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Elderly parents

Cockroach cafe 🪳 Spring 2022 🪳

988 replies

MereDintofPandiculation · 09/03/2022 08:54

Welcome! Those of you who have been before will notice the Bad Daughters’ Room is now called the Kumquat Room, and there are a couple of fine kumquats in the Conservatory.

Check also the Stationery cupboard with, among other things, the 🪳emoticon ready to cut and paste.

Anyway, 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.

OP posts:
IthinkIsawahairbrushbackthere · 02/06/2022 16:31

The lady from the Council I spoke to yesterday was amazing. I have messed up the form but she was so sweet and reassuring. I think once life is back to normal I will get an appointment with CAB and see what they can suggest. I feel so stressed by it all but at least the Fees for the home are under control!

Mum5net · 02/06/2022 15:04

@IthinkIsawahairbrushbackthere Have you started the process for Guardianship? I can't remember if your DM has capacity, but I suspect not. We were able to get legal aid to apply. Not sure if that applies in Wales. I can't also remember if we qualified because she was under section at the time and 'held captive' by the NHS. However, might be worth pursuing sooner rather than later. Seven years ago it took seven months. Goodness knows how long it might take now.

IthinkIsawahairbrushbackthere · 02/06/2022 14:32

Can I add my voice to all those recommending you get PoA. I don't have it for my mum and life is a mess.

Mum's money over the past 9 years has gone on paying utility bills, spoiling my kids and buying takeaways. My husband and I have paid the mortgage, bought all the food, bought all her shopping, most of her clothes. We have never lent each other money, it has always been given and shared.

Now we are trying to sort out the money for her contribution to the care home fees and I want to transfer the utilities to my name - it's my house. But no one will talk to me. I can't cancel her direct debits for her phone or for her Sky TV. The power company have said that there is nothing they can do to help me even though I have said that the account will soon be emptied. So I could in theory find myself with no electricity or gas. I could pay the money into her account to cover this but I want to be able to see the bills but I can't because the account is in her name!

So yes, get the Power of Attorney! Learn from my fail!

notaflyingmonkey · 02/06/2022 10:10

The only thing that persuaded DM to allow us to get POA was that I had to phone her bank pretending to be her in order to sort a problem out for her, that she was panicked over but unable to sort herself. I pointed out it meant I had broken the law, and that having POA would mean I could sort things like that for her legally in future.

And it turns out that, yes, I have used it to put her in a home, despite promising otherwise.

MereDintofPandiculation · 02/06/2022 10:08

@Marylou62 When dad was in hospital we learned to ring and check his whereabouts before every visit. And whenever we asked for medical info, they said “he only came on to the ward this morning, we haven’t had time to assess him”. It was as if, every time he changed ward, they dumped his medical record into the bin.

OP posts:
Lightuptheroom · 01/06/2022 11:25

Unfortunately yes it is replicated... At the moment my dad is undergoing a lot of tests. Mum is clearly in some kind of cognitive decline, all we are getting is that nobody can discuss it with us..
Regarding the power of attorney, can't do both at the same time as mum won't even have a conversation about it because she has decided that it would be used to 'put her in a home' end of conversation.
It doesn't seem to matter how you try and approach anything, once they've decided something, that's it. Dad won't even put the bills on direct debit because that would mean he wasn't paying them at the post office (which is the whole point really as he keeps over paying everything)

