My husband age 58 is in a care home as I found it extremely difficult to look after him as the AD/FTD progressed. He is now causing big problems for the home as he plays with his faeces, smearing it and throwing it about and urinates wherever he is at the time. The staff try to get him to go in the toilet but are finding it really difficult. I find it heartbreaking when I hear what he is doing. Today he managed to throw some faeces in the kitchen and this has upset the chef. My husband can't communicate and is aggressive some of the time. The home manager feels she has to tell me so I know what they have to deal with. I think she likes to do this as the council haven't paid her the rate she feels is needed to care for him - hate this system of everyone haggling over somebodies care!!It's totally wrong! Fill desperate and wish that I could end his life as there is no point in him living in this state and he would definitely not have wanted to live like this.
Care home issue - faeces/poo urinating everywhere
- Thread starter merlot
- Start date
That really is heartbreaking, Merlot. What a horrible, horrible thing, and your husband is so young, too. I completely understand your wish to end his life.
Have the care home staff checked for any infections? Have they tried pull-up incontinence pads on him? Have they checked whether he suffers from constipation, diarrhoea or overflow? Whatever is ailing him clearly distresses him but a good care home with the help of a doctor would get to the bottom of this instead of moaning to you how much of a problem it is. It's their job to deal with difficult people who can't help their disease but deserve compassion and help when they are clearly in distress. Instead they are distressing you as well. Tell them to get a doctor out to check him over.
I would agree with you that the care home should be doing something rather than moaning, but essentially many ordinary care homes are just not geared up to deal with this sort of behaviour, in terms of both number of staff and the skills involved.
My father's dementia care home was pretty good, but when he started urinating inappropriately and faecal smearing, (plus aggression towards other residents) they could no longer cope. To be fair, care homes have other residents and staff to consider, and essentially this level of behaviour is beyond their scope.
(Incidentally, he was self-funding, Merlot, so I don't think your husband's care home should be 'blaming' the LA for not paying enough - and anyway LA funding is always less than the self-funder rate.)
My father is now in an NHS Dementia Unit, with specialist mental health nurses and a ratio of 1 to 3, funded by CHC, and this is what I think Merlot should push for. From her brief description, her husband is similar to my father who scored 'Severe' for Behaviour and Cognition, and was also unable to communicate.
Although my father does require 2-3 nurses/carers for personal care due to his aggression, the faecal smearing does not seem to be an issue now, mainly because of the skilled staff and their ability to pre-empt such behaviour. Just having more staff means that patients are changed more frequently and are not left soiled for too long anyway. Also, almost all the patients wear trackpants with ties and/or belt secured tightly round the back so that they are unable to pull them down. This and other practical measures - such as having lots of tactile 'toys' available to satisfy the urge to fiddle with something - make a big difference.
Merlot - these ideas might be worth a try, but if I were you, I would push for a CHC assessment with the aim of getting your husband into a more appropriate level environment to cope with his needs.
I agree with both Beate and Katek, Ask for CHC funding and complete the forms using worst case scenarios, the care home should be able to help you or your husbands mental health nurse. Do get the care home to check for constipation etc. as well, if they are good they will have already checked and monitored him.
I feel for you, and your husband.
He may be entitled to incontinence products on the NHS. Look up the NHS website for the part of the UK that you live in for guidance about what to do.
As Merlot's OH is in a CH he will be provided with the products already.
Merlot, I'm so sorry to read of your OH's problems-at such a young age it's terrible to see and hear about.
My OH was like your Husband-faeces everywhere; bedding, himself and curtains.
Pete was also in an ordinary CH but there was a ratio of carers 1 to every three residents. They had coping mechanism's which seemed to help a bit. Any sign of fiddling he was changed. After 6 months of being in care Pete was awarded CHC and the CH were provided with 4 hours extra per day of 1 to 1 for Pete. I have to say though I think that Pete's CH appeared to be exceptional; they seemed to deal with everything and kept exceptional records which helped with his CHC funding.
