Incontinence - Can anything be done?

[SMBeach]

Hello.
Dad aged 81 is increasingly depressed from double incontinence. Bowel incontinence is less often. He gets frustrated and also angry. He doesn't believe its ok to expect someone to live with incontinence or that managing it with pull up pants and convenes is the answer. He feels nobody is really making any difference to his quality of life and also feels he is essentially being left to die like this. He doesn't want to die alone or with incontinence.

When he's down, he's really down. Refers to ending things, life not worth living, degrading etc etc and he says it with the lowest most depressing voice when like this. It's extremely sad to listen too. Sometimes he will leave me voice messages suggesting he's dying and he'll just die alone and uses a tone of voice as though to get at me, like its down to me to correct this. Like its somehow my fault. Dad has been diagnosed schizophrenia too (at age 75) but nobody knew about his dementia symptoms then as he lives alone and so i'm not convinced that diagnosis was correct but he does get very angry. I really tire of being made to feel this way just because he is and i've had the gp out to discuss anti-depressants and spoken with his mental health nurse. They've all spoken with dad about it but the outcome is that yes while he does feel really low during these episodes, he wouldn't actually take his own life and feels he copes well considering and so no anti depressants are prescribed. This just annoys me more. Why should i have to listen to such voice messages if nobody, including dad are going to do anything about it. What does sending me these worrying sometimes arrogant messages actually achieve? what is the aim here, apart from to make me feel responsible and worried. Its got to the point that I don't even feel worried, I just feel annoyed. I just think leave me alone!!!! ( I work, I'm a single parent to 3 teens who are testing me a lot right now to boot). and of course I'm 500 miles away. Please don't think i don't do much for dad. I do sooooo much daily. Technology has helped a great deal here. Its surprising how much can be done from so far. Practical stuff is done by carers and to be honest, even if i did live closer, i still wouldn't be doing practical toilet stuff with dad as that would feel very weird and wrong for me as father daughter relationship.

Anyway, as far as dad is concerned, the only thing that will help him is if' everyone starts working together' to 'stop' the incontinence, or at least manage it better. I don't know how anyone can manage it better? He's had many different brands of pull ups, pads, convenes etc. and had incontinence nurse out two or three times. He has 4 carer visits per day. I send automatic pop up screen reminders that show a big picture of a loo telling him to go try use the loo even if he doesn't need as this may avoid accidents/wet clothes. That pops up every 2 hrs throughout the day, everyday. Sometimes he leaves sarcastic voice messages about the reminder even though its always been there and we've discussed it and he's ok'd it with his approval. I don't want to patronise or offend dad so i always run things by him first as a suggestion.

As far as i'm aware, nothing will be offered surgically to dad for incontinence because of his age - plus the dementia. I may be wrong but everything i've read suggests that is the case. If I thought there was anything could be done surgically that could stop this for him, i'd book dad to have it done in a shot. even if it had to be private, but that would depend on cost. Has anyone had experience of more effective treatment for incontinence in some one this age (81)? I'd be keen to hear. sorry for the length.

 

[Jessbow]

I dont think there is anything you can do.
'Just keep saying ''I'll look into it dad''

How did he get onwith convenes? Surely that solves one problem.
No Two's is more difficult.

 

[Agzy]

Hello.
Dad aged 81 is increasingly depressed from double incontinence. Bowel incontinence is less often. He gets frustrated and also angry. He doesn't believe its ok to expect someone to live with incontinence or that managing it with pull up pants and convenes is the answer. He feels nobody is really making any difference to his quality of life and also feels he is essentially being left to die like this. He doesn't want to die alone or with incontinence.

When he's down, he's really down. Refers to ending things, life not worth living, degrading etc etc and he says it with the lowest most depressing voice when like this. It's extremely sad to listen too. Sometimes he will leave me voice messages suggesting he's dying and he'll just die alone and uses a tone of voice as though to get at me, like its down to me to correct this. Like its somehow my fault. Dad has been diagnosed schizophrenia too (at age 75) but nobody knew about his dementia symptoms then as he lives alone and so i'm not convinced that diagnosis was correct but he does get very angry. I really tire of being made to feel this way just because he is and i've had the gp out to discuss anti-depressants and spoken with his mental health nurse. They've all spoken with dad about it but the outcome is that yes while he does feel really low during these episodes, he wouldn't actually take his own life and feels he copes well considering and so no anti depressants are prescribed. This just annoys me more. Why should i have to listen to such voice messages if nobody, including dad are going to do anything about it. What does sending me these worrying sometimes arrogant messages actually achieve? what is the aim here, apart from to make me feel responsible and worried. Its got to the point that I don't even feel worried, I just feel annoyed. I just think leave me alone!!!! ( I work, I'm a single parent to 3 teens who are testing me a lot right now to boot). and of course I'm 500 miles away. Please don't think i don't do much for dad. I do sooooo much daily. Technology has helped a great deal here. Its surprising how much can be done from so far. Practical stuff is done by carers and to be honest, even if i did live closer, i still wouldn't be doing practical toilet stuff with dad as that would feel very weird and wrong for me as father daughter relationship.