Marylou62 · 01/06/2022 11:24

I wrote a very long post and lost it...we had exactly the same scenario with dad..My brother eventually got them to agree at the last possible moment it seems.
Mum was doing so well that she was moved to the discharge 'lounge' where she seems to have 'turned her face to the wall' and given up. Refusing to get up out of bed and refusing food.I'm going to visit today and hope she's brighter.. Her SW is back from holiday and liasing with the hospital to find a new care home..
My question is..she's not been eating well for months now and has lost a significant amount of weight..since breaking her hip she has hardly eaten or drank a thing..We are tempting her with things she liked before but she's not interested..What will the hospital do? I'm trying to talk to a Dr today but I'm not holding my breath...
PS..yesterdays visit was a nightmare..Dad has always been selfish and difficult and I seem to bear the brunt of it..I took him to the opticians(parked in the wrong place, drove too close to the kerb etcetc) and we went for a visit after..Of course after getting my dad to the ward involving quite a long walk..(My dad is in end stage heart failure and refuses to be pushed in a wheelchair,) I then had to park quite a long way and walk back. Found my dad bewildered because mum wasn't there! They'd moved her in the night and NOBODY thought to tell us! We then had an even longer walk uphill to the new ward. suggested a wheelchair and was shouted at. Thought about going for the car but he can do it apparently..Well walking along side your dad who's a bugger but you love who's blue in the face, pale and sweaty thinking he's going to keel over at any time. He also has a huge aortic anuerism that could go at any time.
Anyway we got there expecting to get information..but no Drs available..Of course with all the mistakes made previously (another long story but reading all your PP above most of you know what I mean) I tried to question the charge nurse about her safety, Did they know she was in a secure unit before, did they know she'd tried to take her own life etcetc.?.To be told that 'we don't want a pals complaint so it's in our interest to keep her safe' !!! PS longer than the OP!

Words · 01/06/2022 10:42

Dint - she has one of those of course, but the crucial hospital admissions section apparently is not in place. Perhaps that's what is meant by an extended care plan.

Has a convo with the home manager yesterday. There is an issue with the type of blood thinning meds she is on which automatically trigger admission if she has had a bang to the head because of blood clot on brain risk.

The way round that apparently is to change the blood thinning med. Hopefully all that will be sorted next week. I will insist they discuss all potential admissions with me from now on.

This is what happens with inflexible protocol driven decision making isn't it. Hopefully this is not replicated in every health authority.

Knotaknitter · 01/06/2022 10:07

Would it be easier to do both mum and dad's at the same time, make each the attorney for the other and then have you as the second attorney? That gives authority to "your mum will do everything" but in reality it could be you. I did my PoA at the same time as I did mum's, all her concerns could equally well be applied to me. "That means you could sell my house", yes, and my son could sell mine. What's your problem? "I might never need it, it's a waste of money", I'm thirty years younger than you and I think I need one. It was worth the effort when I did need to use mum's, SIL avoided having the discussion with her mother and now has to apply to the court of protection for deputyship. It's a longer, more expensive process.

I went with the scenario of something happening to me that landed me in hospital for six weeks, my son could speak to the insurers about the house and car, deal with anything that came up with the utilities. It would make his life easier at a difficult time.

MereDintofPandiculation · 01/06/2022 09:32

@Lightuptheroom I suppose you've tried “Mum needs this to be able to do everything necessary” “i put one in place for me long ago” and “if you went under a bus I could make sure your bills were paid while you were in hospital” (never suggest the possibility of irreversible age related decline).

@Words My father’s care plan has sections for food (likes, allergies, help needed), washing (including personal grooming preferences), mobility, skin care (need for turning to avoid bedsores, care of skin because of incontinence pads), medications, as well as the all important section on medical care and whether/when to admit to hospital. It’s reviewed monthly and changes noted. It’s basically a “Dint’s Dad User Manual”

They would never send him to hospital for a non emergency without discussing it with me first.

OP posts:
Lightuptheroom · 31/05/2022 16:55

Sigh... conversation about power of attorney... Dad's immediate response 'i don't need to do that, I want your mum to have everything ' explained gently that it's not a will... Well I don't need that either, your mum will do everything that needs doing...
Door well and truly closed on any discussion.

Words · 31/05/2022 14:07

Oh Knot that's terrible. I am so sorry.Flowers

Dint you were right. The key to it all is an extended care plan. Long and short is that there isn't one for whatever reason. The GP practice explained this was the way through it all.That will be remedied next week when I meet the community matron and the care home staff to put one in place.

At last I have been contacted by someone from the hospital who is helpful and proactive. She has ensured that a copy of the deprivation of liberty order is also in mother's notes. That should trigger better communication with me, and the plan should ensure that she is not carted off to hospital at the slightest concern. It will also make discharge quicker and easier if she goes in for something more serious. Obviously fractures etc a different matter but hopefully we now have a better way forward.

Fingers crossed she will be back in the home today.

So, another tip to add to the much thumbed folder in the Cockroach Cafe Library of Top Tips: discuss an extended care plan on entry to care home, or at least ensure it is on the radar.

Mum5net · 31/05/2022 11:38

@Words Utterly feel for you and your DM. I agree, discussing the constant admissions is the best route. Your MP might be interested, too. The system is broken.

countrygirl99 · 31/05/2022 11:25

Totally get it about hospital communication, it was a nightmare when dad was in and when you do get to speak to someone what you get told conflicts with what you were told last time in a significant way.
On a more positive note DH spent the day trudging round care homes yesterday and his dad has asked him to put the wheels in motion for MIL without them visiting. But that must mean he must he really struggling not to put up a fight.

Marylou62 · 31/05/2022 10:07

Knot.. I feel your pain... It's inhumane to keep us in the dark so much.. Happened when dad was in for Covid.. With mum asking how he was, why couldn't she see him, where was he over and over again on a loop. Emotionally exhausting... Sending Gin!

Marylou62 · 31/05/2022 10:04

Knot.. I feel your pain... It's inhumane to keep us in the dark so much.. Happened when dad was in for Covid.. With mum asking how he was, why couldn't she see him, where was he over and over again on a loop. Emotionally exhausting... Sending Gin!

Words · 31/05/2022 09:34

Thanks Dint, It is unbelievable isn't it. It's a care home. I will ask about the care plan.

Knotaknitter · 31/05/2022 09:32

Mum was in a nursing home and on her last hospital visit one of the doctors said that they would tell the home that she was not to be whizzed off to hospital for the slightest bump because the journey was not good for her, she was to be treated "at home" with visits from the GP if required. That was what we had been doing for the last two years while she was in her own home so I was fine with that. He said that it was quite normal, they would want a scan for a serious fall of course but it was care at home where possible. (Then she died so I didn't get to see how it worked)

I have also crashed hospital visiting after two and a half hours of calling where no-one picked up the phone. I was sitting outside the locked ward door calling the ward number, in tears, when someone passing through let me in. I wanted to see if she'd died during the night, not unreasonable given her condition. The communication with family during her last stay was terrible, I had four days where I couldn't find out which ward she was on, what she'd gone in for and I couldn't visit. The only access was by phone and no-one picked it up. I was so wrung out that I never made a complaint, I couldn't face the "how did we do" forms after she'd died.

MereDintofPandiculation · 31/05/2022 08:39

@Words, I really have no idea what to say! Is she in a care home r a nursing home? What does her care plan say? My dad’s says he wants to be treated , hospital if necessary. The fact that it says that must mean there’s an option not to be carted off to hospital on the slightest whim.

OP posts:
Marylou62 · 31/05/2022 08:25

notaflyingmonkey · 06/04/2022 19:30

Just checking in to pass the gin around (with a generous hand).

And to say that I noticed someone upthread saying about sitting in car parks crying. I thought that was just something I did - I seem to be so task driven, that if I don't get out of the car immediately on turning the engine off - that's it, I will sit and weep.

I'm tearing up at this... I was in the car a lot yesterday.. So lots of tears... But plenty of tissues and onwards and upwards.. Apart from when I was overwhelmed and on entering the ward. (with no visit booked because no *body answered the **phone when I called in between all the other calls taken and received trying to sort out my DDad eye appointment, diabetic clinic, urology, foot lady, meal delivery etcetc.. All the while my dad is being difficult and resentful about me 'taking over' about calls from my brother about mum.. I was just about to hand over the phone! ). So I was stopped at the reception and asked if I had an appointment... I just dissolved.. Couldn't help it, couldn't stop it... They let me in... Luckily mum was asleep so I just held her hand and let the tears flow...

Words · 31/05/2022 06:20

Hello Everyone

Occasional visitor here, and back for coffee and cake ( lemon drizzle or coffee and walnut please.)

