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Incontinence

TNJJ

Registered User
May 7, 2019
1,056
cornwall
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.
We all do..I have been my dads carer for over 3years and have done the personal care bit etc.But things change.
I will no longer be my dads main carer as a lot of the time I feel suffocated and stressed.
I have decided to hand responsibility back to the state .GP and SS and dad himself as apparently he has”capacity “ He has carers 4X a day anyway.

I think everybody has to recognise their limits.I need to “save” myself before I become ill..
 

silver'lantern

Registered User
Apr 23, 2019
166
We all do..I have been my dads carer for over 3years and have done the personal care bit etc.But things change.
I will no longer be my dads main carer as a lot of the time I feel suffocated and stressed.
I have decided to hand responsibility back to the state .GP and SS and dad himself as apparently he has”capacity “ He has carers 4X a day anyway.

I think everybody has to recognise their limits.I need to “save” myself before I become ill..
well done for realising and acting on it. the time you do spend with him will better for it
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
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.
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.
Hey Silver'lantern:

That's cool, your position is understandable.:)
 

Maggiejigs

Registered User
Apr 22, 2018
52
Hey Silver'lantern:

That's cool, your position is understandable.:)

Unfortunately some of us don't have the choice of stepping back and letting SS take control - we are married to the PWD. If I was to do that then the upshot would be that they place him in a care home which would then be funded by him. At £1000 a week for care home fees our savings (or his) would soon quickly disappear and I believe when his money runs out they can put a charge on the marital home! It's the unknown that is hard to live with - I don't know how long my OH has in this world, if I did then maybe I could consider a care home somewhere along the line based on our finances - but a crystal ball I do not have!
 

silver'lantern

Registered User
Apr 23, 2019
166
Unfortunately some of us don't have the choice of stepping back and letting SS take control - we are married to the PWD. If I was to do that then the upshot would be that they place him in a care home which would then be funded by him. At £1000 a week for care home fees our savings (or his) would soon quickly disappear and I believe when his money runs out they can put a charge on the marital home! It's the unknown that is hard to live with - I don't know how long my OH has in this world, if I did then maybe I could consider a care home somewhere along the line based on our finances - but a crystal ball I do not have!
yes i understand that too. i have said how we all have different views and different relationships. i was just stating how i personally feel and how i wont do personal care.i will do the best i can for as long as i can like us all. and like us all we have limits for whatever reason, be it physical/emotional/financial whatever reason. we are all different linked by the thread of dementia and the fact we care.
 

AlisonI

Registered User
Aug 22, 2013
6
Incontinence is my biggest challenge at the moment and none of the nurses or CPNs seem to be able to offer me any useful advice or solutions. The problem is that my OH wets the bed every night despite wearing max capacity pull up pants. His pjs get soaked through so he lies in urine all night and now has quite extensive burns all along his side. I wash a ton of bedding including kylie sheets every morning and have nearly reached saturation point ( forgive the pun). I even bought a pair of those very expensive pj trousers which soak up the urine so it doesn't leak onto the bed but they are still wet inside so did nothing to help the urine burns. As a last resort I have been leaving his pjs off so that the kylie sheets soak up the urine but he doesn't have wet cloth next to his skin and at last it seems to have done the trick and his burns are beginning to heal. Fingers crossed this is my solution. Don't get me started on the poo as that has reached a whole new level as I play hide and seek the poo around the house. I was blaming the dog until it started turning up inside drawers.
 

TNJJ

Registered User
May 7, 2019
1,056
cornwall
Incontinence is my biggest challenge at the moment and none of the nurses or CPNs seem to be able to offer me any useful advice or solutions. The problem is that my OH wets the bed every night despite wearing max capacity pull up pants. His pjs get soaked through so he lies in urine all night and now has quite extensive burns all along his side. I wash a ton of bedding including kylie sheets every morning and have nearly reached saturation point ( forgive the pun). I even bought a pair of those very expensive pj trousers which soak up the urine so it doesn't leak onto the bed but they are still wet inside so did nothing to help the urine burns. As a last resort I have been leaving his pjs off so that the kylie sheets soak up the urine but he doesn't have wet cloth next to his skin and at last it seems to have done the trick and his burns are beginning to heal. Fingers crossed this is my solution. Don't get me started on the poo as that has reached a whole new level as I play hide and seek the poo around the house. I was blaming the dog until it started turning up inside drawers.
Hi.The trouble with pull ups they are ok for people who are mobile and who don’t pee a lot.

