🪳 🪳 🪳 Cockroach Café Late Summer 2024

[MereDintofPandiculation]

Welcome in to the Cockroach Café Bad Daughters’ Room. all fresh and clean for the new season. Join me over here on the sofas amongst the rugs and cushions if you’ve come in from the rain, or over the other side in the shade if it’s 33 degrees outside. Looks like it’s either one or the other.

Good daughters, find your way to the small room behind the stairs. Sorry it’s not as equipped as here, but it doesn’t get much use.

Come in when you want to share good news, or to rant, or just to hang out with others who understand what you're going through. The way MN works, hopefully this thread won’t appear in any featured lists, and the only people wandering in will be those who understand what it’s all about.

If you have a BIG question, it might be worth giving it its own thread, so as not to swamp this one.

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. My recent enquiries suggested more people wanted to keep the well known name than wanted to change it to something more savoury, so for the moment it stays.

I'm back again. DM was discharged from hospital this morning having been in for 10 days with acute confusion. The ambulance crew who took her home phoned me because they felt she wasn't safe to be on her own (lives alone.) But they had to leave her.

She had her usual 2 short carer visits to give her her medication and I'd booked a lunchtime visit in as well.

I'm an hour away and currently have Covid & feel really unwell with it so can't get over to her.

Her neighbour found her wandering this evening with a note to me to say she needed cat food.

He got her back inside - he had bought 30 tins of cat food on Friday for her - all completely disappeared. Eventually he found them in her oven. Apparently there is a cult in her house who steal everything.

I phoned out of hours social care who said they can't do anything and to phone an ambulance.

I've done that and am waiting for a call back.

What do I do? She clearly cannot be at home in her confused state and should not have been discharged, and I cannot go over to her both because I feel so unwell and also because I don't want to give her Covid.

I just don't know what to do

@notcopingwellwithDMdementia oh goodness just wanted to send a hug for you. Is there a reablement sort of facility in your area? Do you think you would be able to speak to social services and see about looking at a care/nursing home - not ideal I know as it seems a huge leap but at least you could visit for time with Mum knowing she is in a safe environment? Social worker might be able to help you with issues around deprivation of liberty (DoLs) as your Mum is not coping alone and that has to be a safeguarding concern. Hope you have some support yourself?

@notcopingwellwithDMdementia what a horrific worry when you are unwell. But.... because you can't step in, it sounds like this might be a crisis which changes things.

This does sound as if a care home in at least the short term is what she needs. Round our way there are NHS funded nursing home beds as a step down from acute hospital, I think a lot of areas have them now. If she's too confused to cope at home, I hope that the hospital team will try to sort something like that out.

Hi @BlueLegume, thank you for your reply. DM got taken back to hospital in the early hours - the ambulance crew were very concerned that she was unsafe to be alone.
Apparently she was quite aggressive towards the ambulance crew last night - it took them a long time to get her to go with them and at one point they were talking about potentially calling the police to help them.
Because DM owns her house and has some savings it seems that she is not entitled to any help.
She also was deemed to have capacity on Friday by the discharge team.
And she doesn't have a dementia diagnosis yet - she is part way through the assessment process. I foolishly thought that without a diagnosis the doctors wouldn't be able to just send her home.
I'm guessing that I need to be more forceful in disputing her safety to be discharged without a plan in place this time?
I honestly feel that I can't cope with all of this and currently just don't have the energy for it.

Thank you @PermanentTemporary - she had reablement carers when she was discharged in March.

After that we put in place private carers twice a day to support her taking her medication - this seems to have made the discharge team believe that she is fine to be at home.

I am normally far more on top of things but just don't have the energy to deal with this at the moment.

I'm so sorry.

Don't panic. You are too ill to deal with this.

It is true that many people do cope better at home than in hospital. But not this time. This is very clearly a failed discharge and that SHOULD make them think twice.

Again in our area the step down nursing home beds are NHS funded for six weeks (much cheaper than acute hospital). Yes she might have to pay if she needs to stay longer, but one step at a time.

Don't be afraid to burst into tears if they ring you. Tell them you are extremely worried and no longer coping. Unload a little of your stress onto them. Make it their problem.

Thank you @PermanentTemporary - I will tell them that she needs a re-ablement care package in order to go home - either in the home or as an inpatient somewhere.

What is so frustrating is that until Friday she had security in the hospital but they removed that for a day and decided she was fine to discharge (despite her then stealing lots of other patients possessions on the ward - followed by a phone call to me from a nurse to determine how many pairs of glasses/walking frames/walking sticks she had come in with as she now had several of each in her possession!)

@notcopingwellwithDMdementia I agree with @PermanentTemporary . Do not make yourself available. Clearly there is a ‘new’ baseline health wise and that needs addressing by qualified professionals, not you.

What do you mean by not available @BlueLegume?

Just as I am honestly right now - unable to go and see her, as I am usually - able to see her once a week for a few hours or say I cannot offer any support to her at all?

I want to make sure she gets the right support to try to bring her back to the level of independence she had prior to this latest 'acute confusion.' And if she can't come back from it then at least we should be in a position to organise what happens next.

I really appreciate your help - thank you

Because DM owns her house and has some savings it seems that she is not entitled to any help. She is entitled to help. But she has to pay for it.

say I cannot offer any support to her at all? This. Then you can give extra if you wish. If you say “able to see her once a week for a few hours”, they will factor this in, and you will be unable to take a holiday or have a week off if you get Covid.

@notcopingwellwithDMdementia sorry I didn’t mean go no contact with her I meant that maybe it is time to tell the authorities you are not available to be her carer and that it is time for a bigger conversation about the next steps - which may well be a home so she is safe and not a worry to neighbours etc.

Because DM owns her house and has some savings it seems that she is not entitled to any help. She is entitled to help. But she has to pay for it

@notcopingwellwithDMdementia to back up what Mere has said, if your DM is assessed as needing care then this can be arranged (in my mums case via the Local Authority after her discharge from hospital which instructed care was needed). As mum has some savings, she gets a bill every four weeks from the council and she pays.

if you say you have privately arranged carers then they will be happy to do the rope and let you sort it. The advantage of having LA commissioned care is that DM is “in the system” and in theory under the supervision of the Adult Social services, so if the carers thought she wasn’t coping and needed more care then they’d refer back the LA. In practice they deal with me for the day to day queries, but it’s good to have that back up, particularly if I was out of action.

Id be tempted to cancel your private carers and get your mum in the system of her local authority.

@notcopingwellwithDMdementia sorry to hear you’re unwell, I hope it clears off quickly. Regarding your mum the others have said what I was going to. If you’re paying for private care you’re unlikely to pay more for LA arranged care, and it has several advantages, not least that it saves you a job down the line when the switchover is/may be required.

Just say no, maybe don’t even answer the phone. Look after yourself, keep warm and eat nice things x

Another advantage of arranging care via the LA can be paying a lower hourly rate and lower minimum charges. At the moment mum only gets a 15 minute daily welfare check. If we arranged privately the minimum charge would be 45 minutes and we'd pay an extra £5 or more per hour. The £10 per month admin fee fron the LA is small beer in comparison and pays for itself on day 1 of each month.

How do I go about using the LA for care?
When DM finished the re-ablement care package in March I was told that she did not qualify for anything else and that I'd have to arrange private carers for her medication support, which is what I did.
Should I contact social care and speak to them?

I could have written this. If they try and discharge again keep saying “carer burnout” and “unsafe discharge” on repeat. Tell hospital and social work that if they discharge, you want their names and will hold them personally responsible for anything that happens here on in. I completely sympathise but please don’t let them railroad you. Tell them you’re relinquishing all responsibility (you can obviously go and see her when care is in place). I almost had a nervous breakdown as I was getting the brush off and had to get firm and angry.

We were already in contact with SS because we had concerns re mum caring for dad. She insisted she could look after him without carers but clearly couldn't because of her alzheimer's. In a way it was lucky when the district nurse realised mum had majorly overdosed dad with oramorph as it proved our point beyond doubt. This was shortly after she had emptied al his tablets (he was on 12 different ones) into a bowl and she used to shout at him for not doing the ironing when he could barely stand. It was lucky the oramorph didn't kill him but when he came out of hospital with a re-ablement package we could tell mum that if the sacked them again dad would have to go into a home. When the re-ablement package ended SS took over arranging carers and they carried on checking on mum once dad went into hospital the last time.

I would get on to the hospital social worker.

Talk to the discharge coordinator on your Mum's ward. They really vary, and obviously they aren't completely in charge, but make sure they understand what was happening on the previous ward and what happened at home. They can be a good source to understand what options the team can use as well.

Again, don't be afraid to cry - if you're feeling it, show it.

@notcopingwellwithDMdementia you’ve had excellent advice- other useful phrases to use with the hospital discharge coordinator are “ unsafe discharge” “ risk of readmission” - things which affect their stats.

@notcopingwellwithDMdementia as @thesandwich says. Use the key phrases suggested. It is a little like a school pupil - mention ‘safeguarding’ and the approach is very different than ‘oh I might be able to manage’. The data and stats are very important.

Thank you all so much. I spoke with a nurse in A&E this afternoon who was very much of the view that DM should not be going home without a good plan in place, she said she would be recommending this very strongly.

I will use all of the phrases mentioned and if need be, sob a little. I am going to push for some sort of respite care for her via the LA.

Thank you again

Coming in for a strength injection. At outpatients with mum. She wasn't answering the phone when I tried to call and remind her so she was still fast asleep when I arrived 20 minutes before we needed to leave. It was like herding a cat. I've been up since 5 as I needed to muck out my horse before my hour trip to.her house. Knackered already.

Oh yes, the mum wrangling. Going anywhere with DM requires a military organisation operation. Mine has lost all sense of time so will wander off to go and do something else half dressed, so needs constant supervision and chivvying along. And YY to having got up at silly o’clock to get yourself there.

Solidarity.

@countrygirl99 also solidarity.

DF would obviously have got up only on my ‘I’ll be there in 30 minutes’ warning text and tell me he’d gone to bed at 3/4/5/6am so only had 2/3/4/5 hours sleep - when the appointment had been booked for weeks and he’d had lots of reminders a week and over the days before. Also diabetic - so horrendous self-neglect in that he’d usually not done blood sugar, meds or eaten.

Plus you’re juggling appointments in between your own life so often know after herding that cat, you’ll be back at work.

Sending strength for the rest of your day.

Yep, mum did the wandering off thing. Wanted to eat, fine a quick bowl of cereal, then wandered off to change her socks and left it then insisted she'd already eaten it when the bowl of cereal was still untouched in the kitchen.
Thankfully the hospital was efficient but she now has referrals for 2 batches of tests. Joy.