should I give sick day rules whilst waiting help?

[RT18]

Mum has dementia so can’t really give me accurate info.

She’s been less good on her feet this past week. I’ve been contemplating whether she may have started a flare as it started 6 days after her last covid booster.

yesterday she felt weak in the morning but picked up throughout the day so I wasn’t worried that much generally.

this morning she went to the loo at 4 am no problems, but just now says she can’t stand. Given her usual pred just now.

im waiting for 111 as need to rule out an infection- but whether an infection or flare she will need more pred - shall I give 5mg more now? 111 looks like it won’t be quick today.

[PMRpro Ambassador]

Are you able to assess WHY she can't stand? Is it the process of getting from sitting to standing or can she get up but is then too wobbly? What dose is she at now?

[RT18 in reply to PMRpro]

she struggled to pull herself up to sitting and then just said she couldn’t stand - but didn’t really try and said she felt weak. I can’t tell if it’s her dementia or physical. Yesterday she said she felt weak in the morning but picked up in the day ok. But did say she felt a little wobbly.

She alternates 6.5/7 and I think is on the edge of adrenal insufficiency. She takes pred at 10am and then usually sleeps to midday.

When she was initially diagnosed GCA she had constitutional weakness, depression and lack of appetite.

She’s only been unwell once since with UTI and that had clear urinary symptoms.

I’ve passed 111 triage and am told I will get a call back.

I guess i want to rule out infection and then if not treat as potential flare???

[PMRpro Ambassador in reply to RT18]

I am sorry to say it, but these are also signs of the physical decline that comes at some point in chronically sick elderly persons. I imagine she is on the edge of adrenal insufficiency but she does also have a progressive disorder and the changes can be quite sudden as I know from experience. I had great difficulty getting through to the community nurses that it was a clear change and happened overnight, Is she also sleeping more?

[MDT1 in reply to PMRpro]

I would agree with PMRPro here but also to add that if the dementia is alzheimers related then there is also a progressive inability to use the body as one once could. My own mum lost her ability to walk, it was like the neurones did not connect in her brain to alllow her to do it, she was not in pain though, is your mum in pain? If she is then whether thats an infection or a flare might she not need the boost of pred anyway? I thought that was how it worked?? PMRPro or Dorset lady may know better?? I have certainly boosted when illness or a flare etc - lots of love to you x

[RT18 in reply to MDT1]

thank you. I think for me part of the worry is knowing whether it is just dementia decline & making arrangements for that, or whether there is something to be treated. She’s certainly needed help knowing where to put her hands to help her mobilise recently so that part of the brain is now affected.

She’s very stoic so getting info re pain is nigh on impossible - I have to just observe.

I had always thought u applied sick day rules when on antibiotics which is what have been given, but the GP said no yesterday. Since being diagnosed with GCA I have asked repeatedly about sick day rules and get a vague response every time!

[MDT1 in reply to RT18]

Bless you, its hard enough sorting oneself yet alone a poorly relative xx

[RT18]

that has been my assumption all week that it’s a stepped decline in her dementia….but I don’t want to miss something obvious that needs treating especially as it came on 6 days after her covid booster. She’s slept for 12 hours per day for the last 6 months. She’s quite far on in her dementia but these things seem a law to themselves

[PMRpro Ambassador in reply to RT18]

They are indeed, Are you going to be able to cope with the physical change since getting to the loo will pose an obstacle? Do you have assistance? Big hugs - it was the unpredicatabilty I found hardest.

[RT18]

thank you. I’m sorry to hear you’ve had to experience this journey too. She’s now managed to get up as normal (for the past week) and eating breakfast without help.

How would I know if she is having a flare? Should I ask for inflammatory markers to be reviewed? They were up on diagnosis.

I have a GP calling me but she now seems the same as yesterday so probably not a deteriorating infection.

I don’t have help as yet but work in social care so we will have to get carers in to help when mobility goes.

[PMRpro Ambassador in reply to RT18]

Not my mother, my husband, during Covid and with no experienced palliative care service like the UK - I had bought a book but didn't get round to reading it until too late for help on all the questions I wanted guidance on!

Markers are a mixed blessing - they can lag behind in a flare and often don't rise at all if a patient is on pred so don't always give a clear answer. Not much help I know. How does she react to been poked to take blood? I assume they will come to you?

[RT18]

That must have been pretty awful during covid. I had read your husband died in the last couple of years but didn’t pick up he had dementia.

I’ve got the GP coming out - they wanted me to take her but I’m not sure I’d get her out so insisted. They queried why I knew all the right terminology when I was discussing her presentation. Thanks to self education here and with the Alzheimer’s Society equivalent forum.

She generally doesn’t like being poked but usually allows professionals with a bit of minor fuss.

She does seem sleepy today but she’s eaten and drunk well.

I guess they can take obs etc to rule out infection but it seems harder to diagnose if it is autoimmune related. She had a 5 week hospital to stay to finally get the GCA diagnosis as she just ‘wasn’t right’ with high inflammatory markers. I’d want to know it wasn’t GCA or a bit of PMR before then settling on dementia decline and making the necessary arrangements.

[PMRpro Ambassador in reply to RT18]

It wasn't dementia in the Alzheimers sense - possibly a degree of vascular but never diagnosed, Not sure how you would class what he went through, malnutrition contibuted a lot to the decline, cognitive problems varied and improved when he could be persuaded to eat and drink. But there comes a point where the damage is irreversible. I knew that but no-one woud talk about the elephant in the room

[RT18]

GP has been. Chest etc clear but has a mild temperature so have given antibiotics. Told not to increase steroid for sick day rules. Ironically she had a mild temperature with GCA diagnosis which was one reason they kept looking for what was wrong when initially diagnosed

[DorsetLady PMRGCAuk volunteer in reply to RT18]

Let’s hope she improves with abx….

[RT18]

thanks ladies, I appreciate your support. Will see with the antibiotics. I’ve seen her through both a GCA and UTI and this is a lot more like GCA but I guess time will tell.

[SheffieldJane in reply to RT18]

I looked after my mum for 7 years with frontal lobe dementia, latterly in a care home, round the corner. My first thought was a UTI. Dementia is a deteriorating condition though and it’s not linear. I just want to send you love and strength, she is so lucky to have you, you make her sound very sweet. Don’t forget, it is vital to look after yourself in all this. Ensure that you are getting all the help/ equipment that you are entitled to.

[RT18]

thankyou SheffieldJane so far she has been a pleasure to look after and is very sweet. This evening she was more than happy for me to go for a walk which she knows is my well-being respite.

I was thinking about equipment. We have the basics but she may need something to help her get out of the chair. I wonder if you can get a quick response OT these days?

Im assuming there’s no problem taking antibiotics at the same time as the pred dose??

[SheffieldJane in reply to RT18]

The Alzheimer’s Society website reputedly a good resource for advice on help that is available. I don’t think there are issues with antibiotics and Pred but ask your pharmacist to be sure. There are sizeable gvmt grants ( means tested) to enable you to adapt her home and buy helpful equipment.

[RT18]

thanks SheffieldJane I may call the Admiral Nurses as they will know the latest info. I have a fear of her getting stuck on the loo and having to call the fire brigade or something 🙈🙈