Have you tried the “purple “ Tena pads..I think they are Super Plus. They are supposed to last 8 hours overnight.They have tabs on them like pampers.. We use these a lot overnight in care..Try and ask the incontinence nurse..It should all be free.
 

Maggiejigs

Registered User
Apr 22, 2018
52
Hi.The trouble with pull ups they are ok for people who are mobile and who don’t pee a lot.

Have you tried the “purple “ Tena pads..I think they are Super Plus. They are supposed to last 8 hours overnight.They have tabs on them like pampers.. We use these a lot overnight in care..Try and ask the incontinence nurse..It should all be free.
Incontinence is my biggest challenge at the moment and none of the nurses or CPNs seem to be able to offer me any useful advice or solutions. The problem is that my OH wets the bed every night despite wearing max capacity pull up pants. His pjs get soaked through so he lies in urine all night and now has quite extensive burns all along his side. I wash a ton of bedding including kylie sheets every morning and have nearly reached saturation point ( forgive the pun). I even bought a pair of those very expensive pj trousers which soak up the urine so it doesn't leak onto the bed but they are still wet inside so did nothing to help the urine burns. As a last resort I have been leaving his pjs off so that the kylie sheets soak up the urine but he doesn't have wet cloth next to his skin and at last it seems to have done the trick and his burns are beginning to heal. Fingers crossed this is my solution. Don't get me started on the poo as that has reached a whole new level as I play hide and seek the poo around the house. I was blaming the dog until it started turning up inside drawers.
Alisonl I feel your pain - my OH has wet the bed big time these past three nights and like you have washing machine on daily now. Thankfully it never soaks to the waterproof duvet cover - which is a pain to get dried - but top sheet, bottom sheet, double bed Kylie sheet all soaking. Found him lying on other side of bed this morning - obviously didn’t like lying on wet part, but the other side was also soaked! He has never worn PJs but now wears thermal socks and a thermal long sleeved top - which is normally wet too. It’s unbelievable given that he has no drinks after 5 pm! Onwards and upupwards!
 

Stayingalive

Registered User
Nov 24, 2019
23
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.
I completely agree with you silverlantern and I get a bit fed up of reading about so many saintly women who are slaves to their husbands/partners. It makes no difference if you are married to someone or not, it's someone you once loved, and so you feel an obligation to care for them in their illness, but there are limits. I think that if my husband was in his right mind he wouldn't want me to be sitting here depressed and lonely, frustrated by the things I can't do any more. That would be his care for me if he were capable.
We went to a social event last week, something he's enjoyed in the past, a late Christmas meal, but he got confused by the noise and chatter of 40 people, he ate the cold starter and the hot starter but then insisted that we leave before the main course. I was enjoying a rare night out and was fed up that he wanted to leave but there was no choice about that as he would have got angry and started making a scene.
Fortunately incontinence hasn't featured so far, though he does always take a leak while we're out walking, even just round the village. I just try to make sure that no-one's around.
The most recent challenge is 'pantomime DIY' - he used to be pretty 'handy' and could fix most things, now he's trying to do DIY but it's disastrous and he uses, for example, Savlon instead of glue and will not accept that it won't work. He is in the process of moving a picture, for no reason at all, he's made several large holes in the wall in the lounge in the process and after 3 weeks it's still unfinished. He is insisting on 'filling' the holes with glue. It's like the scenes in the pantomime where someone completely trashes a room in the guise of mending it.
I think you can see that I'm just about hanging onto my sense of humour, but we had such a row about the Savlon yesterday, even if I go and fetch the right stuff and give it to him he will not accept that he's wrong. He always was a stubborn person.
This morning he got up and put his coat and shoes on and announced that he's 'going to London'. That's his default when he's upset, so maybe that's because of the row yesterday (though I don't suppose he remembers it). I can't physically stop him leaving the house, he's like a toddler but he's stronger than me. I persuaded him to have a cup of tea and then eventually go back to bed but it was a close run thing. No idea what his mood will be when he wakes up again. Then I'm due at work today, as in order to keep some sanity I work part-time (17.5 hours, very flexible times). I know that many people would say that there's no way I can work and I should give it up to care for him, but I'm already getting counselling for depression and being at home 24/7 would really do for me.
Having carers come in several times a day wouldn't work. He can get himself up and dressed, he can sometimes make himself a cup of tea, sometimes not (cold milk with teabag floating in it), I make sure I'm home to get lunch, and if he goes out it's just a harmless walk round the village.
So we're struggling on, but quite often he doesn't know who I am and wants to go out looking for his wife. Several nights a week he's awake every hour, and I don't think a carer would help with that as it's just 3/4 nights a week and in any case someone else dealing with this would still wake me up.
So we're investigating a care home for respite so I can get a week's unbroken sleep say once a month, and be able to go out and live a 'normal' life. I know that many of the contributors to these forums would be scathing, as they're dealing with much worse than this day and night, but I have a life-limiting condition, I may have about another 5-8 years, and I'm not going to spend those as a carer. I'd like to think that in the reverse situation I wouldn't want to ruin the last few years of my husband's life by shackling him to me.
It's rarely said in these discussions, the whole tone is how terrible the life of a carer is but how it can't be avoided, and then there's intense guilt when they eventually go into a home. Well I don't want to erase more than 50 years of largely happy togetherness (we got together very young) by being forced to watch him decline day by day and hour by hour. My children don't want to see me dragged down by it either. So I will be seeking a home for him soon so that I can go on loving him but at a distance.
Sorry for the length of this reply, but I was saddened by the 'holier than thou' attitude of some of the answers on this thread. You have a life too, you have needs too.
 