I think you should ask the CH manager to get the ball rolling as regards to applying for CHC funding. Extra help could be forthcoming if he gets it.
Love
Lyn T XX
Merlot, I'm so sorry to read of your OH's problems-at such a young age it's terrible to see and hear about.
My OH was like your Husband-faeces everywhere; bedding, himself and curtains.
Pete was also in an ordinary CH but there was a ratio of carers 1 to every three residents. They had coping mechanism's which seemed to help a bit. Any sign of fiddling he was changed. After 6 months of being in care Pete was awarded CHC and the CH were provided with 4 hours extra per day of 1 to 1 for Pete. I have to say though I think that Pete's CH appeared to be exceptional; they seemed to deal with everything and kept exceptional records which helped with his CHC funding.
I think you should ask the CH manager to get the ball rolling as regards to applying for CHC funding. Extra help could be forthcoming if he gets it.
Love
Lyn T XX
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Hi Merlot I have just been to visit my OH in his care home and he is doing exactly the same thing I don't know what the solution is in some ways I wish they hadn't told me.
I agree it is heartbreaking I hate this B!!!!! disease it just tears you apart sending you hugs
Thank you!
Thank you all for your comments and advice. They have made me feel a bit better about the situation. It helps to know other people have had the same problem. The home is applying for CHC funding but I guess that will take a while. He has been smearing for a long time now so it isn't to do with constipation etc. I think if there was a higher staff ratio then that would help so the CHC funding is the way to go for now I guess. I was talking to one of the care workers today who said he could tell when my husband needed to go so I guess if the ratio improved that would help. He does walk up and down the corridors so it is difficult to keep and eye on him all the time. There is also a relatives meeting this week so that could be useful.
Thank you all for your comments and advice. They have made me feel a bit better about the situation. It helps to know other people have had the same problem. The home is applying for CHC funding but I guess that will take a while. He has been smearing for a long time now so it isn't to do with constipation etc. I think if there was a higher staff ratio then that would help so the CHC funding is the way to go for now I guess. I was talking to one of the care workers today who said he could tell when my husband needed to go so I guess if the ratio improved that would help. He does walk up and down the corridors so it is difficult to keep and eye on him all the time. There is also a relatives meeting this week so that could be useful.
I have recently moved my dad from his care home to a nursing home for the same reason. It's absolutely heartbreaking hearing about this and distressing as well. I'm not sure things will be any better here but time will tell. Keep your chin up x
The bit that got me was that he was in the kitchen. The kitchen? How? In OHs home the kitchens are through a locked door. Or is you man in an unlocked unit? Or do you mean an area where the staff make drinks for the patients?
Then the care home he is in is not the right place for him. He needs reassessing and placing in a nursing home where he can be looked after properly. Meds may be altered as well. IMHO
Then the care home he is in is not the right place for him. He needs reassessing and placing in a nursing home where he can be looked after properly. Meds may be altered as well. IMHO
Thank you spamar. I thought that too, but no-one else mentioned it and I thought it was just me.
Mum is in a dementia unit and none of the residents can go anywhere near where any food/drink is being prepared - it is all locked as it is dangerous (on all levels) for them to be there. It really doesnt sound a suitable place for him and I wonder if the staff are trained to deal with such changing behaviour?
Hmm, doesn't sound like it. I'm surprised the home hasn't suggested reassessment.
OH is in a 'care centre' where they cope with people with early dementia plus, separately, those with advanced dementia ( where OH is). But that bit is a locked unit. Easier to get in than out! He has gone downhill a lot since being there ( and also in the 2-3 weeks before) but they have coped OK. I think this is partly where he is, cessation of his tablets and general downturn of this horrible disease.
Even though he's in a home and I do very little for him, except the occasional feed, I still don't find it easy, always looking out for him! He can't walk now, needs two people to move him, so I couldn't manage at home by myself. That's the one thing that comforts me, I really couldn't do it by myself, even if I was fit.
Sorry for wittering on!
