Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

Sending hugs @turkeyboots two of my kids and DH are autistic, DC1 is also under CAMHS. It is a lot to juggle when you have kids with additional needs.

I am glad your Aunt is cleaning, it can't all be on you. You are not responsible for your DM behaviour either, she is not your child. I am glad the care manager is pushing for reassessment.

Gosh I sometimes forget how lucky I am just to have my DPs to worry about. Huge sympathies for those with multigenerational challenges .

@turkeyboots and @Choconuttolata - hugs to you both dealing with SEN kids and CAMHS alongside all the elderly care. It's a huge juggling act. DC are both ND, but thankfully doing ok, and are 16 and 19 so have a reasonable degree of independence. It's still hard splitting time and focus, but I can't imagine dealing with all of this and wee ones too.

DGM has pneumonia. Hospital treating it, but we could be in for a long ride again. I can't go and visit because I'm still getting over bronchitis myself and have very bad asthma at the moment. A ward full of respiratory infections is not the place to be, so am having to do my best advocating and supporting from a distance, and reading the riot act to the bloody gatekeepers who act like it's too much trouble to tell you basic info like your elderly, deaf relative's diagnosis and what their treatment plan is, because all they can tell you is they've got a bit of a cough!

Strapping in again, the merry go round is turning!

DB reported a bad day at the CH yesterday as DM left in wet pad and bedding for 2.5 hours. He isnt confident complaining as worried this will result in 'retaliation' by carers.

Without a doubt DM is difficult. She frequently (normally) refuses all personal care during the morning. She can be angry and aggressive at the same time so carers leave her to it. Of course to DB this looks like neglect.

Not sure what the solution is. The only person DM will cooperate for is one of the nurses (male and quite stern). DM defers to his 'manly authority'. The other carers and nurses are just too nice to her.

CH are now looking into getting the GP to look at some sort of sedation for DM. I hope they do.

I hope that sedation helps @GnomeDePlume.

@rookiemere my Mum was sandwich generation'd and had a nervous breakdown in the end.
She always told me not to hesitate to put her in a home if that was needed!

@GnomeDePlume that sounds so difficult. Of course if she is refusing there's a limit to what they can do, they can't force someone to wash and change clothes, and risk hurting them. I hope the medication is able to help.

@CrazyGoatLady @Choconuttolata @turkeyboots sympathy, I'm another one juggling ND children (well they are 20 and 22 now but one still needs significant support). However I am grateful my elderly parent crisis didn't happen 10 years ago when I was going through the ehcp process, I was close to burnout then at times. On the other hand, that journey plus dealing with DLA/PIP has some parallels when dealing with the care and benefits for Dparents so that's something I suppose. The whole thing does make it more galling that my DB doesn't pull his weight despite having no DC and a non-working partner.

@GnomeDePlume I get why your DB is nervous about complaining- it can feel like a hostage situation. My DER told me off for complaining about poor standards after the care manager went and told him. I honestly feel that this care home is harder work than when he was in his own home with 4 visits a day.

Sorry, late to this thread but glad I’ve found you. I’m mainly lurking these days as things with DM are on an even keel.
@MysterOfwomanY- my DM used to say that she didn’t want to be a burden and to put her in a home. She’s changed her mind since then!

Re: complaining about care - our Dad called and shouted at me for ‘complaining’ to the visiting carers put in place after a hospital discharge. I had called the care manager who enthusiastically asked me to let them know any problems at all - and I thought I’d asked nicely - ‘how can we manage his needs better’ as he is diabetic and wasn’t eating, sleeping, or washing. With hindsight, we’ve figured out that he had delirium - although no one told us about delirium - and the care company didn’t have enough time or continuity of staff to work with that.
There are many things we wish we could have done differently then, if we’d known what we do now - but I still think he’d have ended up in the nursing home anyway.

I definitely tread very carefully with feedback to the nursing home staff but it’s hard if they’re not meeting basic needs. But also, I see the refusal of care and even the most wonderful, experienced staff are being tested.

@ThunderFog @FiniteSagacity - it's exhausting managing the care isn't it.

I called DGM's hospital yesterday because DGM told DF they hadn't been giving her one of her regular medications. DF was on his way back to his local hospital for tests for himself, so he messaged me to call the ward. So I called the ward she's been moved to and some officious receptionist told me I'm not allowed to call them as I'm not listed as NOK (DF is) and "data protection rules" say only one person can be listed. I work in healthcare, and in fact work for a company that runs several services in this trust, including IN THE SAME HOSPITAL, and know this to be utter bollocks, their system does list secondary contacts. A&E confirmed who DGM wanted them to discuss her care with/contact in an emergency when she went in on Tuesday (DF, then me if he's unavailable) and I've done all the calls since because DF has been in hospital himself, and there's been no issue. But the acute ward were telling me that despite acknowledging DGM has given her consent for me to discuss her care, I still can't call them because I'm not NOK, their system doesn't allow other contacts and it's a data breach for them to talk to me.

Anyway, I told them that in that case, A&E had committed a data breach by speaking to me yesterday, and would they like the nurse's name so they can report it to Information Governance? Or perhaps they'd like me to do that? Changed their tune rather quickly and I got a nurse on the phone.

I fucking despair of the NHS, I really do.

Years ago, when he was a student, DS1 has a bad accident that required major orthopaedic surgery and was in hospital a couple of hours away from us. We knew because the hospital had phoned to inform us. I'd been up a couple of times and, after discussion s with OT we had arranged that he was coming back home to recover as his student house wasn't suitable. Ward clerk insisted they had no record of a phone number for me even though I could see my home, office and mobile numbers written in his file on the desk in front of her and they had phoned me more than once.

