Mum in care home refusing personal care

[Inny]

My elderly mum who has very long standing anxiety, depression and OCD and is now in a care home, has recently become urine incontinent. She is now refusing to be washed or changed when she has wet herself. The care home tell me they cannot force her to do anything, resulting in her sitting/lying in urine for up to 10 hours. The senior nurse tells me she regards mum as having capacity and so their hands are tied and that the issue of capacity is very difficult to determine. I'm at a loss what to do (it's been quite a journey with mum since dad died) as she is obviously self-neglecting and at risk of skin breakdown, infection, pressure sores and worse. To me, this is a safe guarding issue. Please could someone advise me who to turn to ...GP/social worker/care home manager? Any advice is appreciated, thank you.

[Melly1]

Hi Inny,
I don't have experience of caring for an elderly relative, others will be along who have. Just wanted to ask if she has started to wear incontinence products yet? Of course they will need changing, but they do keep the moisture away from the skin until they are sodden. I work with children with special need, some of whom wear pads. Unless they o/b their pads only need changing once during the school day, (their parents are provided with four pads to use in a 24 hour period.) The pads DP protect the skin.

Melly1

[Inny]

Hi Melly1,
Sorry I should have explained, yes I have got mum branded incontinence pads thanks - the problem arises when this leaks and her clothing/ bedding/ chair become wet. I have made further progress today, I spoke to a helpful senior nurse at the home who said I need to arrange a 'meeting of best interests' for mum, with social worker and gp and possibly look into a 'deprivation of liberties safeguarding' (I may not have the term completely correct). I think establishing capacity may be involved somewhere along the line. It has been an upward learning curve for me but I think I am getting on the right track. Thank you again.

[Melly1]

Glad you are making progress, Inny.

Melly1

[jenny lucas]

The issue of capacity is always tricky, but when it comes to personal hygiene in a way I would think (totally personally!) that it becomes almost 'self-proving'....ie, if someone has reached the stage where they are prepared to sit in their own urine, it's de facto evidence they don't have capacity any more!

I think the DOLS (Deprivation of Liberty) does, sadly, sound as if its necessary. My MIL with dementia has that alas (also doubly incontinent, but fortunately very 'peaceable' thankfully).

Hope things improve for you mum in that respect, ie, that the hygiene issue is sorted. Care homes tread a tricky path alas.

[Inny]

Hi Jenny,

Thank you very much for posting. Unfortunately it looks like you are right. The GP came to see mum yesterday and asked her capacity questions including did she understand what could happen if she didn't wash. Of course she knew the answer off pat because I have repeatedly explained to her the potential consequences of leaving urine in contact with the skin (ie. skin breakdown-> pressure sores->infection-> septicaemia-> life threatening situation). He concluded mum has capacity.
I'm not sure where that leaves anyone - I am waiting to hear from the social worker as I think the meeting of best interests will still go ahead. Of course now I'm wondering whether I should have left mum in her flat (where she had become a recluse, never venturing out) with me going in to do her showering and personal care but she was not incontinent then so I could manage it. Also in the home she is now for the first time engaging with others and taking on a more 'normal' life. I thought I was doing the best for her- I didn't think for a minute we'd be where we are now. And of course the costs involved of being in a home leave me speechless but worth it if she is being cared for.

[bowlingbun]

You have done absolutely the RIGHT thing - because mum sounds like she is sliding very quickly down the slippery slope of dementia or similar. She is highly unlikely to ever be well enough to go home. Is It her own flat? Can I ask if it is a nursing home that deals with elderly mentally infirm? If mum got worse, would they be able to cope with her right until the end of her life?
Has mum had a formal "Financial Assessment" from Social Services before any charges were agreed or paid? All charges should be paid for by mum (NOT you!).
Do you have Power of Attorney? Are you the DWP "Appointee"?

[Dancedintherain]

Hello Inny. I understand your concern. Just want to remind you that these issues are very common......and whilst changes may take time to adjust most good care homes have the experience to gently ease the changes our carees need.
Think about it. Without wishing to be rude or crude..... I still get a bit freaky when I am due to have a cervical screening test....the whole exposing oneself in intimate ways is difficult for ANY of us. Sometimes ya know, things do get sorted. I am sure the Care home manager(s) also want what is best for her. I do know how hard it is to be patient and how stressed you naturally feel. Do update us in due course. And I highly recommend you speak to the Care home manger(S) about your concerns. Nuffink will be new to them!
My daughter uses a phrase I find helpful in many situations. "Everything will be OK in the end. IF it's not OK....it's not the end".

[Inny]

Hello Dancedintherain and bowlingbun,

Thank you - it does help knowing that this situation is not uncommon!
Yes mum is in a residential/nursing home; I do have POA and she has had a financial assessment.

I feel sad thinking of mum lying wet in her bed or chair for hours on end through her own choice with carers around her, when I know that in her clear mental state she would never have allowed that, especially with her history of OCD. I can see the carers are doing their best in a 'hands tied' situation. It is early days, she has been there only 7 weeks and I guess her needs are evolving.

Thank you again. I will update in due course.

[jenny lucas]

I think Danced might be right about the 'intimate care' business.

My MIL with pretty advanced dementia is now incontinent, and recently when I went to take her out for a drive, the staff said they had better change her in to fresh pull ups. I was in the bedroom and I was curious to see how she 'put up with it'. In fact, she put up with it very well - I don't think she really was aware of what they were doing, ie, that they were doing anything other than 'dressing' her. The staff just pulled down her trousers (elastic waist), and the pull ups, she had quite a long top on, so I couldn't 'see anything' and then I think they just gave her a very quick sort of 'mop' and then got her to step into a new pair of pull ups, and then her trousers again. She was very 'docile' about it, and just stood there, holding on to the chair, while they did it, very quickly, in a handful of minutes. I found it quite reassuring. I don't know what I was expecting - sort of maybe like a giant 'baby change' on the bed, or something!

I think when they shower her they just probably 'mop' a bit between her legs? That said, I guess I haven't witnessed a 'full' change, ie, from poo (sorry!), not just wee.

It's all desperately, desperately sad....

I know why you are saying 'I should take her home' but even without alas BB's very unarguable point that EVEN IF you could manage a bit longer with her yourself, the point is swiftly arriving when she MUST have more care and residential 24x7 care, I can also say that there was another forum member here who looked after her mum at home and was in despair that her mother would INSIST on continuing to sit in her chair, soaking wet, and refused to let her change her......so I suspect that that might be true of your mum as well??

I was wondering whether, when you visit, YOU could 'do the change' and see if she is 'better' with you, or not?

But I can't help thinking that being prepared to sit 'wet' etc, HAS to be a sign of mental decay (it really isn't rational behaviour!) and it doesn't really matter if she 'understands' (??) that it can lead to all the skin problems etc, she simply doesn't pay attention to that or believe it will happen. (After all, we can be told over and over again that snacking will lead to obesity....but we still do it!) (My point is that if she PREFERS to 'sit wet' than 'get changed' THAT is what is important to her - not some future health problem caused by sore skin!).

(Another possibility of her reluctance is the 'inertia' that can overcome the elderly. EVERYTHING becomes a huge effort, including letting someone take you off somewhere to change you! After all, again, even with ourselves, how many of us continue to watch the TV knowing we are 'desperate' for the loo, but we dont' want to leave the programme just then)(well, I know I do!)

I really would urge for you to let the situation 'ride' for a while, and see if things improve over the next few weeks, as she gets increasingly used to being in residential care. It's upsetting, I know, but as others are saying, it does seem to be a very common problem alas.