Faecal Incontinence

[Diannie]

Hi Tin and Silkiiest. I have made a request via the district nurse to be referred to the continence clinic. She said I wouldn’t be eligible for help yet

because I need to be using in excess of 8 pads a day, which we are not at the moment. It’s because we are not on benefits that I can’t get financial help. We had a financial assessment and were told that as we have no mortgage and my husband has a private (although modest) pension that makes us self funding

I take your point re diet. I try to keep him to a plain bland diet. Strangely last week I made a stew with slow cooked beef and that seemed to set things off quite badly. I ask him what he has for lunch at the day centre but he’s not able to tell me. I could ask them but apparently they give everyone the choice. Though the menu looks suitable. I think it’s the progression of the Alzheimer’s. I did manage to speak to an Admiral nurse on their helpline. Her advice was that it was unlikely it would improve and not worry I would get used to it. She said lots of people say if it comes to incontinence issues that would be their breaking point but they manage to cope when it comes to it. Oh well. I really appreciate everyone’s help here. It’s very reassuring that any worries I have someone will always reply. That’s very reassuring. Thank you

 

[Philbo]

Hi Tin and Silkiiest. I have made a request via the district nurse to be referred to the continence clinic. She said I wouldn’t be eligible for help yet

because I need to be using in excess of 8 pads a day, which we are not at the moment. It’s because we are not on benefits that I can’t get financial help. We had a financial assessment and were told that as we have no mortgage and my husband has a private (although modest) pension that makes us self funding

Hi Diannie

The provision of pads/pull-ups should not be means-tested but it is certainly a post-code lottery. Many areas don't seem to supply pull-ups but in East Kent they do (though they initially said they didn't - I had to push). All I had to do was to keep a rough log of how many times my wife needed a wee (not easy, given I didn't always know until after the event) and her fluid intake. They now provide enough for 4 changes a day. The Kylie-type bed pads I buy myself.

We are self-funding, so I pay £40 a month for a weekly 3-hour "activity morning" and £34 for her to attend a day care centre (9:30 to 15:30) one day a week, run by the LA.

Regards
Phil

 

[Diannie]

Hi Diannie

The provision of pads/pull-ups should not be means-tested but it is certainly a post-code lottery. Many areas don't seem to supply pull-ups but in East Kent they do (though they initially said they didn't - I had to push). All I had to do was to keep a rough log of how many times my wife needed a wee (not easy, given I didn't always know until after the event) and her fluid intake. They now provide enough for 4 changes a day. The Kylie-type bed pads I buy myself.

We are self-funding, so I pay £40 a month for a weekly 3-hour "activity morning" and £34 for her to attend a day care centre (9:30 to 15:30) one day a week, run by the LA.

Regards
Phil

Hi Phil. Thank you for your reply. It is difficult to guess. Sometimes he wants me to help with toiletting etc. Other times not. Our day centre picks him up at about 9.15 and brings him back around 4pm on a Monday and Thursday. That is £45 per day

Fridays they pick him up same time but I collect him at 2pm. That is £25.

 

[lambchop]

Hi Diannie,

I think that if, at the moment, you have no choice but to buy pads etc, all you can do is look for the cheapest supplier. Did the Admirality Nurse on the phone, suggest anything re funding for pads or could you call them again?

Regarding diet, unless there is an easy way to find out what he is eating when you aren't around, (which would involve the day centre staff keeping a log), and implementing any changes, I wouldn't worry about this - it can be hard enough to get a PWD to eat and drink, let alone restrict their diet, especially when the dementia gets worse.

You have done incredibly well, not only to cope, but to chase up all these agencies. Not much comfort though, I'm sure. All I can say is be as prepared as you can be regarding help and resources. Again, something that the Admiralty nurse may be able to help you with.

Know that you are incredibly strong and courageous.

 

[Diannie]

Hi Diannie,

I think that if, at the moment, you have no choice but to buy pads etc, all you can do is look for the cheapest supplier. Did the Admirality Nurse on the phone, suggest anything re funding for pads or could you call them again?

Regarding diet, unless there is an easy way to find out what he is eating when you aren't around, (which would involve the day centre staff keeping a log), and implementing any changes, I wouldn't worry about this - it can be hard enough to get a PWD to eat and drink, let alone restrict their diet, especially when the dementia gets worse.

You have done incredibly well, not only to cope, but to chase up all these agencies. Not much comfort though, I'm sure. All I can say is be as prepared as you can be regarding help and resources. Again, something that the Admiralty nurse may be able to help you with.

Know that you are incredibly strong and courageous.

Hi Lambchop. I have found Boots own range of Staydry pull-ups to be reasonably priced so have gone for these. Thank you for your kind words

 

[lambchop]

I'm glad you have found something suitable which I hope your husband keeps on most of the time - harder to remove than pads I hope! There are cheaper suppliers online but you must be exhausted and getting these items from the high street may be easier than browsing the net. It is a huge responsibility to deal with EVERYTHING.

I hope you are able to sleep at nights.

Keep posting.

 

[Philbo]

I must have been tempting fate when I posted yesterday, as not long after, I realised my wife was acting a bit fidgety downstairs (the house, not on the person). This normally indicates that she needs the loo, though I had taken her about an hour before.

Once in the toilet, I helped her with her trousers and pull-ups only to find that he had done a bit more than a wee (sorry if your reading this at breakfast time).

Well! Needless to say, it took me by surprise, as she has only done this twice before - both times around 18 months ago. So I spent quite some time cleaning up and had to bring forward her weekly shower/hair wash.

I just hope that it's another "one-off". Been okay since but it is early.

Phil

 

[Diannie]

I must have been tempting fate when I posted yesterday, as not long after, I realised my wife was acting a bit fidgety downstairs (the house, not on the person). This normally indicates that she needs the loo, though I had taken her about an hour before.

Once in the toilet, I helped her with her trousers and pull-ups only to find that he had done a bit more than a wee (sorry if your reading this at breakfast time).

Well! Needless to say, it took me by surprise, as she has only done this twice before - both times around 18 months ago. So I spent quite some time cleaning up and had to bring forward her weekly shower/hair wash.

I just hope that it's another "one-off". Been okay since but it is early.

Phil

 

[Diannie]

Hi Philbo. I hope so. The community dementia nurse came this afternoon and thinks this incontinence may be caused by the Rivastigmine patches my husband takes with Memantine. As he has progressed to the severe stage of the disease she thinks the Rivastigmine has stopped benefitting him but is stimulating the body with the negative side effects and suggested stopping them straight away. She will phone next week to see if there is any improvement. Apparently Memantine is the only medication to help towards the final stages and is usually better tolerated with minimal side effects. What medication is your wife on?

 

[Philbo]

Hi Philbo. I hope so. The community dementia nurse came this afternoon and thinks this incontinence may be caused by the Rivastigmine patches my husband takes with Memantine. As he has progressed to the severe stage of the disease she thinks the Rivastigmine has stopped benefitting him but is stimulating the body with the negative side effects and suggested stopping them straight away. She will phone next week to see if there is any improvement. Apparently Memantine is the only medication to help towards the final stages and is usually better tolerated with minimal side effects. What medication is your wife on?

My wife only takes 5mg of Donepezil. Though she has FTD the memory clinic suggested it may help, when originally diagnosed. Licenced for AZ they often offer to others and initially, it seemed to help with her deteriorating speech.

Not so sure it helps now (4 years on) but reluctant to stop in case it has a detrimental effect? They did try 10mg after a while but no real difference so stuck with 5mg.

Phil

 

[Diannie]

My wife only takes 5mg of Donepezil. Though she has FTD the memory clinic suggested it may help, when originally diagnosed. Licenced for AZ they often offer to others and initially, it seemed to help with her deteriorating speech.

Not so sure it helps now (4 years on) but reluctant to stop in case it has a detrimental effect? They did try 10mg after a while but no real difference so stuck with 5mg.

Phil

Hi Phil. My husband started on Donepezil and took it for 3 years. After that time the Consultant felt they weren’t benefitting any more so changed to Rivastigmine capsules. The first couple of weeks he suffered severe vomiting then it settled down. He tolerated this better than the Donepezil. After just over a year on he started having trouble swallowing them so changed to the patches. He did really well on these. So the Doctor decided to add Memantine. He was ok for a couple of months when this incontinence started. However since I started these posts the Community Dementia nurse has been out and thinks it’s the Rivastigmine causing the problem and suggested leaving them off initially for a week and she will ring to see how things are. I don’t want to speak too soon but after a couple of days of stopping these meds he is not having any diarrhoea but is going to the loo normally. I asked her if we should wean him off gradually. But she said no they only stay in the system for 24 hours. I will keep you posted and see whether it continues to improve