ebas

Registered User
Aug 8, 2019
72
I completely agree with you silverlantern and I get a bit fed up of reading about so many saintly women who are slaves to their husbands/partners. It makes no difference if you are married to someone or not, it's someone you once loved, and so you feel an obligation to care for them in their illness, but there are limits. I think that if my husband was in his right mind he wouldn't want me to be sitting here depressed and lonely, frustrated by the things I can't do any more. That would be his care for me if he were capable.
We went to a social event last week, something he's enjoyed in the past, a late Christmas meal, but he got confused by the noise and chatter of 40 people, he ate the cold starter and the hot starter but then insisted that we leave before the main course. I was enjoying a rare night out and was fed up that he wanted to leave but there was no choice about that as he would have got angry and started making a scene.
Fortunately incontinence hasn't featured so far, though he does always take a leak while we're out walking, even just round the village. I just try to make sure that no-one's around.
The most recent challenge is 'pantomime DIY' - he used to be pretty 'handy' and could fix most things, now he's trying to do DIY but it's disastrous and he uses, for example, Savlon instead of glue and will not accept that it won't work. He is in the process of moving a picture, for no reason at all, he's made several large holes in the wall in the lounge in the process and after 3 weeks it's still unfinished. He is insisting on 'filling' the holes with glue. It's like the scenes in the pantomime where someone completely trashes a room in the guise of mending it.
I think you can see that I'm just about hanging onto my sense of humour, but we had such a row about the Savlon yesterday, even if I go and fetch the right stuff and give it to him he will not accept that he's wrong. He always was a stubborn person.
This morning he got up and put his coat and shoes on and announced that he's 'going to London'. That's his default when he's upset, so maybe that's because of the row yesterday (though I don't suppose he remembers it). I can't physically stop him leaving the house, he's like a toddler but he's stronger than me. I persuaded him to have a cup of tea and then eventually go back to bed but it was a close run thing. No idea what his mood will be when he wakes up again. Then I'm due at work today, as in order to keep some sanity I work part-time (17.5 hours, very flexible times). I know that many people would say that there's no way I can work and I should give it up to care for him, but I'm already getting counselling for depression and being at home 24/7 would really do for me.
Having carers come in several times a day wouldn't work. He can get himself up and dressed, he can sometimes make himself a cup of tea, sometimes not (cold milk with teabag floating in it), I make sure I'm home to get lunch, and if he goes out it's just a harmless walk round the village.
So we're struggling on, but quite often he doesn't know who I am and wants to go out looking for his wife. Several nights a week he's awake every hour, and I don't think a carer would help with that as it's just 3/4 nights a week and in any case someone else dealing with this would still wake me up.
So we're investigating a care home for respite so I can get a week's unbroken sleep say once a month, and be able to go out and live a 'normal' life. I know that many of the contributors to these forums would be scathing, as they're dealing with much worse than this day and night, but I have a life-limiting condition, I may have about another 5-8 years, and I'm not going to spend those as a carer. I'd like to think that in the reverse situation I wouldn't want to ruin the last few years of my husband's life by shackling him to me.
It's rarely said in these discussions, the whole tone is how terrible the life of a carer is but how it can't be avoided, and then there's intense guilt when they eventually go into a home. Well I don't want to erase more than 50 years of largely happy togetherness (we got together very young) by being forced to watch him decline day by day and hour by hour. My children don't want to see me dragged down by it either. So I will be seeking a home for him soon so that I can go on loving him but at a distance.
Sorry for the length of this reply, but I was saddened by the 'holier than thou' attitude of some of the answers on this thread. You have a life too, you have needs too.
I agree with you.You .need to have a break.My OH has been in hospital for the last 6 weeks with 3 days at home in the middle.I didn't realise how near to breaking point I was.Yesterday I went to see him & he was trying to pull his catheter out all the time.When he comes home the first thing I am going to do is to see if I can get him regular respite.
 

