What is the right decision

[concerned73]

My nan lives alone in an upstairs flat she was disgnosed with alzheimer's a couple of years ago.
Up until about 2 weeks ago she managed ok with 4 carers a day and meals on wheels. She was feeding herself and happy.
About 2 1/2 weeks ago she refused to get up and stopped eating and drinking. She was crying with back pain.
She went to a and e and they said she has arthiritus but no physical reason why she can't get up.
Nan seems very withdrawn, only eating small amounts and drinking very small amounts. Carers don't turn up when they are supposed to and some leave food by the bed instead of feeding her.
I had a review with her care agency last weds and with social worker last thurs and we arranged to get nan into respite care to try to get her eating and drinking and to sort out her pain. This was all arranged and Nan should have been going tomorrow.
My mum (nan's daughter in law) decided today that she felt nan shouldn't go to respite. Felt cruel to move nan away from own home and would upset her. My mum has postponed the respite.
There are points where nan doesn't know where she is and when she went to a & e last week she wasn't at all fretful about going home.
I'm very concerned if nan stays at home she will just waste away.
I'd appreciate any advice.

 

[jenniferpa]

Hi and welcome to Talking Point.

Do you know if she has been checked for a UTI (and/or constipation)? Both of these can 1) cause a dramatic downturn and 2) cause back pain.

I'm sorry your mother has cancelled the respite. The reality is that whether this is the right time or not, there will be a point in time that your Nan will need to be in residential care as she will not be able to live alone indefinitely.

 

[concerned73]

Not constipated. The gp prescribed antibiotics last week incase there was UTI, she has now finished course. I don't think there was uti as she made no complaint when on commode.

Main problem is the care she gets at home is just not good enough. For example today her early morning carer didn't turn up till 11.20 am, lunch carer hadn't turned up by 2. Sunday she had morning care at 7 am next visit wasn't till 3 pm.

She needs 4 hourly pain killers for back pain but they don't turn up every 4 hours, some carers don't spoon feed her, some carers leave her meds by side of bed, thats why i feel we have no alternative but care home.

 

[jenniferpa]

Actually - for a lot of the elderly a UTI can be "silent": no symptoms other than increased confusion and a downturn. Unlike with younger people there may be no sense of burning or increased frequency.

I wouldn't be convinced that it wasn't a UTI (or that it had cleared) just on the basis of completing a course of antibiotics: the GP needs to run another test to check whether a UTI exists: often the first course of antibiotics are not specific enough.

Having said that, though, all you can really do is keep pushing the care provider to live up to the terms of their contract (either with your family or with the council - whoever is paying for this). If your mother is the primary carer, I do think it is also important that you support her as much as possible, even if you feel this decision is unwise - guilt is a pretty constant companion when it comes to carers and this may be an issue for her.

 

[concerned73]

The care agency are the primary carers followed by myself. My mum is the nearest geographically but spends little time with her and says she can't wash and dress her etc.
Guess thats why i find her decision to postpone the residential care hard to understand when most of the burden lays on me.
I'm haveing a meeting with social services and the care agency tomorrow where i will ask the care agency again to manage her care as they are supposed to.
I will also get a urine test done at doctors. Thanks for your help and advice.

 

[jenniferpa]

Well in that case, it's very unfortunate that she has taken this position - if she's not doing the caring then it's not up to her to decide when respite is or is not needed. Respite is for the carers and if she's not caring then...

To be honest, though, this sounds more like evaluation as much as respite, in that it's taking place for your Grandmother's benefit, in which case several people should be involved to decide her best interests - you, your mother, the social worker and any medical input you have. I assume your grandmother doesn't have any children still around?

 

[Canadian Joanne]

Also important, does anyone have the power of attorney?

 

[concerned73]

No one has power of attorney, although we are applying for court of protection.
My mum is adament she wants to look after my nan at home and not see her go into care. I'm gonna see how she gets on with this.
I'm very interested in any further help you can give with encouraging my nan to eat and drink and what other help is available to nan in her own home.

 

[JPG1]

The problems you are having with your Nan’s support system is so familiar! So very familiar.

Re. the possible UTI – has your GP sent a urine sample off for culture? If not, then it’s possible that if there is a UTI (and I’m not saying that there is), then without that culture being done, the GP has no way of knowing whether the antibiotic that your Nan has been prescribed is the right antibiotic. And a ‘general purpose’ antibiotic may do more harm than good. So insist on the urine sample being sent off by the GP for culture.

Would your Nan eat yogurt? If so, try it. Especially if she is still on antibiotics. Natural yogurt, replaces that which antibiotics destroys. And helps the recovery process.

Does your Nan have any other known health problems? Has she had investigation of the back pain, apart from A&E visit? Did they do an X-ray at A&E? ? Ask GP to arrange X-rays and/or scan. She may have osteoporosis, causing pain. Or she may not.

The SW is the key to this – and s/he must insist - and ensure - that the agency providing the support workers do what they are required to do: provide support according to the care plan. You do have a care plan, don't you?

Have you checked the ‘Daily Contact Book’ which should be kept in your Nan’s home? Read it – it may help you to work out what exactly you need to stick in front of the Care Agency and Social Worker when you meet.

I sincerely wish you and your Nan well.

.

 

[Tender Face]

She was crying with back pain.
She went to a and e and they said she has arthiritus but no physical reason why she can't get up.

Forgive me for being sceptical - but this seems an 'instant diagnosis' - what tests/scans have been done to rule out any other reason for the pain? What was the outcome from A&E?

If they didn't refer for further investigation the reasons for the initial admission and subsequent discharge should be reported to nan's GP - perhaps you could follow up from there? It does all seem a bit dismissive ......

Karen, x

 

[concerned73]

A & E said was arthiritus. Her posture is very curved. Has movelat and pain killers now she is no longer complaining of back pain.
I wonder if Nan strained her back; before she 'took to her bed' she would spend alot of time moving things, rearranging things bit for past two weeks or so she doesn't want to get up at all. She is having a follow up physio appointment so i can double check then and if it is still a problem i wil ask for more help.

Thanks for advice re care agency, i do look at their book and check times, it always seems to be the weekends that it all goes to pot. But i will be much more insistent that they do what the care plan says. I'm also looking at another agency that does care and nursing.