Cockroach Cafe 🪳Autumn 2022 🪳

[MereDintofPandiculation]

Welcome! I’ve taken advantage of the relative quietness recently to have a good “spring” clean. And also install solar panels and get in a good supply of logs for the stove.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. So 🪳 mes amis/amies, and may you all live to fight another day.

Fingers crossed @Lightuptheroom

@Lightuptheroom fingers crossed the district nurses can prompt some action.

I woke up feeling a bit rough this morning, and I've just done a covid test and it's positive. I think I've solved the mystery of mum's sudden deterioration on hospital discharge last week - there was COVID in the unit, and we had to do PPE & only one visitor while she was there, but she started being bad within 48 hours of hugging the nurses before coming home. And I've fallen ill within 48 hours of kissing her goodbye on Monday (no contact allowed while she was in hospital).

Good news is that she's much better, so if she can shake it off in a few days, I'm hoping I can too. Ironic though - I've managed to avoid it for 3 years to make sure I didn't give it to her, wearing masks long after everyone else stopped etc. And then she passes it to me!

I want to write to my mum's GP to draw attention to a couple of things I'd like him to discuss with her - things my DM doesn't raise but which I think will give a more complete picture than her GP currently gets. I don't know how to word it & would

@MissMarplesNiece jumping in before you've finished...
I would keep it very simple. Something like 'i am worried that my mother is not giving the full picture when she talks to health professionals. I have seen myself that X and Y happens every day/at least once a week/constantly. This means that she avoids eating/doesn't go out/ etc etc. She also tells me that X happens daily but I have not seen this.

I know that you can't discuss this with me but I felt you should know about these things at her next appointment.'

Hello everyone, cockroach all.

Sorry to jump in here but I need to offload.

On 31 Dec Mum fell in her room at her care home, unwitnessed, and was hospitalised. She was discharged the following Friday having been treated for a severe chest infection and I visited her the next day.

I was appalled at the state of her injuries. Black eye, swollen face, yellow brown bruising to the cheek, extensive black bruising to her neck, and a huge swelling above her left eyebrow. I am not medically trained but it was obvious to me that she was in pain and very, very tired.

Various senior members of staff saw the state she was in on return. No one at the home or the hospital mentioned how serious her injuries were, and no one at the home thought to involve the GP for additional pain relief. She was sitting in the lounge with the other residents, tv blaring, looking like a domestic abuse victim.

I was absolutely horrified, deeply concerned it was possibly non accidental and got the community matron out on the Monday who did a Video consult with the GP while I was there. I was reassured the injuries were consistent with an accident. A safeguarding concern has nevertheless been raised with the LA by the GP practice. I spoke to a senior manager who did not inspire confidence in me.

Driving over on Weds, I had a further call from the home. Unbelievably Mum had fallen a second time, out of bed, onto her face, and 'there was a lot of blood'. Indeed there was. I arrived to find her moaning in agony complaining of neck, hip and back pain, on the floor, bleeding from the nose. I actually thought she was dying in front of my eyes.

She was given morphine, taken to hospital and discharged with no broken bones thankfully.

Needless to say I am beyond livid with the home. I have established that her alarm went unanswered for nine minutes and she was found not by a member of staff, but by the district nurse who had called to check on her.

At my insistence she now has a crash mat, a low adjustable bed and is being checked, allegedly, every fifteen minutes. A relative who visited today commented that I had clearly put the fear of God into them. I do hope so.

Her poor face is in a terrible state as she has fallen twice onto the same area. I am taking photos to document it and they are very shocking to see. The GP practice are being brilliant and have texted me a link so I can send the photos through for uploading to her medical record.

Meanwhile I am researching other homes more local to me.

yikes in my mums home they all have the beds low and alarm mats in place not that mum is likely to go anywhere as she has no mobility really I thought all care homes had them they also have regular visits from gp district nurse and dementia care team

Words I'm horrified.

Your poor mum. I don't know where to start. In respite care my mum was also given a low bed with an option to pull up the sides.

I understand the care home would follow whatever meds the hospital gave, but how could the hospital not give anything? Is it possible she refused pills?

@Words that's horrific, your poor Mum. Do they know why she's falling? ie is it a medical condition, medication side effect, low blood pressure etc. My Dad had a fall when he moved into his nursing home but he now has a pressure mat and regular obs. And he has bed rails at night, with his bed almost on the floor.

It's bloody hard enough having someone in a home let alone when you're not feeling happy they're being cared for adequately. I posted earlier in the week about Dad's care but in fairness to the nursing home, they've really taken it on board and we've had a massive improvement in the last 2 days thankfully.

Thanks for your kind words everyone. Mum has dementia and has been wandering in the night apparently unsupervised. She has an alarm mat and it is not clear whether this was working at the time.

I have requested the maintenance logs and a copy of their checking protocol, as well as a record of all incidents and hospital admissions since the new provider took over in Jan 2022. Yes, that is key, I think. Previously it was a family run home providing an excellent standard of care. Now it is staffed with agency carers from various African countries, many of whom have English as a second language, so communication can sometimes be difficult.