White Rose

Registered User
Nov 4, 2018
359
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.
I am so appalled with what carers of PWDs have to deal with. Like you @silver'lantern I've also said when incontinence begins that will be the end of being a carer for me, we've been together many years but not married. However, I do wonder, because it seems that we do adapt to what is thrown at us and just get on with it. My partner has the odd accident being too late to the toilet, not getting his clothes down in time, I just clear it up and get on with life (sometimes rather angrily though!) but I'm sure when he was diagnosed I told myself what my limits were - must have gone past those now though! So if bed wetting starts, what then - but peeing down the stairs, against cupboards, in the kitchen, chairs, no, no, no - how do you deal with it @Maggiejigs , @ebas , @dancer12 ???? And that along with lack of sleep, the worry, the workload of all the washing. Something must be done to find a cure, there needs to be more funding.
 

Grahamstown

Registered User
Jan 12, 2018
1,609
East of England
So if bed wetting starts, what then -
This is starting to be a worry for me because he is so weak now through lack of food and drink. He can get to the toilet although trousers are a problem and he is better in pull ups. I actually started wondering if I should put some protection on the mattress but not sure what.
 

ebas

Registered User
Aug 8, 2019
72
I put a waterproof cover on the mattress,then I put a Kylie pad with tucking in material at both sides on top of that.Then I put the sheet on.They can be bought at a reasonable price from Amazon.When he had the catheter fitted I put a Kylie pad over the carpet at the side of the bed in case there were any leaks
 

Grahamstown

Registered User
Jan 12, 2018
1,609
East of England
I put a waterproof cover on the mattress,then I put a Kylie pad with tucking in material at both sides on top of that.Then I put the sheet on.They can be bought at a reasonable price from Amazon.When he had the catheter fitted I put a Kylie pad over the carpet at the side of the bed in case there were any leaks
Sounds like what I need to know, thank you.
 

Lladro

Registered User
May 1, 2019
119
Hi, incontinence is bad enough - my OH decided to start pooing in the bath - which was a surprise - as was waking up this morning to poo all over the landing carpet and two of the bedrooms, as she had wandered around during the night. As a bloke, didn't expect to be Googling "ladies incontinence pants", nevertheless , purchased my first set from Tescos today and ordered in bulk from Amazon for tomorrow! Its amazing what you have to learn!
Seriously , we went to the doctors this morning and I believe that it is a consequence of reaction to the medication - She didn't realise that she had been to the loo and was unaware of the mess. We will see what this evening brings. Chief Poo-clearer-up is one of my many titles.
My sympathies to you - Its tough.
 