S
OH is in a 'care centre' where they cope with people with early dementia plus, separately, those with advanced dementia ( where OH is). But that bit is a locked unit. Easier to get in than out! He has gone downhill a lot since being there ( and also in the 2-3 weeks before) but they have coped OK. I think this is partly where he is, cessation of his tablets and general downturn of this horrible disease.
Even though he's in a home and I do very little for him, except the occasional feed, I still don't find it easy, always looking out for him! He can't walk now, needs two people to move him, so I couldn't manage at home by myself. That's the one thing that comforts me, I really couldn't do it by myself, even if I was fit.
Sorry for wittering on!
S
No need to apologise in the slightest. You are still adjusting. Mum is not so far down the line, but she is "frailing" (love that word).
Autumn Girl
Hi Merlot
Having had a consultant's assessment my husband who has early onset dementia has been referred to a dementia care home (with specialist nursing) run by the NHS. The behaviour of my husband is seen as 'challenging' to most as it would require 2/3 to change him. He is 'dementia' blind and has no understanding of the functioning of a toilet. He now wears incontinence aids provided by the care home but he tends not to ignore them and spends most of his time fiddling with his zip. There is a very high ratio of nursing and auxilliary staff and I am grateful that he has this support. He is young as well. Putting his belt on back to front sometimes helps and when walking him in their garden it helps if he is wearing an apron or tabard which provides modesty for him. I feel so upset for him as I know a lot of the time he just doesn't know what is wrong - why he feels so agitated - and I know that he needs to do the toilet. What a disease........
Hi Merlot
Having had a consultant's assessment my husband who has early onset dementia has been referred to a dementia care home (with specialist nursing) run by the NHS. The behaviour of my husband is seen as 'challenging' to most as it would require 2/3 to change him. He is 'dementia' blind and has no understanding of the functioning of a toilet. He now wears incontinence aids provided by the care home but he tends not to ignore them and spends most of his time fiddling with his zip. There is a very high ratio of nursing and auxilliary staff and I am grateful that he has this support. He is young as well. Putting his belt on back to front sometimes helps and when walking him in their garden it helps if he is wearing an apron or tabard which provides modesty for him. I feel so upset for him as I know a lot of the time he just doesn't know what is wrong - why he feels so agitated - and I know that he needs to do the toilet. What a disease........
Hi Autumn girl
So sorry to hear about your husband. My father is very similar and is also in an NHS unit which is brilliant. The high ratio of well qualified, skilled and understanding staff make such a difference compared to the care home where he was self-funding before they could no longer cope with his faecal smearing etc.
Re the problem with fiddling with the flies on trousers - in an earlier post on this thread I mentioned that at the unit where my father is now, the men likely to fiddle with their pads wear track pants rather than conventional trousers. These are then tied round the back, with maybe also a belt fastened at the back too. The absence of a zip seems to make so much difference and might be worth trying with your husband. There is also a variety of tactile 'toys' available for when they have the urge to fiddle with something. And I agree .... the worst disease imaginable.
Hello can anyone recommend good nhs units that manage this type of behaviour? Our father is struggling and would be great to have insight into where others have sought support for their loved ones
I’ve never heard of any NHS facility specifically for the management of dementia patients with difficult incontinence. I would certainly like to know if there is one near to me because we‘ve been to Hell and back with my parents in managing their bladders and bowels.
We have had defecation in jacket pockets, the bed, the kitchen sink, the linen basket, and faecal smearing aplenty, but got literally zero help with it in or outside of a facility. We had to devise ways ourselves of dealing with the problem. Even now, my bedbound father has a four times a day bowel habit. If we mention this to the GP or district nurses, they’re powerless to help us, beyond suggesting a blood test to rule out an infection. This of course has been well and truly ruled out.
The NHS dementia unit providing CHC funded care that Katek mentions in her post 8 years ago is simply a fantasy for the likes of us. Maybe times have changed or maybe we’re just unlucky. I don’t know.
I wish you better luck than we’ve had, Mimimegusta.