Anyway, as far as dad is concerned, the only thing that will help him is if' everyone starts working together' to 'stop' the incontinence, or at least manage it better. I don't know how anyone can manage it better? He's had many different brands of pull ups, pads, convenes etc. and had incontinence nurse out two or three times. He has 4 carer visits per day. I send automatic pop up screen reminders that show a big picture of a loo telling him to go try use the loo even if he doesn't need as this may avoid accidents/wet clothes. That pops up every 2 hrs throughout the day, everyday. Sometimes he leaves sarcastic voice messages about the reminder even though its always been there and we've discussed it and he's ok'd it with his approval. I don't want to patronise or offend dad so i always run things by him first as a suggestion.

As far as i'm aware, nothing will be offered surgically to dad for incontinence because of his age - plus the dementia. I may be wrong but everything i've read suggests that is the case. If I thought there was anything could be done surgically that could stop this for him, i'd book dad to have it done in a shot. even if it had to be private, but that would depend on cost. Has anyone had experience of more effective treatment for incontinence in some one this age (81)? I'd be keen to hear. sorry for the length.

I can relate to a lot you are going through although the refrain from my LO is always about when is it going to stop (the incontinence) and why does it happen etc. however, when reading your post I noticed you mentioned screen pop up notes, how do you do that and to what devices? I use Alexa to give reminders for the likes of meds but haven’t heard of screen use, thank you.

 

[SMBeach]

I dont think there is anything you can do.
'Just keep saying ''I'll look into it dad''

How did he get onwith convenes? Surely that solves one problem.
No Two's is more difficult.

He got on brilliantly with convenes.......... for a while. Then started pulling them off and becoming confused by how they worked. He tampered with them lots and started removing it and hanging it on the door when carers left. He was and can still be just as bad with pull ups. Thinking they don't work because they get wet or dirty. He leaves them on the floor dirty to let the carers and anyone he can get to look at them to prove what he's having to live with. He's even thrown a heavily soaking wet pair of pull ups, up to the ceiling and let them land hard pressure on the floor so they explode just to prove the point. He gets very angry about it.

 

[SMBeach]

I can relate to a lot you are going through although the refrain from my LO is always about when is it going to stop (the incontinence) and why does it happen etc. however, when reading your post I noticed you mentioned screen pop up notes, how do you do that and to what devices? I use Alexa to give reminders for the likes of meds but haven’t heard of screen use, thank you.

It's called Myhomehelper. If you google it, you should find the website. Its a subscription of £9.99 a month. It has a clock (digital and/or analogue) date, diary. I have everything thats happening that day on screen for dad so he knows who is visiting and when. What deliveries to expect. Where he's going that day (day centre), names of carers and times to expect them. Photos. i removed photos though as they caused as much distress as they did enjoyment. Reminders can make alert noises or have a voice speak out the reminder etc. I stopped the alert and never used the voice as dad used to hear voices so mine are silent visual reminders. Its been a god send to me due to distance and it sends any info/changes to his screen wiithin 90 seconds. You need wifi.

 

[canary]

Im so sorry that your dad is so upset about his incontinence. As far as I am aware, there is nothing that can be done, surgically or otherwise, even privately

He doesnt seem to understand about the pads, pull-ups etc. Does he understand that it is he himself that is making them dirty? Or does he think he is being forced to wear items that are already dirty?

 

[SMBeach]

Im so sorry that your dad is so upset about his incontinence. As far as I am aware, there is nothing that can be done, surgically or otherwise, even privately

He doesnt seem to understand about the pads, pull-ups etc. Does he understand that it is he himself that is making them dirty? Or does he think he is being forced to wear items that are already dirty?

