any caregivers for NAFLD out there?

[Rockabillygirl]

I’m looking to connect with other care givers to compare and support each other. My mum is 76, she has had decompensated diagnosis for 1 year and 9 months. The average lifespan is apparently 2 years. She doesn’t drink which might go in her favour but she also has lung disease ☹️

She has been managing in her own home and has a plan with the palliative care team that she won’t go into hospital now unless it’s excessive bleeding or a broken bone.

Her mobility is very poor but she has been managing on at home on her own with the help of all the aids you can get, stair lift etc. she has had a lot of falls but we have a great company now that actually come out working the hour and get her up if she falls.

She has been taking the rifaximin since her diagnosis but can only tollerate movicol not lactulose. The dr says this is okay as she has to have a balance with quality of life and even with lower doses of lactulose she was having accidents. We’ve been finding 1/2 sachet in morning and half sachet in evening keeps her regular enough. Over Xmas she was constipated and had a mini HE episode but came through it okay.

She is still eating okay but often describes the food as going down like a led weight? Often she will have something like cake or ice cream for her third meal, im not sure if it’s emotional, because she’s too tired to cook or if she just doesn’t feel like eating anything apart from that. Maybe a mixture, she has started losing weight but is still very overweight.

im still working part time but planning to take time off when she needs me more/nearer the end.

Currently she has 1 hour carer on a Friday that helps her get a bath, cleaner Tuesday morning, home help girl for 1 hour on Wed and Thurs. I tend to go round twice a day when she hasn’t got one to check in and do the dishes, lock the doors etc.

one of her main struggles at the min is having to wipe herself after bowel movement. Sometimes she is in the toilet for over an hour!

I’m wondering how others noticed the decline in the diet? Maybe this will be something I can look out for as an indication to go off work.

I feel re assured that the district nurses and hospice team will help when she gets really ill but this in between stage is very tough for me ☹️

[QuietButBold]

Although not a carer re: NAFLD, I have experience of supporting an older person who experienced continence management issues through another health issue.You might find the webpage "Continence Care" on the Carers UK website a helpful starting point:

carersuk.org/help-and-advic...

Also, there is support via the Bladder & Bowel UK organisation (see also their comprehensive Adult Information Library and their Helpline offers signposting to local services too):

bbuk.org.uk/

[Rockabillygirl in reply to QuietButBold]

many thanks 😊

[LadyH18]

I'm sorry about the really difficult situation you and your mum are experiencing at the moment. It's good she has a carers to aid you in supporting her, but obviously they can't be there all the time (I do understand from experience).Regarding the toileting, there is a special toilet called a Closomat that can be installed in place of the existing one. It washes and dries the user after bowel movements with an integrated bidet. Social services can help with getting one (someone I know has been given one).

Wishing you both as well as possible.

[Rockabillygirl in reply to LadyH18]

That’s very useful, il look into it, thanks so much

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Rockabillygirl

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you would find it helpful to speak to others with shared experience, you can register to join a group here britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust