Cockroach Cafe - newly refurbished for the summer

[MereDintofPandiculation]

Welcome into our newly refurbished cafe. We've got rid of the Bad Daughters' bench - it was getting too small - and refitted the main room as a Bad Daughters' room, with comfy sofas, coffee, chocolates and drinks of your choice. (There is a good daughters' room - go down that corridor there and you'll find it tucked behind the stairs. It's not yet been fully furnished - we haven't had a visit from a Good Daughter in I don't know how long).

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 cockroach mes amis/amies, and may you all live to fight another day.

perhaps it will be easier with the boundaries enforced by routine. It's much easier to enforce boundaries if you have no choice.

It was much easier to say "goodbye" to Dad when I knew I had a blood test to go to. And I can see it in reverse - my son always phones me when he's walking to catch a train"sorry Mum, got to get on the train". Monster!

That's interesting Dint, about making boundaries easier. It's the reason my husband used to phone his mum from the car on his way to work and on his way home, the end of the journey meant the end of the call. I knew why he did it but I couldn't put it into the right words.

Look at that Minty, I said I'd been in A&E and you asked how mum was (she's ok I guess although her speech has gone out of the window this week). My SIL didn't manage that much concern, she waited for me to finish speaking and then switched right back to her tale of how hard her life is. It's only in this last few months that I've seen just how much like her mother she is.

If your mum hadn't have been seated that would have been an unexplained fall. Syncope - it was absolutely terrifying watching FIL blackout but when he came round he wasn't aware that anything had happened.

It’s easier on dad too. “I’ve got a blood test/meeting” he can understand, “I need to go home” is a rejection of him and his company. It’s really hard to realise that the children who once depended on you for their every need, to whom you were their whole world, now have you very low in their priorities.

...it was absolutely terrifying watching FIL blackout but when he came round he wasn't aware that anything had happened.

Very similar with mum...she could really recall if she'd lost consciousness or not.

Dad is still in hospital and still very confused. If he does ever come out it's going to be to a care home. Mum doesn't accept that she had dementia so clearly can't accept that she can't cope with a severely frail and confused old man. There is still no visiting at all so m is really struggling. I don't know if I'm ever going to see him again - end of life visits are limited to 2 and DB is the one who can get mum to the hospital quickly.

Hello All! I've come to say hello.

We are dealing with MIl and are at the stage when she has been referred to our local Complex Care and Dementia team by our GP, but she is refusing to see them or to acknowledge that there is anything wrong with her.

She is very paranoid and blames when things go wrong because she is forgetting how to do things, but we are also the only people on hand to help so we receive multiple pleading calls a day.

DH is bearing the brunt, as he is both saviour and also the evil originator of all her problems. He and I are conspiring to make her commit suicide, apparently. Fortunately she is determined not to do this.

We are the start of a long journey, I will be back!

@countrygirl99

I'm so sorry you're going through this. Sorry to ask as haven't caught up yet, but have you been told specifically that your dad is now considered at 'end of life'?

If so the hospital should relax visiting rules particularly if you get 'the call'. You may have to go in separately but an exception should be made.

This is the care home advice we referred to when Dad was int he home and they were insisting we could only visit twice a week max:

www.gov.uk/government/publications/visiting-care-homes-during-coronavirus/update-on-policies-for-visiting-arrangements-in-care-homes

Your local NHS Trust should have hospital/area specific advice as well and definitely don't hesitate to contact PALS if you feel you're being fobbed off.

It was quite clear in our case that as Dad had hung on as long as he had already the home manager was a bit sceptical about him being end of life, even though his fees were being paid on that basis.

She eventually capitulated on the Thursday and dad passed in the early hours of Sunday morning. I wish we'd made a fuss sooner.

She is very paranoid and blames when things go wrong because she is forgetting how to do things, but we are also the only people on hand to help so we receive multiple pleading calls a day.

Welcome! My mum is starting to get a bit like this. My only hope is if she's going to go down that slippery slope it happens quickly.

@MintyCedric dad isn't considered end of life yet but he admitted with delirium 2 weeks ago and he hasn't improved although the uti he had has cleared up. He has heart failure and kidney disease. He had pneumonia at the beginning of July and has not been right since. It's only a few weeks ago I was telling him off for trying to clear out the pond and move paving slabs he has always been so bloody independent despite being partially sighted and decidly wobbly on his pins. Now he is convinced "they" are trying to force him to move from the home he left 35 years ago and just rambles incoherently.

TonTon welcome to the cafe. Mum was happy to co-operate with the doctor and the memory clinic, immediately forgot about the brain scan and never grasped the dementia diagnosis. "I really must talk to the doctor about my memory" popped up at least weekly. MIL agreed to the doctor phoning her but had forgotten about it by the time he called and refused to take any memory tests. Mum's diagnosis came with the paperwork for attendance allowance and a prescription for medication that can slow the decline. MIL got nothing.

The never ending phone calls from mum brought me to my knees, I took my mobile number off speed dial because she was calling that then the landline and there was no break from it. The only reason mum phoned and MIL didn't was that one acknowledged that she couldn't tell the phone handset from the tv remote and she went back to a phone with a curly wire. MIL steadfastly clung to the cordless phone, she didn't hang up leaving the line open for twenty hours at a time and attempted to dial on the Sky remote.

Countrygirl I am so sorry that you can't get in to see him. The restrictions on visiting make a difficult situation even worse.

tonton welcome. Lots of support here.
country I’m so sorry about your df. Great info from minty

@Knotaknitter and @MintyCedric how are your mums now?

@countrygirl99 I'm so sorry your dad is in such a bad way. I really hope that things change and you are able to see him again.

@TonTonMacoute I understand exactly where you are coming from with the paranoia and with the constant phone calls. My mum went into hospital 11 weeks ago after a fall but until then I was getting a dozen phone calls a day from her at least. She was living in the granny annex in our garden but each call meant me going outside, down the full flight of stairs, down to the bottom of the garden to visit her to help her call my uncle (a call she made every day) or to turn on the tv or find her handkerchief!

I had noticed she was less "with it" since Christmas but since going into hospital she started being convinced there were arguments going on around her and then she moved to rehab (which she hates) and she tells me how nasty the staff are to her. They ignore her calls, they are rude to her, they are jealous of her etc etc.

She won't be coming home but will be transferred to a care home when a suitable place becomes available. I can only visit her once a week and each week I dread going because she is so unhappy and so unpleasant about the staff.

I have been her carer for 17 years but she has never acknowledged that she needed me. Now her cognitive abilities are fading she can not see that she needs care - most days she is using a steady with two carers to get to the loo, not even a frame. She can't understand why she can't come back home to live with me and can't believe "what I am doing to her."

Today’s visit cancelled - a carer has tested positive.

I’m so lucky that my father has always been grateful for everything we’ve done. And although he grumbles about some of the carers, he regards them as a challenge to be overcome.

@IthinkIsawahairbrushbackthere

Oh yes, the endless 'why are you doing this to me?' She also tries to drag our DS (he's 22) into the whole thing, then accuses him of taking our 'side'.

This disease is bad enough, as you watch someone you know well disappear, but when they become so manipulative and unpleasant as well, it really does push you to the limit.

@IthinkIsawahairbrushbackthere

Hi! Mum's actually been really good since Saturday. Have popped in and seen her Sunday and Monday and will go round later but spending the day cooking first as we have friends round for dinner tomorrow.

I think incidents like Saturday's seem to remind her that I actually will and do drop everything to be there for her 100% when she needs me and she gets a bit more appreciate for a while as a result!

Is there a specific home you're waiting for a place at?

@IthinkIsawahairbrushbackthere

A couple of weeks ago mum said that she was really happy and that she thought she'd reached a point where everything was working out well. Since then her speech has flown out of the window but she doesn't realise that the words she's finding are the wrong ones so doesn't get frustrated. I don't think she's following what I'm saying either, I'll giving her an opening that always triggers a rant but there's no response. She knows who I am and seems pleased to see me for about twenty minutes and then she's itching to get back into the lounge. I'm fine with that, she's had a year of seeing no-one but me and I'd rather have her enjoying someone's company rather than me trying to come up with conversation.

In your case I'd be deflecting on to the professionals, "it's not down to me mum, they say you won't be safe because X Y and Z". It doesn't matter that you agree with them 100%. It's not you that's doing this to her, it's not that you had a choice to make, it's just that what used to work doesn't work now that she needs more support. Mum couldn't fathom out how the seat belt worked but couldn't see that she'd have any problem at all driving. That was what she wanted but we can't always have what we want can we?

I don't like visiting either but I tell myself that it's only for an hour at the most and I was doing three hours a day, every day and a 14 hour telephone shift. I walk out of the door and come home to no worries, no dread of the phone, no internet searches for solutions. I know she's eating, having all her medication and there are people around her. I've gone from total responsibility to none at all and that took a bit of getting used to but you adjust.

We're waiting for a home in one of the two local homes so I can walk to visit her instead of relying on friends or buses.