The second fall was a fall from bed. The other falls could possibly be low bp, that's quite common in the elderly. But over riding that is inadequate supervision.

I learned from an independent source that bed rails are not recommended for dementia patients as they can cause further injury with limbs stuck through, attempts to climb out etc. In their update yesterday after questioning they conceded she was still slipping out of bed onto the crash mat. 'I always try to be honest with my families' said the manager ( the one who didn't return my call because she was in a public place.) I told her I was relieved to hear it, but I think the irony was lost.

Mum was discharged last Friday on palliative care from the hospital with my consent with a package of drugs, including the ominous 'anticipatory' ones.

A further failing was that I called the on call manager from the site after I had seen the state Mum was in, and left a voicemail requesting an urgent call. That came seven hours later, with the subsequent excuse from her manager that thé on call staff member had been out in a public place where she couldn't discuss patient confidential matters. Words fail me.

However. I don't want to act in haste about the move. It's likely she is approaching the end of her life , although I know from previous experience that this stage can continue for longer than anyone would think possible.

Forgive the very tasteless comparison, but just as a place where an extreme incident has occurred is probably safer than most other places afterwards due to heightened vigilance, I am hoping that for now, the measures they have adopted will suffice to minimise risk in the short term. They know I am watching like a hawk, and I will not let it drop. The 15 min checks, if indeed they are happening, are some comfort at least.

A move now would be very distressing and disorientating for her, and the GP practice who have known her for decades is absolutely great. It's in a different health authority from my own, ( I would look to move her closer to me) and they are piloting all sorts of innovative things in elder care ( like the community matron service in addition to the district nurses, which I can't praise highly enough. )

However I will continue to explore all other options, alongside pursuing this complaint.

@Words the length of time to call you back is unacceptable, but it sounds like the manager is hiding behind information governance (which does indeed make it that you can't discuss residents in a public place)
Have you contacted CQC, when was the home last inspected.
Ask to see the sheets that staff have to sign when mum has been checked, there shouldn't be any gaps.
Also, if she is self funding, watch out that they don't try and charge extra for the checking, MIL care home tried this and we successfully fought it as it was a standard level of supervision.
No, bed rails/cot sides aren't recommended as you say but they should be taking steps to make sure that if she's rolling out of bed that the crash mats etc are properly in place.

Thanks @Lightuptheroom . I will check when it was last inspected. I have a friend who works for the CQC and am going to contact her.

Also hoping that the safeguarding will alert CQC.

They don't investigate individual complaints according to their website. The route is internal process followed by ombudsman it seems.

Thanks for the heads-up regarding additional costs!

Regardless of information governance, the on call manager should surely not have been in a place where she could not respond to , or action urgent issues regarding those in her care.

@Words that's right about individual complaints, but it should still be going through a process that has to be highly visible.
Regarding the 'on call' manager.. unfortunately they can indeed be anywhere. In that scenario the manager could be at home, out shopping etc, they are literally 'on call' for anything management level occuring (I spent 15 years as an administrator in care homes) But, regardless of that she should have been able to ring you back within 30 minutes to an hour at the most even if she's unable to action anything immediately. At night, there are normally 3 staff on duty, one should be a senior carer.
If she is known to 'walk purposefully' (don't get me started on the powers that be need to not have you say 'wandering' then there is a whole range of 'telecare' available to ensure that they know she is up and moving. Essential because nobody can have eyes in the backs of their heads.

That's so helpful Light thank you.

Long time lurker here.

I'm being worn down by the constant moaning from my Mum. I hate talking to her (phone, we live about 3 hours away) it's just a constant stream of moaning about her friends, moaning about her GP (who I actually think is very good, especially given the circs ATM!). I've reduced phone calls down to make it more bearable. I've tried distracting her but she isn't very interested in anything else or just wants to criticise things we're doing.

Just AARRGGHH.

waves madly at Riding hello! I was on the "moving home" thread last year, till it fell through, can't recall my UN from then but pretty sure it was Emma something!

Depending on the situation, I would tell your mum that you're tired of listening to the grumbling. IME distraction doesn't work. But when I told mum it was draining and annoying, she took that on board. Now we just say to each other if we don't feel like chatting. Of course, some moaning is fine, but I reached the point my head was about to explode. My dad would moan for three weeks if post got delivered wrongly - it was just ridiculous.

Question for you lovely peeps.. adult social care re enablement have done their review on my mum, she's to be given a case worker as they've decided her needs are mental health rather than social care. Anyone with any experience of what this actually means?

Hello all, I am new on this thread after having been signposted here from the Alzheimer and Dementia board.

My dad is 78 and was diagnosed with dementia in February 2020, before the world went mad for 2 years. He's never really been assessed and managed properly, it's all been done over the phone and the GP and hospital don't seem to talk to each other. Mum is his main carer, she is 77 and has no real health issues of her own - but she is 77. I live 90 minutes' away, my sibling is considerably further. Certainly not a "pop over every day" distance.