Mother, 91, frail, Alzheimer's, DNR in place, in care home. Has been ailing for a while, having episodes with varying degrees of severity of being hard to rouse and not responding to staff. Possibly mini strokes. When this happens, it ends up in her being transferred to hospital to be checked out, with endless ( up to 36 hrs once) waits in a and e.

Her local hospital is diabolically bad at communicating anything, so this results in days of highly stressful radio silence. It's almost impossible to get through either via the switchboard or directly to the ward.

Latest episode was on Sunday. It didn't sound too bad, her obs were ok, but... abundance of caution ( otherwise known as back covering I suspect) kicked in and off she went.

Call from care home some hours later. Sorrowful tones. She was being discharged on palliative care only as nothing radically wrong that they could tell. Docs thought she was approaching the end.

Although sad, this news was rather a relief. I feel very strongly it cannot be in her best interests to be continually ping ponged around in this way when nothing concrete will be gained. She needs to be in the comfort and familiarity of the care home, surely, and what will be, will be.

Imagine my surprise therefore to receive further call some hours later from an on call doctor in another far distant hospital ' as you know your mother has been transferred here for scans and assessments...' Shock. She had no knowledge of previous discharge decision. I explained my feelings and she promised that the consultant would call me in the morning to discuss, and that nothing would be done until then.

Next morning dawns. I have a call from a research clinician at the hospital seeking my permission for my mother to take part that day in a study about the benefit of regular teeth cleaning in elderly stroke patients to prevent aspiration pneumonia. Angry

I refuse permission, explain the position and ask if she has any clue what is going on. She says she has been told mother is due for urgent discharge that day. Excellent news. I ask them to tell me when she is on her way back to the home, and I call the home to expect her back. They tell me I will be able to visit without an appointment, and will put all the arrangements in place re equipment etc.

Hours pass.

I call the home. The message about her potential discharge has not been passed on, so they are not expecting her. They ring the ward and by some miracle get through.

They are told that Mother isn't due for discharge 'just yet', and far from being on end of life care, is alert and having physio to prepare her for discharge.

Today I will speak to the care home manager and try to get an urgent call with the GP practice to try to stop these constant admissions if possible.

The communication failures at the hospital trust will not be resolved anytime soon, so I need to tackle the local decision makers instead.

It's all completely disgraceful.

TheIoWfairy · 30/05/2022 21:04

@Marylou62 I hope things get a bit better for you soon. These times are very tough.
@countrygirl99 let's hope she wrote something intelligible on the parcel and your fleece gets home. Otherwise you'll be treating yourself - but a replacement for a handy item of clothing is never quite as good as the original Sad
My DM is behaving relatively well this week but I'm currently being tormented by my teenager. Not only am I a bad daughter but I'm also the worst mother - ever!!

Marylou62 · 30/05/2022 18:09

Knot..you are so right.. it took a crisis for him to agree. I visited her today and had a little cry on the way over what I have lost but not lost..She is actually ready to be discharged (up walking well with a zimmer! day 4..)but can't go back to the other home so the ward manager said he's working with SS for a new home..She won't be coming home..She was asleep but smiled at me and we just held hands.
Dad has been very poorly today and has another UTI . and grumpy with it! I'm meeting my oldest friend locally for a chat and probably a cry..x

Knotaknitter · 30/05/2022 16:39

@Marylou62 You really do have so much on your plate. It's a grim situation but not one of your making, hopefully your father has realised that he can't go on like this and that she should not be discharged back home. It's been said so many times here that it takes a crisis for anything to change. Your father has coped with this for two years but that was his choice, he did have other options but he chose to keep on doing what he was doing. This is probably the time where someone else needs to look after mum so dad can look after himself.

All we want is for our loved ones to be happy and safe and the current situation isn't working for either of them. Something has to change.

countrygirl99 · 30/05/2022 16:32

@thesandwich sadly we haven't had a regular postie for a couple of years so they can't be expected to notice. Just got to keep my fingers crossed. Good job she was spotted coming out of the PO or I wouldn't have phoned until this evening by which time she would probably have forgotten she had been.

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