Design for Dementia Family Caregiver Burnout - Feedback wanted

maggie6445

Registered User
Dec 29, 2023
684
0
Very true. Unfortunately tools and resources are only useful if the carer is genuine and reliable.
I had a look through the "This is Me" document as well, and although it is very useful, its size and format can be tedious to fill out and refer back to.
Actually my OH was in the Acute Assessment Unit in our local hospital last week. I told them he had dementia ,but the blue butterfly was marked" no " on his notes. I wasn't allowed to stay with him although our hospital is supposedly signed up to John's Campaign allowing carers to stay.

When I asked why the blue butterfly wasn't on his notes I was told they are now using the Alzheimer's "This is me " ! I gave them a copy as I leave a copy in his overnight emergency bag!

Still couldn't answer why he was wearing an incontinence nappy instead of a pull up as it's easier for him to use the toilet with a pull up. I had told the health care worker and nurse who admitted him to the ward that he would need toileting assistance and pull up was in case he didn't get to the toilet in time. . Obviously couldn't be bothered to toilet him but left him to use the nappy! Pretty disgusting as dementia patients need continuity in care. It's a good job he was only there a night.
 

Chizz

Registered User
Jan 10, 2023
3,665
0
Kent
Hi @ maggie6445
You said, amongst other things "I wasn't allowed to stay with him although our hospital is supposedly signed up to John's Campaign allowing carers to stay."
I know it's a pain, and time and trouble, but did complain to PALS about this? How will they change unless they get complaints?

You also said " I had told the health care worker and nurse who admitted him to the ward that he would need toileting assistance and pull up was in case he didn't get to the toilet in time. . Obviously couldn't be bothered to toilet him but left him to use the nappy! Pretty disgusting..."
Again, did you complain to PALS to try and get system changed?
 

maggie6445

Registered User
Dec 29, 2023
684
0
Hi @ maggie6445
You said, amongst other things "I wasn't allowed to stay with him although our hospital is supposedly signed up to John's Campaign allowing carers to stay."
I know it's a pain, and time and trouble, but did complain to PALS about this? How will they change unless they get complaints?

You also said " I had told the health care worker and nurse who admitted him to the ward that he would need toileting assistance and pull up was in case he didn't get to the toilet in time. . Obviously couldn't be bothered to toilet him but left him to use the nappy! Pretty disgusting..."
Again, did you complain to PALS to try and get system changed?
Yes, @Chizz I have complained to PALS
 

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