We had a call from the hospital today with the news that they are extending visiting to three slots a week - still named visitors but it's something! My cousin and my daughter will now be visiting weekly. They are both so pleased be able to visit her. Hopefully she will be pleased to see them too.

Mum was grateful for the immediate help -" thank you for coming out and sorting out the tv" type thing but no understanding that she needed me to be able to stay in her own home! When the social worker asked her what help she had from me she said "She does a bit of shopping for me and cooks my meals sometimes." Good job I love her!

@IthinkIsawahairbrushbackthere

We're waiting for a home in one of the two local homes so I can walk to visit her instead of relying on friends or buses.

We had a call from the hospital today with the news that they are extending visiting to three slots a week - still named visitors but it's something! My cousin and my daughter will now be visiting weekly. They are both so pleased be able to visit her. Hopefully she will be pleased to see them too.

Mum was grateful for the immediate help -" thank you for coming out and sorting out the tv" type thing but no understanding that she needed me to be able to stay in her own home! When the social worker asked her what help she had from me she said "She does a bit of shopping for me and cooks my meals sometimes." Good job I love her!

Hairbrush Being able to visit will make such a big difference. I'm checking dad's hospital every day for news of visiting starting again. Mum phoned me this evening to tell me dad's had a fall and been taken to hospital. He's been in 2 weeks and this time it wasn't a fall😔

That is so hard. I've realised that I have got over the loss of my dad (can still cry about him at the drop of a hat and will always miss him) when I realised I have to make these decisions about mum on my own and don't need to consider his feelings. For years before he died he used to worry that it might be her last birthday/Christmas and wanted to get her something special. It never occurred to us that he would die first.

I am dreading mum forgetting that he's gone.

It was a big step for me today, I activated the finance LPA. I don't know what I was so worried about, it took me all of five minutes. I've cut mum's grass and I've called someone to service her burglar alarm, mum wasn't wasting her money on THAT and as a result the alarm goes off when the power goes off. She might not bother about annoying the neighbours but I do so someone can come and replace the 14 year old battery. I've brought the paperwork home to deal with some things I will cancel because if I have to spend twenty minutes on hold I'd rather do it from my own settee.

I've been putting this off for ages but today I felt like doing it.

I saw mum yesterday, she managed about fifteen minutes of conversation before fading to random words and hand waving. She said she was very happy, that she was enjoying having people to listen to and talk to if she wanted to and she told me all about the shopping trip they'd had that morning (imaginary but she'd enjoyed it so what does it matter?)

Well done Knot.

For me the best thing about it was being able to set up Direct Debits to pay DM's bills, as she had resisted them as being not something to trust. She would hide bills from me, or put them away somewhere safe only to be forgotten about, and ended up getting her phone cut off one Christmas which was the last straw for me.

Had a very difficult phone call this afternoon. Now they are allowing more visits my cousin was able to visit mum today. She sent me a lovely picture of her outside (the first time she has been out since August last year) and a quick message saying mum had said she was "quite content" with being in the hospital.

A couple of hours later the hospital phone me to ask me to speak to mum. She was very distressed and thought she was supposed to be coming home. I talked to her for half an hour and she made no sense at all. She kept begging me to come and get her, saying that she could not possibly stay where she was, she had no food and no way of getting any. I asked her if she was back in the ward but she didn't know. She couldn't tell me if she was in an armchair or a wheel chair, couldn't see the window, couldn't tell if she was by her own bed or somewhere else.. I could hear someone telling her everything was ok and she was muttering that it really was not ok.

She was convinced that there was a car waiting for her in the car park and no one would take her there. She said that she had seen so many people today, including the social worker and someone had told her she would be going home and she had been so happy about it.

In the end we left it that I would speak to my cousin and find out what had happened. Phoning the ward is like trying to get through to tv quiz show - the phone will ring out for 15 minutes then go dead so you have to start again.

We had had high hopes for the extra visits that they would bring her back to planet earth but it seems that today's visit has made her so much worse.

Haven't spoken to cousin yet as she has been out all afternoon and just messaged me to say she will ring as soon as she has had tea. As far as she knew mum was very happy and chilled this afternoon.

That sounds really distressing for you Hairbrush. Were the hospital able to shed any light as to whether anything had caused the change?

I haven't been able to get hold of them. The patient liaison lady told me she was distressed and wanted to speak to me but I haven't been able to get hold of them since. I will just have to keep trying tomorrow.

Hairbrush that must have been very distressing for you. It's possible that your mother has already forgotten all about it while it will continue to upset you for days. Is she more confused than is normal for her? It might be worth mentionning it to the staff if that's the case as there's always the possibility of a UTI.