Scrimjay

Registered User
Mar 31, 2019
15
What I don't understand is how quickly my OH's incontinence has come on. He has been wearing pull up pants for a little while (as a precaution, because he used to worry about going to the loo when out) and they stayed dry. But about 6 weeks ago, he suddenly started being incontinent (urine only) during the night, every night. Fortunately, I've only had to change the sheets on a couple of occasions. For about 2 weeks now, he's become incontinent during the day & again this is every day. I try to persuade him to go to the loo every 2 or 3 hrs, but he always tells me he doesn't need to go. I suggest that it's good exercise, anyway, as he just sits in his chair the majority of the time. When he agrees to go to the loo, he does have a wee. He still seems to be aware that he needs a bowel movement, although I think it may taking a while to register, as I can tell it's imminent, as he seems to move around in his chair uncomfortably. He's had various tests & there's no infection & his prostate is ok. Just seems so strange that it's happened like this! It seems he doesn't get the signal anymore.
 

Maggiejigs

Registered User
Apr 22, 2018
52
What I don't understand is how quickly my OH's incontinence has come on. He has been wearing pull up pants for a little while (as a precaution, because he used to worry about going to the loo when out) and they stayed dry. But about 6 weeks ago, he suddenly started being incontinent (urine only) during the night, every night. Fortunately, I've only had to change the sheets on a couple of occasions. For about 2 weeks now, he's become incontinent during the day & again this is every day. I try to persuade him to go to the loo every 2 or 3 hrs, but he always tells me he doesn't need to go. I suggest that it's good exercise, anyway, as he just sits in his chair the majority of the time. When he agrees to go to the loo, he does have a wee. He still seems to be aware that he needs a bowel movement, although I think it may taking a while to register, as I can tell it's imminent, as he seems to move around in his chair uncomfortably. He's had various tests & there's no infection & his prostate is ok. Just seems so strange that it's happened like this! It seems he doesn't get the signal anymore.
Scrimjay you are describing my hubby to a T - used to get up in night for a wee but now he doesn’t. He wears Tena Proskin Ultima nappy now with plastic pants on top and the nappy is absolutely soaking in morning but wearing plastic pants on top have helped a little - the odd night bed is dry but 99% of time it is wet. I really am gobsmacked by how much wee he produces during the night as he has no drinks after 6 pm.

With regard to BMs he has odd hiccup in not quite getting there on time but that’s not a problem as he wears pull ups during day because of bladder issues. However if we are out he sometimes soils himself if it is busy e.g. last week we walked in the local park and it was really busy because the sun was out and I now realise it is down to anxiety - result, we don’t go out much together sadly. My husband has bvFTD and I have met spouses whose husbands have same dementia but they are not incontinent - however they are all about 12 years younger than my hubby!
 

Scrimjay

Registered User
Mar 31, 2019
15
Thanks for your comments, Maggiejigs. My OH has mixture of Alzheimers & Vascular dementia, but he is 86, so perhaps these things come on more quickly the older the person is? At the moment, I'm just buying the Boots unisex pull up pants, which are generally ok.. They seem to hold plenty of liquid, but I'll bear in mind the combination you use. Fortunately, he sleeps on an inflatable plastic air bed, which is on top of the mattress, to help with his back, so this saves the mattress, if there is any leakage!
 

Joyt

Registered User
Jun 30, 2018
46
yes i understand that too. i have said how we all have different views and different relationships. i was just stating how i personally feel and how i wont do personal care.i will do the best i can for as long as i can like us all. and like us all we have limits for whatever reason, be it physical/emotional/financial whatever reason. we are all different linked by the thread of dementia and the fact we care.
It was that level of personal care that finally prompted my decision to look for residential care. Now my PWD is in care it has got so much worse as he is now doubly incontinent. The care home manages this so much better than I ever could. He is clean and content. And I have a life still. And our children still have one parent left.

Stick to your red lines.

Hugs xxxx
 

jenniferjean

Registered User
Apr 2, 2016
665
Basingstoke, Hampshire
It was that level of personal care that finally prompted my decision to look for residential care. Now my PWD is in care it has got so much worse as he is now doubly incontinent. The care home manages this so much better than I ever could. He is clean and content. And I have a life still. And our children still have one parent left.

Stick to your red lines.

Hugs xxxx
I often wish that this forum had a "like" button. This is one of those posts where I would use it.