Thank you for all the support and thoughts. The issue in the CH is that it is sometimes understaffed. It isnt a problem with individual carers. They are doing their best.

A new one yesterday. The staff finally managed to get DM to accept some personal care and a bedding change only to find that DM had been hiding food in the bed! So she has been eating even less than everyone thought.

GP wont be visiting until next week so everyone including CH staff and DB will have to cope until then.

@CrazyGoatLady @countrygirl99

That is appalling. I hate that sort of behaviour. It is lazy 'I cant be bothered'. Yet, in fact, it creates work 9 times out of 10.

@CrazyGoatLady that’s quite useful to understand about secondary contacts (although I guess it might differ between trusts). Yes, it is exhausting managing the care, while the nursing home is easier than visiting care, and so much easier than doing the hands on care, things always seem to be changing with the setting or his needs. I’m also trying not to think about the letter I’ll get next month about this year’s increase in fees and arranging that as his LPA. I know I now have it easier than many of us on this board though.

@GnomeDePlume I’m so sorry to hear about the hiding food - possibly one reason why she was resisting the personal care? Our Dad hid food in his room ‘for later’ but then (thankfully) forgot about it and luckily we found it before he did 🤢 and he is still convinced that there’s a place in his room that is ‘cold’ enough that we can only leave cupboard food with him now.

I think the food hiding may have been 'for later' or just to get it out of sight and stop carers bothering her about it.

DM only likes ice cream now. She is being fed so at least cant hide that in her bed.

Did you point this out ?

Yep. Still tried to insist it wasn't there! Had to physically handle the file to show her.
Had similar with a while file when DS2 had surgery. The thick file was apparently invisible under a peice of paper. Outpatient appointments had been at our local hospital and surgery was at a regional centre. Nurse was claiming local hospital hadn't sent it so they wouldn't be able to do the surgery. I knew it was there as we'd already seen the anaesthetist and were waiting to speak to the surgeon but she wouldn't listen to me until I moved the offending A4 peice of paper. At

I'm not really sure what to do about Mum and her prescription. I pick up her prescription monthly on the same day as I pick up my own. I'm putting in the order on the app today so when I was up at her house I checked to see how much she has left, and she has 7 weeks. So she clearly hasn't been taking her tablets, nor using her glaucoma eye drops. She has everything in dosette boxes which ought to make it easier. I put a dosette box on her kitchen counter and I keep putting the eye drops box beside her bed because she needs to take that at night. But she puts everything back in a kitchen drawer, probably as soon as I leave the house, and just doesn't take any of it. She denies that she even has glaucoma.

That is very difficult @BlackAmericanoNoSugar . The problem sounds like your DM is not recognising the medication as something she needs to take. Has she had any kind of capacity assessment? It sounds like her GP needs to be made aware.

The GP will assume medication is being taken unless told otherwise. This could then lead to dosages being increased. The risk then is that DM starts taking the medication but now at a far higher dose.

One of the the things I noticed with increased memory issues was not simply forgetting to do something but forgetting there was something to do. Add to that telling anyone 'official' that everything is fine or that DC sort everything.

Sorry @BlackAmericanoNoSugar I meant to comment on this last night. I would certainly let her doctor know and if social care are already involved let them know also. DF was forgetting to take his insulin which ended up with him in hospital with extreme confusion and one of the conditions for releasing him was that the district nurses now come daily to monitor him taking it. We’re in Scotland so process could be different where you are, but certainly advising the doctor is a start point. I would also state - if this is the case - that you’re not available to check that it has been taken on a daily basis as this will be their next question.

Mum is remarkably healthy for an 84 year old, much healthier than me or DB, so she's not in imminent danger. She takes two types of blood pressure medication, a statin and glaucoma eye drops. Her mother lived to 95 and they seem similar to me health wise, so while she is likely increasing her risk of stroke it's probably not going to be this year or next year. I'm most worried about the glaucoma as she had to have an eye operation to insert a stent (probably because they started her on preventative glaucoma eye drops and she didn't take them, although I'll never know for sure) and operations are tough on people her age and I would rather she avoid it again if possible.

She did have a capacity assessment about a year ago which she passed with flying colours. I've suggested that we go back to revisit that but she doesn't see a need to. She denies that she has glaucoma, refuses to believe that she has a prescription for drops to treat glaucoma and when I wave the box in front of her face agrees that she will absolutely take them at bedtime in future, but doesn't. When I ask about the pills she has always 'already taken them this morning' and I don't want to force her to take them 'again' just in case I'm double dosing her.

I will let her GP know (she is also my GP) that Mum isn't compliant with medication. She has various people who go in to her, mostly to drive her around because she had to stop driving, but she keeps cancelling them and anyway she's no more likely to take her meds when they remind than when I remind her. DB and I would love for her to have more regular carers and someone to sleep overnight but she's 'not at that stage yet' apparently. I don't think social services in Ireland get involved with elderly people, especially if there are family members and the elderly person concerned gets pissed off at any suggestion that she needs assistance.

I can't be responsible for checking on her daily. Firstly I don't want to, we don't NOT get on but also she can press my buttons so that I can see every visit to her as a spike in my continuous glucose monitor because of the stress. Secondly DD is living in London and she's only 17 so DH and I take it in turns to go over fairly regularly so that she's not on her own for more than a week or two at a time, so I'm not even in the country some of the time.

Try not to feel guilty @BlackAmericanoNoSugar

Your mother is doing quite well, really.

I don't think there's anything you can realistically do, anyway, and your DD is your real priority.

TBF many, many years ago, glaucoma probably wouldn't even have been diagnosed, and I can't see any point in your stressing about eye drops in a lady who doesn't even remember that she needs them.

Non-compliance with medication in the elderly is a common problem, even in people who are cognitively intact.