Cockroach Cafe 🪳Autumn 2022 🪳

@OnthePiste my best friend is currently at the beside of her dying Mum and I can see the stress she's under. Sending my love. 💐

From a completely opposite POV, my dad had only been in the care home for a few weeks when he passed away in the early hours of Sunday morning.

We'd been through so much stress for so long that I stupidly forgot to change the settings on my phone to allow their calls. Mum's deaf so between us we didn't find out until it was too late.

It's not what I'd have chosen in a million years, I always imagined I would be there when the inevitable happened but I made peace with it very quickly.

There was only a very short gap between them making the first phone call and him slipping away.

I'd have had to wrangle mum and doing that and us both being there would have been midnight boggling stressful.

Dad had someone with him, they told him we were coming, I suspect the whole scenario was considerably more peaceful than had we been there on time.

I didn't cope at all with seeing my dad in the Chapel of remembrance so on the whole I think it worked out right for all of us.

In other news, having been all quiet on the Western front, I had a call from the Lifeline people at 1am. Turned out mum had got disorientated making her way to the lightswitch in the dark after turning off the tree lights, reached for the wall in the completely wrong place, tumbled over and hit her cheekbone on the coffee table.

They put in a call for paramedics and she was triaged but by 4am all we wanted was bed so cancelled the call out.

She's fine physically but the level of disorientation is worrying. She initially told me she fell at the foot of the stairs, but I spotted her bag and water bottle by the TV and she'd knocked over stuff on the coffee table so had obviously fallen there...it's nowhere near the stairs....

Sorry to hear that @MyMumhasDementia that must have been very stressful for you. Your poor mum, that is so hard for her.

I took a leaf out of @Knotaknitter 's book today and just stayed for a few hours this afternoon. I did something normal and went to my favourite gym class this morning, it felt good to be doing something else. Mum is still sleeping all of the time, I could not get any response from her. I will be back there first thing tomorrow as I have to drop my car off for a service early so I will head straight to the hospital.

I was on a plane to USA when my dad had a massive stroke in the care home.
Receiving the news and trying to get flights home was absolutely traumatic.

I arrived at the hospital and stayed with my dad for 9 nights. The hospital was amazing and I’ll be forever grateful for their love and care, not only for dad but me too.

I was with dad when he passed and I wouldn’t change a thing.

I miss him dreadfully but also dealing with my mum who is struggling with dementia and losing the love of her life. 💔

@OnthePiste sorry to hear about your mum...I hope the coming days are as peaceful as possible and you have lots of support.

Can't catch up with everything atm but hope everyone had a reasonably OK Christmas under whatever circumstances you're dealing with.

agree that they often pass when no one is there it's awful situation to be in though just waiting
in my mums care home was a very loud posh old lady who seemed to think the staff were her servants in between calling them all the names under the sun it was awful felt so sorry for them apparently they were the most awful people she had ever net they were madame and vile and needed to hurry up with her tea.
I know she cant help it but it was really awful

OnthePiste obviously if you're okay with that, it's one thing.

I did similar, really wish I hadn't.

A lot of people won't go until the room is empty anyway, I was told.

Hi @EmmaEmerald I find it draining, particularly as the patient next to mum talks to herself and her dead husband all day, repeating herself in a very loud voice. I get there in the morning about 9:30/10, have a break for lunch and then go back until 5/5:30. I've only been doing that for the last 2 days, prior to this I couldn't visit due to the Covid outbreak. I'm ok but very glad to get home. If she passes when I am not there, so be it, there is no way I could stay there indefinitely.

@OnthePiste I never saw mum in the side room, they moved her after I'd visited and she died that night. I'm not sure whether it would have been easier for me or not. I didn't stay all day watching her breathe, although I'd always thought she would go on forever it was clear that this was the end and it was also clear that she wasn't going to be present. I went for a couple of hours over lunchtimes and then I went home and jumped whenever the phone rang.

I know it feels as if each day will be the last and it might be but there again, it might not be. You need to take some time for you because you've the next stage yet to face.

OnthePiste how much of the day are you doing? I found it a terrible strain, how are you holding up?

Glad she has the syringe driver.

Thanks for checking @PermanentTemporary She is still hanging on in there. She was put on the syringe driver yesterday so has constant pain relief. This does mean that she is asleep pretty much all of the time. The care she is getting is amazing, I really cannot fault it. It is just a shame she is still on the ward as due to them having a covid infection in there, they can't move her out to somewhere quieter. I did ask about a side room but none available apparently. I spoke with the palliative care matron yesterday who was just so lovely, she says mum is close to the end but she is unable to say exactly how long she has. I've been spending most of the days there but coming home at tea time. I hope she doesn't linger for ages, for her sake as much as mine.

How are you doing @OnthePiste?

orange sorry to hear about your mum

it's Emma as usual, with a name change - there are quite a few of us but I think I am the only one on the Aged p board, for now.

I was a bit snappy with mum on the phone just now, she told me to stop looking for carers (she knows as it was discussed at her latest appointment, where to get help if we can't cope again).

