ups okish they are tena but they sent out wrong ones not holding the wee so this week sending bulk supply out ie 6 big cupboard boxes and i give the unused bags backs approx 20 bin liners full as they supply them in bulk
 

Dotty60

New member
Feb 12, 2018
1
0
Dads become increasingly incontinent since nov wetting himself i bought tena pads and tena mens pull up never used them till this week as knew id have a royal battle on my hands and was dreading it he’s extremely private but so confused and true to form he wont barely wear them he very confused about dressing anyway so its all a nightmare takes a hour of shouting snatching clothes off me wearing 2 pairs of trousers getting stuff back to front etc etc till he finally dressed thats without trying to make him understand the way and reason why he needs pads .The pads aren’t staying in place in hes boxer shorts if I actually manage to stick them on n get them on then the pull ups he look at them and said everybody will be laughing at me I sympathise and get what hes saying not very glamorous n do look like a nappy it’s heartbreaking actually but what's the alternative im dreading the summer ive been on loads of websites buying pants with built in pads but had to send them back as pads loose or too big etc .the tena pads are loose too and im expecting them to fall out of the trousers 😩😩at some point on top of that now have to replace dads trousers as hes not able to do up trousers ie zips belt button and put on lockdown weight in addition to tucking all hes jumpers in to trousers adding to the bulk so replacing them will cost £100s its a complete nightmare .any advice on the incontinent issue
Hi, I have issues as my relative is doubly incontinent & i often find that through the night they have had their hands in what they've done which drives me crazy & I end up shouting. My neighbor has contacted S,Services who have visited & telephoned which has made me feel as if I'm losing my mind. We often have episodes of dementing behaviours lasting 72 hrs all day & night, not one of my neighbors has ever knocked on my door to offer support but they have no problem reporting you when they have no idea what you're dealing with.
So just be wary when having issues outsiders can & do cause you further problems.
I used to dress my relative until it got to the point of several was loads most days now as they are much less mobile & do not like to go outside they live in easy night wear & soft cosy jumpers the recliner chair used Is covered in inco sheets and special washable one for the bed & I use a wide variety of inco pads pull ups etc on the body, special spray foam cleaner for the body & on & on & yes its very expensive. You have every right to use your Dads own money, stay strong 🙏
 

deepetshopboy

Registered User
Jul 7, 2008
443
0
Hi, I have issues as my relative is doubly incontinent & i often find that through the night they have had their hands in what they've done which drives me crazy & I end up shouting. My neighbor has contacted S,Services who have visited & telephoned which has made me feel as if I'm losing my mind. We often have episodes of dementing behaviours lasting 72 hrs all day & night, not one of my neighbors has ever knocked on my door to offer support but they have no problem reporting you when they have no idea what you're dealing with.
So just be wary when having issues outsiders can & do cause you further problems.
I used to dress my relative until it got to the point of several was loads most days now as they are much less mobile & do not like to go outside they live in easy night wear & soft cosy jumpers the recliner chair used Is covered in inco sheets and special washable one for the bed & I use a wide variety of inco pads pull ups etc on the body, special spray foam cleaner for the body & on & on & yes its very expensive. You have every right to use your Dads own money, stay strong 🙏
Thank you the way things are going looks like my dad will be going into a home i fought against it i have a fear of of care homes I despise them
i tried everything to keep him and cope with it all ..just impossible as my son said im not god
Too many things going against m dementia is winning combined with a complete lack of family help or support from so called professionals
Even the risperdrone antipsychotic tabs are not working i think hes become immune but not doing on them hes face is purple on high dose all stiff cannot walk properly cant dress hands shaking when i try cutting it down he gets aggressive 🙄drs and pychatrist wont help want to keep him onnit will not try anything else no help from sw shes left
Dads hallucinating peeing and spitting all over the floor
Im slipping on it desperately trying to keep hes flat clean washing cooking meds taking out all day n evening he not wanted to stay out wants bck in then wants to go back out restless up all night the list is endless it’s emotionally and physically exhausting
 

Banjomansmate

Registered User
Jan 13, 2019
2,786
0
Dorset
There comes a time when you just have to accept that it is impossible for you to cope by yourself or even with outside help and residential care is the only sensible outcome because your loved one with dementia needs 24 hour care and support from an army of carers.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,400
0
Nottinghamshire
@deepetshopboy I've been where you are with my dad and, even though he wasn't aggressive, he was uncooperative and it was impossible to keep him clean and safe and keep his bungalow clean. I think we tend to forget that someone with dementia is seriously ill. It beggars belief that we are left to cope with such a serious illness on our own. It wouldn't happen with any other illness. You've done your best and it's time for the professionals to step up. Carehomes aren't all bad. My dad was better in his than I could have kept him at home.

You can still look after your dad - by making sure the carehome is right for him and do their best for him. Don't feel you've failed him. Sometimes the best thing to do is accept help from others.
 

TOMMY47

New member
May 15, 2021
1
0
Dads become increasingly incontinent since nov wetting himself i bought tena pads and tena mens pull up never used them till this week as knew id have a royal battle on my hands and was dreading it he’s extremely private but so confused and true to form he wont barely wear them he very confused about dressing anyway so its all a nightmare takes a hour of shouting snatching clothes off me wearing 2 pairs of trousers getting stuff back to front etc etc till he finally dressed thats without trying to make him understand the way and reason why he needs pads .The pads aren’t staying in place in hes boxer shorts if I actually manage to stick them on n get them on then the pull ups he look at them and said everybody will be laughing at me I sympathise and get what hes saying not very glamorous n do look like a nappy it’s heartbreaking actually but what's the alternative im dreading the summer ive been on loads of websites buying pants with built in pads but had to send them back as pads loose or too big etc .the tena pads are loose too and im expecting them to fall out of the trousers 😩😩at some point on top of that now have to replace dads trousers as hes not able to do up trousers ie zips belt button and put on lockdown weight in addition to tucking all hes jumpers in to trousers adding to the bulk so replacing them will cost £100s its a complete nightmare .any advice on the incontinent issue
TRY THE QUILTED ONE PIECE INCONTINENCE PANTS [TENNER STYLE], PLENTY OF UNBRANDED LESS EXPENSIVE PRODUCTS AVAILABLE. THE PRESCRIPTION INSERTS CAN BE USED INSIDE FOR EXTRA PROTECTION. THESE ARE ALL THROW AWAY, SAVES WASHING. TRACKSUIT BOTTOMS ARE COMFORTABLE AND VERY PRACTICAL. I BUY SOME OF MY CLOTHES [PRELOVED] FROM A CHARITY SHOP, SOME ARE EVEN NEW WITH LABELS BUT SAVES MONEY. THE PROCEEDS HELP THE CHARITY. ENSURE BEDS ARE PROTECTED, BLUE PLASTIC TARPORLINGS ARE WATERPROOF TO PROTECT THE MATRESS [CHEAP= I.E. POUNDLAND]. WE HAVE USED FOAM STYLE PET BEDS [ONTOP] WITH PUPPY TRAINING PADS AS THEY ARE CHEAPER. THE FORMER WASH WELL AND THE LATTER ARE THROW AWAY. WE EVEN USE BLACK DOGGY BAGS TO PUT USED PADS IN. SOME READERS MAY BE TUTTING BUT THIS PROBLEM CAN BE MANAGED AND YOU CAN DO IT ON A BUDGET. REMEMBER THE 5 P'S PRIOR PLANNING PREVENTS POOR PERFORMANCE. BEST WISHES.
 

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