Newly incontinent Mum, some questions for those who have experience

sueorbell

Registered User
Mar 15, 2010
92
California, USA
Mum has recently become double incontinent. She has been in an EMI Nursing Home for 4 years, and is still walking.
Do nursing homes provide pads, and only pads? Are the pads included in care home fees? Can we request a meeting with an incontinence specialist even though Mum is in care? This would be mainly so I can learn a bit more about incontinence and how to best manage it? If I want to provide pull up pants for Mum, do we have to pay, or can we get some through National Health Service. BTW Mum is self funding.

Lots of questions, sorry. Any advice truly appreciated. Sue
 

nitram

Registered User
Apr 6, 2011
19,707
North Manchester
A referral has to be made to the Continence Service, a nurse will then assess your mother and a supply of pads/pull ups will be made to the Nursing Home, I would expect the home to initiate this.
The supply is most likely to be pads and insufficient.
I would initially ask the home for advice.
 

Jessbow

Registered User
Mar 1, 2013
2,952
West Hertfordshire
I wonder if, already in a residential setting, that there would be a formal discussion?

In my experience ( but its only my experience) Pads were kept en mass and used as needs by residents. I dont think people had their own suppy as such.

Large cupboard full of large ,medium and small, all pads, no pull ups there were applied to appropriate sized backside!

We didnt have to pay any extra
 

nitram

Registered User
Apr 6, 2011
19,707
North Manchester
In my wife's case the pads were also kept en masse in piles of the different types/sizes but the supply came monthly as a separate allocation for each resident, it was an enormous delivery.
 

Hair Twiddler

Registered User
Aug 14, 2012
892
Middle England
On a bit of a tangent.... mum lives here with us ... incontinence is the one element of dementia that really, really would/will be the straw that breaks this back. I could not bear dealing with it on my own ( mum will not agree to any outside help) mum will have to live in a care home...I just could not face it.
 

sueorbell

Registered User
Mar 15, 2010
92
California, USA
Thank you all for your replies. If Mum was't already in a home, incontinence would be the last straw for me too, I quite understand.
I will see if I can talk to an incontinence expert, independent of the home, just so I can be more knowledgable. However from reading your posts this may not be possible, so I'm prepared for that.
Do you know if NHS generally are prepared to provide any pull ups (in your experience). Thanks again. Sue
 

nitram

Registered User
Apr 6, 2011
19,707
North Manchester
In my area the NHS only provide pull ups if the person can go to the toilet unaided, the argument is that this provision helps to promote independence.
 

janemit

Registered User
Sep 7, 2014
30
For my mum she was already incontinent on admission but had refused to be assessed. We bought the pull up tena pads and have continued since her admission. She was eventually assessed as being incontinent but home said pads supplied were inferior quality so we continue to buy the pads.
When the person is mobile it is much nicer to have pull ups as the sticky ones are hardfor them to use.
 

sueorbell

Registered User
Mar 15, 2010
92
California, USA
This just shows how little I know, what are the sticky pads? Are they like sanitary towels and just stick to the panties in the same way? Sue
 

sueorbell

Registered User
Mar 15, 2010
92
California, USA
Thanks, that sounds hard to manage, I'll look them up. Who knew this was all so complex, just like everything else when you are dealing with Alz/Dem, I know. But it still catches me by surprise. Sue
 

Beate

Registered User
May 21, 2014
11,839
London
In my area the NHS only provide pull ups if the person can go to the toilet unaided, the argument is that this provision helps to promote independence.
Oh thanks, I will use this argument in my fight for more pull-ups! We are only allowed two a day as they are considered "cosmetic"!
 

grobertson62

Registered User
Mar 7, 2011
581
Sheffield
Hi
My dad wore pullups. We bought our own from supermarkets due to the pads provided being useless.
When he went into a nursinghome they had an incontinance team come to assess him
They agreed it was the best product so he got them provided free
The home had a few people using them. You do need to push for them
It didnt matter if he could go to the loo unaided or not
Good luck
 

Miss Polly

Registered User
Feb 12, 2014
66
What help one receives when someone becomes incontinent seems to differ depending on where you live, as everything to do with this horrible illness. I contacted the doctor in September about Mum's incontinence. We were referred to the Bowel and Bladder Department of the local hospital and given a date in February! I spoke to the social worker and she said ring them and ask for some supplies in the meantime. I did this and was given a cancellation in November, but no supplies. I took Mum to the appointment. It was truly awful. They gave her an internal examination (she's 88) and asked lots of questions, which she couldn't answer and I felt awful answering in front of her. There were two nursers, one in training and one senior. They seemed to be more worried about how the training was going than anything else. They said they wanted to try and "solve" the problem. They said Mum was constipated and to change her diet. I said it was very difficult to get her to eat anything so I tended to give her what she asked for. They also said she wasn't drinking enough and I said it was very difficult to get her to drink anything. Their next suggestion was absurd. They said a walk around the block each day would be beneficial. I had brought Mum in in a wheelchair because she can hardly walk. They must have guessed from the look on my face what I thought of this. They amended their suggestion to a walk around the sofa. The living room isn't big enough to "walk" around the sofa. Again, we weren't given any supplies. Instead we were given another appointment in February.

Since then Mum has become doubly incontinent and cannot stand without assistance, making it very difficult to change her. I have had to admit defeat and get carers to come in morning and evening to change her. I still change her the rest of the time. The carers do a wonderful job. But... Mum sometimes refuses to allow them or me to come near her, even when she is soaked in urine and worse. It was so bad the other day that I rang the emergency social worker to ask what I should do. I couldn't just leave her like that. She suggested I rang the doctor. The doctor said she would come out tomorrow. I needed help right then. I contemplated ringing an ambulance to come and take her away. I didn't because I didn't want to deny someone who really needed an ambulance to miss out.

So, this morning the carer came and we both spent 30 mins trying to persuade Mum to let us change her. No deal. Mum should have been going to daycare. The carer, bless her, came back after her next client to try again. Mum was very abusive to both of us. I have absolutely no idea what to do. I seem to spend a lot of time in tears at the moment. I have asked the social worker to find a placement for Mum because I can't deal with this any more. The house stinks to high heaven and my daughter and son (home from uni) have to put up with this. I feel very alone and just want someone to take her away. Sorry to be like this but I'm sure you all feel this way sometimes.
 

keywest67

Registered User
Mar 19, 2012
169
Coventry
Hi Miss Polly, I'm very sorry to hear of your situation, I went through similar with my Dad, I think as you said it's time for your Mum to go into residential care, once they become totally incontinent it's too much to cope with at home, my Dad was a struggle to change and I know it sometimes took 3 people to help change him in the CH but they are trained to manage this and they have the right equipment to make it easier, my Dad wasn't a big man but he was strong and would lash out, I think it's one of the biggest issues people face with the disease because it's so unsociable, Dad soiled himself whilst out with Mum a few times and she was so distraught.
In the care home the incontinence team assessed dad and he was provided pull ups, we didn't have to pay for them, I think because they were more in the style of putting on a pair of pants he accepted them, the pads he really didn't like.
How I hate this disease and what it does to our loved ones x
 

BR_ANA

Registered User
Jun 27, 2012
1,082
Brazil
Can you ask manager to schedule potty breaks for you mom every 2 hrs ( it kept my mom continent for some time)