I'm not entirely sure. His conversations can be quite confusing. He struggles sometimes to understand basic concept. ie: the purpose of the pull ups are to protect his clothes and shoes, floor, furniture etc and not to stop the incontinence. But he did say something about how could i expect him to wear these when they are covered in poo (he didn't use the word poo, he used unpleasant language). Occasionally he understands what i'm telling him but he always goes back to not understanding at all. But he did say something today which suggested he might be blaming others for it happening. I cant remember what he said but i remember having to say 'who do you think is doing this to you dad? nobody is making it happen to you' and i sense slight paranoia coming back.

 

[Palerider]

Hello.
Dad aged 81 is increasingly depressed from double incontinence. Bowel incontinence is less often. He gets frustrated and also angry. He doesn't believe its ok to expect someone to live with incontinence or that managing it with pull up pants and convenes is the answer. He feels nobody is really making any difference to his quality of life and also feels he is essentially being left to die like this. He doesn't want to die alone or with incontinence.

When he's down, he's really down. Refers to ending things, life not worth living, degrading etc etc and he says it with the lowest most depressing voice when like this. It's extremely sad to listen too. Sometimes he will leave me voice messages suggesting he's dying and he'll just die alone and uses a tone of voice as though to get at me, like its down to me to correct this. Like its somehow my fault. Dad has been diagnosed schizophrenia too (at age 75) but nobody knew about his dementia symptoms then as he lives alone and so i'm not convinced that diagnosis was correct but he does get very angry. I really tire of being made to feel this way just because he is and i've had the gp out to discuss anti-depressants and spoken with his mental health nurse. They've all spoken with dad about it but the outcome is that yes while he does feel really low during these episodes, he wouldn't actually take his own life and feels he copes well considering and so no anti depressants are prescribed. This just annoys me more. Why should i have to listen to such voice messages if nobody, including dad are going to do anything about it. What does sending me these worrying sometimes arrogant messages actually achieve? what is the aim here, apart from to make me feel responsible and worried. Its got to the point that I don't even feel worried, I just feel annoyed. I just think leave me alone!!!! ( I work, I'm a single parent to 3 teens who are testing me a lot right now to boot). and of course I'm 500 miles away. Please don't think i don't do much for dad. I do sooooo much daily. Technology has helped a great deal here. Its surprising how much can be done from so far. Practical stuff is done by carers and to be honest, even if i did live closer, i still wouldn't be doing practical toilet stuff with dad as that would feel very weird and wrong for me as father daughter relationship.

Anyway, as far as dad is concerned, the only thing that will help him is if' everyone starts working together' to 'stop' the incontinence, or at least manage it better. I don't know how anyone can manage it better? He's had many different brands of pull ups, pads, convenes etc. and had incontinence nurse out two or three times. He has 4 carer visits per day. I send automatic pop up screen reminders that show a big picture of a loo telling him to go try use the loo even if he doesn't need as this may avoid accidents/wet clothes. That pops up every 2 hrs throughout the day, everyday. Sometimes he leaves sarcastic voice messages about the reminder even though its always been there and we've discussed it and he's ok'd it with his approval. I don't want to patronise or offend dad so i always run things by him first as a suggestion.

As far as i'm aware, nothing will be offered surgically to dad for incontinence because of his age - plus the dementia. I may be wrong but everything i've read suggests that is the case. If I thought there was anything could be done surgically that could stop this for him, i'd book dad to have it done in a shot. even if it had to be private, but that would depend on cost. Has anyone had experience of more effective treatment for incontinence in some one this age (81)? I'd be keen to hear. sorry for the length.

Sadly I agree with others, there is nothing your dad can do to remedy this problem. The most important thing obviously is to clean up after an episode and see the GP for barrier creams etc. I don't know the full history around your dad but if this happening frequently then he clearly has an advancing dementia or if your prefer disease progression. There are two options here to be honest with you one is to carry on at home with the carer visits and self-help and the other is to think about 24/7 care that is appropriate to your dads needs as clearly this sounds as if it's a problem that is becoming more difficult to manage. Not only that if things get worse your dad might not address the issue and runs the risk of serious skin breakdown and infection which can be very unpleasant in terms of living with and possibly worse. Dementia I am afraid presents itself in different ways in different people, some attributes failing before others leaving difficult situations and some difficult decision making for family / NOK carers.

 

[SMBeach]

Sadly I agree with others, there is nothing your dad can do to remedy this problem. The most important thing obviously is to clean up after an episode and see the GP for barrier creams etc. I don't know the full history around your dad but if this happening frequently then he clearly has an advancing dementia or if your prefer disease progression. There are two options here to be honest with you one is to carry on at home with the carer visits and self-help and the other is to think about 24/7 care that is appropriate to your dads needs as clearly this sounds as if it's a problem that is becoming more difficult to manage. Not only that if things get worse your dad might not address the issue and runs the risk of serious skin breakdown and infection which can be very unpleasant in terms of living with and possibly worse. Dementia I am afraid presents itself in different ways in different people, some attributes failing before others leaving difficult situations and some difficult decision making for family / NOK carers.

oh we are looking to go into a carehome asap. Care needs assessment done and im just completing financial info for dad. Dad wants to go into a care home as he senses he is on his way out. This has gone on far too long now. s his only family and being 500 miles away, dad does need 24 hr care and it would i think rest his mind. or not....... It would rest mine for sure.

 

[leny connery]

I'm not entirely sure. His conversations can be quite confusing. He struggles sometimes to understand basic concept. ie: the purpose of the pull ups are to protect his clothes and shoes, floor, furniture etc and not to stop the incontinence. But he did say something about how could i expect him to wear these when they are covered in poo (he didn't use the word poo, he used unpleasant language). Occasionally he understands what i'm telling him but he always goes back to not understanding at all. But he did say something today which suggested he might be blaming others for it happening. I cant remember what he said but i remember having to say 'who do you think is doing this to you dad? nobody is making it happen to you' and i sense slight paranoia coming back

 

[leny connery]

no words can be used to make them 'understand'. there is no logic, no cognition, no cohesion. mine sees me as his dead mum, I asked 'you know she is dead, right?' Yes, he said. and tells me the whole mass and funeral things. so, I ask, 'who am I?' he replies 'you are my mum'. It gets worse. He then looks for me, gets angry because I go out somewhere without telling him. upset. worry. it is heartbreaking to watch, but I cannot make him see me. if I try too hard he gets really upset.

 

[Agzy]

It's called Myhomehelper. If you google it, you should find the website. Its a subscription of £9.99 a month. It has a clock (digital and/or analogue) date, diary. I have everything thats happening that day on screen for dad so he knows who is visiting and when. What deliveries to expect. Where he's going that day (day centre), names of carers and times to expect them. Photos. i removed photos though as they caused as much distress as they did enjoyment. Reminders can make alert noises or have a voice speak out the reminder etc. I stopped the alert and never used the voice as dad used to hear voices so mine are silent visual reminders. Its been a god send to me due to distance and it sends any info/changes to his screen wiithin 90 seconds. You need wifi.

Thank you I will check it out 👍

 

[Bunpoots]

I completely understand your frustration @SMBeach having been through very similar with my dad who could not understand that it was he who was causing the wet patches on the carpets, chairs, sofa, bed… although it did make me laugh when he insisted a man with a watering can had walked through the living room and watered the carpet!

I didn’t get the temper tantrums from dad but he could get quite angry if I suggested he might be wetting so I had to be careful what I said to him.

I can tell you that moving to a carehome sorted out most of his incontinence problems. The carers made sure that all the residents were encouraged to go to the toilet regularly which meant that my dad was mostly dry during the day. He was looked after very well there and became much calmer. I hope a move to a carehome can happen soon and do the same for your dad.

 

[SMBeach]

I completely understand your frustration @SMBeach having been through very similar with my dad who could not understand that it was he who was causing the wet patches on the carpets, chairs, sofa, bed… although it did make me laugh when he insisted a man with a watering can had walked through the living room and watered the carpet!

I didn’t get the temper tantrums from dad but he could get quite angry if I suggested he might be wetting so I had to be careful what I said to him.

I can tell you that moving to a carehome sorted out most of his incontinence problems. The carers made sure that all the residents were encouraged to go to the toilet regularly which meant that my dad was mostly dry during the day. He was looked after very well there and became much calmer. I hope a move to a carehome can happen soon and do the same for your dad.

Thank you. The assessment is fine. I’ve sent in financial info so hopefully it will be finalised soon and I can get on waiting lists. Dad actually said he hardly even thinks about his incontinence when at the day centre and I believe it’s because he has other things to focus on and enjoying company. So I’m hoping the care home will do that for dad too.