Coping with double incontinence

[Lainey 127]

Hi to everyone,
Mum 93 was put on the end of life care plan yesterday. My sister and I share her care and we've decided to try and keep her at home for her final days. She's very frail and has chronic kidney disease and COPD. She no longer recognises the need to go to the toilet so is soiling the bed all the time; she can't support herself to get out of bed onto a commode so my sister and I have to physically lift her. It's an awful strain on us, and I'm also frightened of hurting her.
Is anyone else managing double incontinence? What sort of extra help might be available?
Thanks all

 

[Izzy]

Good morning Lainey. I'm sorry to read about your mum. My own mum was 93 when she went on to our equivalent of the Liverpool Pathway. She was at home with us and she had vascular dementia. When she got to that stage we had district nurses coming in at different points through the day to give her a bed bath, change her nightie and catheter etc. There was no way she could have used the commode by that point. Is there any way you could get district nurses to help you? We were also given night sites by Marie Cure nurses so that I could try to get some sleep overnight but knew that someone was keeping an eye on her.

 

[Lainey 127]

Morning Izzy
Thanks for your reply. The Dr did mention that district nurses would be more involved now, but didn't specify what they would do, or if it was simply to administer pain relief in the final days.
Mum has CHC funding so we have night sitters four nights a week from a care agency, but they don't clean Mum up properly when she soils herself, just a general clean up which isn't satisfactory really.
I'll ask Mums GP about Marie Curie nurses.
Thank you!

 

[Izzy]

You're welcome.

Just thought - mum had a syringe driver fitted eventually to try to address the pain.

The Maire Cure nurses really only sat with mum. They didn't do any cleaning up or changing. The district nurses did that when they came..

Wishing you strength. xx

 

[Lainey 127]

Izzy, is there a fact sheet on this website about what we might expect during Mums final days?
Information on what to look for would be helpful
Thanks again

 

[Beate]

Here you go: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2709

 

[Lainey 127]

Thanks Beate,
Looks like Mum is near the end then. She's not conscious, eating or drinking and her breathing pattern has changed...her sats have dropped too. Time to call the Dr I guess..

 

[Izzy]

You possibly don't need this now thanks to Beate. Marie Cure gave us a booklet. It was more or less this -

https://www.mariecurie.org.uk/globa...ing-for-the-end-of-life/end-of-life-guide.pdf

Their site Los has this -

https://www.mariecurie.org.uk/help/being-there/end-of-life-preparation

 

[WIFE]

Thinking of you Lainey and your sister - it is a most distressing time for you all. Loving thoughts and wishes for a peaceful passing for your dear Mum. WIFE