Dad's dementia was managed OK for the first 18 months or so, he's on several drugs (mum manages this, will not share what he is on and why), but recently he has been significantly worse. Shouting out, paranoia, can't settle. Good days and bad days, but bad days outnumbering good at the moment. Mum is not good at asking for help. Actually, that's an understatement Mum is shit at asking for help. They have never seen anyone from Social Services/Care and see accepting any sort of help as a failure.

I'm really struggling. I dread going to see them as it is upsetting and difficult. I am menopausal, have three teenage children and and I'm in the final year of a Master's degree. I feel really guilty for not being there more. I know there is no good end to this, it's just a case of how long before we have to start looking at care homes.

Dementia is awful.

Hi @EmmaEmerald oh yes, I remember you from that earlier thread about moving!

Thank you, I'll give that a try. I was just so fed up with finding the time to speak to her when I've got a million other things on the go, then all she does is moan at me! I know it's because she thinks she should be top of my priority list when the reality is that she's barely on it at all.

Welcome @HufflepuffRavenclaw. Sorry to hear about your Dads dementia. As a recent newcomer myself, I can say this thread is fantastic and I no longer feel like the only person in the world with the emotions that I feel when dealing these issues. I hope you find it of use too. Mantras that sometimes help me on bad days:

• Put your own oxygen mask on first
• You can only do what you can do
• You are only responsible for your own happiness, you are not responsible for the happiness of other people

in addition Emma who is on here made a cracking comment on another thread to the effect that our elderly relatives who insist they are independent and can manage, subconsciously mean “I reserve the right to cock it up and expect you to to swoop in and fix it all” which struck a note and helped me detach a bit in my situation.

Hello @HufflepuffRavenclaw. Are you me from 3 years ago? If so, brace yourself, it's bumpy but I'm still just about doing ok despite intermittent crises.
Work, DM and teenager conspire against me but this forum is a godsend to put it into perspective - along with trashy TV and an odd glass of wine!

Thank you all. I am feeling torn in several directions at the moment and know that there is nothing I can do to ease the problem. I had a very good discussion on Wednesday with the (lovely and friendly) person on the 24 hour emergency line at social care who was able to reassure me that should anything happen to Mum, even temporarily, they would make sure that Dad was taken care of and safe. He absolutely couldn't be left on his own, and as utterly selfish as it sounds, he can't come here and I can't move there permanently either.

The way things are progressing I think we'll be looking at care homes in 6-9 months and I think in all honesty that will be a blessed relief for both me and my mum. Having someone else take the responsibility for reassuring him that there are no "bad men" taking his car, or trying to break into the house, or trying to poison him with medication.

It's just this interim phase - which nobody can estimate the length of - which is so hard.

Riding "I know it's because she thinks she should be top of my priority list when the reality is that she's barely on it at all."

I'm so glad you said that! Sounds like your mum is at the stage she doesn't need anything but just wants a moan? I had that trouble with that stage as well - wondering why that should be a priority for me.

There are non-urgent things that mum asks me to do and now I just say frankly "not on my list". It is actually better to be honest, I find. Otherwise I'm just seething with resentment and cry a lot!

@HufflepuffRavenclaw No harm looking at care homes this month just to see what's out there.- you never know if things will take a rapid lurch in the wrong direction. Almost always it happens quicker than you think/ hope. I truly dreaded going to see around a care home but after the first two 'inspection' tours it gets easier

@HufflepuffRavenclaw there may be local facilities such as lunch clubs for couples where one has dementia; respite offered at day centres; carers for respite breaks at home. I'd really encourage your Mum to try and engage with whatever help she can get, even if its for 2 hours a week so she gets a break. And an occupational therapy referral from the GP may be useful to make sure the house is safe for your Dad such as cupboard locks etc. I used to work in care and can't emphasise enough how important it is to look after the carer as well as the patient themselves. Put simply, they're often the ones that die first due to the strain on their own health. Dementia is relentless.

Slightly better days here. After my hissy fit at the nursing home, things have improved dramatically and Dad's far better on the altered medication. I had a long chat with the palliative care nurse and I also found some podcasts/youtube interviews with an amazing palliative care Dr (Kathryn Mannix) which has been a big help. Dad's really sleepy, and can only communicate for short periods of time now. Visits now mainly consist of a brief chat, then sitting holding his hand while he sleeps and reading a book. It's strangely very calm and he's happy that we're there. I don't think he's got long left, but he's no longer agitated and touch wood not overly medicated.

I did have a moment of complete panic yesterday that he won't be here soon, and it gave me the most horrendous pain in my chest that took a long time to subside. My Dad has always been my active parent (I'm not close to Mum at all) and it's going to leave me very alone... Dad's always been in my corner even when I've fucked up or been wrong. He's simply irreplaceable and I'm already missing him