I told her I would gather whatever info I needed and there was no point arguing about it. And there's a long list of stuff to do on next visit.

sending hugs to all further deterioration today by mum.in just a week hardly speaking at all and seemed very vacant and I sont think she knew me hugs to allxx more glad you father is happy guess that's a big comfort mum gets distressed when she come to a bit as it were but these moments are becoming increasingly fewer
food idea to ask manager about practicing her speech but not sure if you would be able to get through think it might have gone beyond that sadly

Sending hugs to all… especially @Badger1970 and@OnthePiste in the thick of it.
and@chesterelly1

Just catching up with everyone. Thank you all so much for your kind words on DF passing. We have had a quiet Christmas spending a lot of time with the DC, which was much needed by all as they have been too far down the priorities for a while. Arrangements for funeral under way. FIL still in hospital but has another chest infection so needing iv antibiotics and oxygen again. Social services are pushing for us to transfer him to a care home of their choosing while we wait for the one we prefer to be ready to take him so in a way its convenient and buys us a bit more time.
Big unmumsnetty hugs to all who need them.
@OnthePiste It sounds like DFs situation was similar to your DM in that although we knew he had a terminal condition the complications caused by the infections and sepsis brought the end much sooner. He didn't make it off the admissions ward on his final hospital stay. And I was concerned about that, with staff used to a high turnover of patients etc but we could not have asked for more for him. He was in a side room with one nurse doing everything he needed. They arranged for a palliative care doctor to come down and review what they were doing. We were able to stay as long as we wanted. Everyone involved in his last admittance from the paramedics to A&E staff, the surgeon who had to explain there was nothing she could do that he would survive, to the admissions ward staff, in particular "his nurse" were the absolute best of our NHS and I will forever be grateful for the care and dignity they gave him. I hope you and your DM have a similar team in your corner.

@orangetriangle Not easy but she is safe. Losing speech can be a gradual or a faster issue, it’s all so random. The old adage if you don’t use it, then you can lose it might apply. Tell the care home manager you’d like to have her care plan amended to include a few short sessions across the day where staff help her practice speech. Worth a go.
@OnthePiste and @Badger1970
sending hugs, it’s so hard

my mum with alzheimer's went into a care home a month ago at first it was very distressing as she kept asking to go home but within days she had forgotten about home
I have noticed a decline but not sure if that would happen anyway
they wont let her walk as they considered it unsafe falls etc as she was forgetting how to walk shuffling on the spot and or moving her zimmer frame but not her legs
She has also stopped asking for the toilet so how is doubly incontinent all the time instead of some of it
Is anyone else loved one losing their speech due to dementia mum can now not often answer you and looks blankly at you and when she does speak it is very difficult to understand her
She is on bed rest in the afternoons due to a bed sore and they turn her every hour
I struggle to see what quality of life she has
hugs to you all going through this it's really awful
with mum in a home although I visit regularly I try to switch off in between times knowing they will call if there is a problem just for my own well being really though it's difficult sometimes to do this

@OnthePiste I'm so sorry. Another hug coming your way.

Yes I was told she was approaching or at end of life last week by the consultant. She was 89 yesterday so a good age. If she hadn't fallen and broken her hip though I think she would have had a fair bit longer though, she was in fairly good health although very frail and suffering from Alzheimers.

OnthePiste were you expecting that?

big hug if you want it

Oh @Badger1970 I know how much you didn't want that to happen but I'm sure he will settle and be well looked after. Have a chat with the CH manager when you can to fill her in on DSiS and discuss his careplan.

@EmmaAgain22 I'm so glad you had a succussful appointment, it makes all the difference when you have someone who finally listens and acts on it.

DM was finally due to go back to her CH on Monday after the ward being closed for 7 days due to covid only to be told today that she is end of life and unlikely to survive the weekend. I am gutted that she will die on a busy hospital ward, that is just not what I wanted but I don't think she is aware of it. I've spent all afternoon there. She is mumbling to herself for hours, can't make anything out. She then opened her (glassy) eyes and stared at me for ages. I hope she knew it was me and recognised her voice. I am hoping she goes peacefully in her sleep.

Thank you all for your kind words.... this thread is a lifeline. I miss the cantankerous Dad who used to phone me 3 times a day saying that his phone/computer/TV/washing machine was faulty and I needed to go and sort it when he was just pressing the wrong buttons. And I never thought I'd say that EVER....!!

@EmmaAgain22 that sounds amazing, one good thing I've found about palliative care is that they give up on certain "rules" around medication and just focus on quality of life. I hope your Mum isn't too worn out by it all - or you!

Does anyone have knowledge/experience of using any of the 'call devices' for the elderly? Seem to be like a tablet but requires minimal skill to use them? Dad is very deaf and won't use the phone, we need to find a way to communicate with him that isn't passing messages through my mum (who for whatever reason changes the message and adds a hefty dose of spite)
Along with the deafness his hands are very bad so needs to be a one touch type thing