Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

@GnomeDePlume hoping that the end is well managed and as peaceful as possible 💐

@GnomeDePlume
Thinking of you 💐

Thank you. I dont know if this is the end but I feel that starting morphine to make DM feel more comfortable rather than as a specific pain killer is significant.

@GnomeDePlume maybe the only silver lining of a long drawn out decline is that for my dm, the very last step seemed small and easy. I hope it is the same for your dm. 💐

Yes. It does signify that the end is approaching now, although it could be days rather than hours. Nobody can tell.
How is your brother coping with the morphine being started?

Sending love

@TheBroonOneAndTheWhiteOne DB's not happy but not prepared to actually do anything. I think he sees morphine as giving way, not fighting to the end either by DM or by us.

Well.
As predicted.
Mums on her way back to the hospital 🤷‍♀️
My sister is taking her.
Vomiting and black diarrhea

@GnomeDePlume thinking of you and hoping that your DM is more comfortable with the morphine.

@Raven08 oh dear, hopefully they can find the source of the bleeding quickly.

DF carer reporting he refused breakfast and his breathing is worse today so I am hoping it is just a blip. DH is going to check on him. I am exhausted, we had five extra excitable teenagers in the house last night for DD2's birthday. Luckily they have gone shopping in town so that my ears have a break from all the shrieking.

I am sorry @Raven08 but as you say - entirely predictable that your DM has ended up
so quickly back in hospital. I hope they find the issue and don’t attempt to discharge her without a proper package this time.

@GnomeDePlume thinking of you, I remember how supportive you were on here when my DM died. You are in my thoughts. To everyone else navigating this, I am sending you good wishes.

Thanks.
That's what I find so distressing...it's SO predictable that this would happen.

Can I just lower the tone with a bit of a moan about other people.

I went to hairdresser, have been going to same one for years so he knows everything that’s going on. Today he says “So are your DPs any better?” Me “What do you mean better, they have dementia they aren’t going to get better?” “Well are they getting better care maybe, more carers in.” “No they refuse any additional paid for care and things won’t get better until they go into a care home, which they refuse to do.”

Anyway at that point I changed the subject as I felt I was being unnecessarily unkind. But this is part of the issue. People think there is some magic solution to this and refuse to accept that DPs will continue to decline until they become so bad they will accept the need to go into a care home or they die.

I am feeling a bit better ( if guilty) because I am leaving DH to do the majority of the hour each way visits and I have started new part time job which keeps me busy and out of the home. But no DPs aren’t ever going to return to the people they used to be or improve in any way. I guess it’s too depressing for people to properly comprehend, or maybe I need to be better at papering the cracks in conversation.

@rookiemere
Good grief...what a stupid question! 🙄
My dm is not going to get "better" either.
In the past few years, every hospital admission has caused a further decline in her health and cognitive ability.
And will continue to do so.

I remember having an argument with a man who wouldn't accept that dementia was a cause of death, not to mention a progressive and very serious disease.

I think someone on here posted about this a while ago, but the charity advertising for dementia doesn’t help with images of frail but well coiffed smiling elderly people usually pointing at some jolly old photo or listening to Vera Lynne because clearly all demented people love the same type of music.

Instead DM sits on her bed with a vacant unfriendly stare obsessing over paperwork and shuffling round the house with her nightie hoicked up. DF could probably be encouraged to reminisce but seems to want me to give him a free pass for not doing enough for his DPs when they were elderly ( lived in another country and died much younger than he is now). The most depressing thing about each visit is I know that is probably the best I am going to see them and they will have declined further ( but still of course deemed to have capacity so can live in as much squalor as my conscience dictates and a meagre amount of paid for cleaning they will allow).

But nobody likes realism, it took me a long time to realise that the only way forward was to protect myself.

I think the problem is that dementia cant be cured. It cant be managed. It just has to be coped with. And it progresses. There is no magic formula of care and activities which will make it better or even halt it.

Until you have experienced it, recognised it, you dont understand just how awful it is and how helpless you feel.

Morphine not yet administered to DM. Different nurse, different view. DB happy.

So.
I'm staying at home.
I offered to take her in earlier, that was turned down.
Siblings are there. She hasn't seen a dr yet.
I keep thinking back to a few years ago when she nearly died.
I did a 20 hour a&e shift sat in chairs alone. It was horrendous.
I told them how ill she was, how worried I was...and my brother went out drinking with friends and my sister "suddenly" became ill after I asked her to come in for a couple of hours so I could go home, shower and get something to eat.
Dh had to come in and bring me a tea and a snack which i ate 8n the car in the car park (everything closes overnight and vending machines were empty)
I've never really gotten over their utter callousness that night, tbh. It pretty much ended our relationship as far as I'm concerned.
I was totally alone and
I really did think she was going to die (she nearly did)
So I'm staying at home. I'll go in first thing.

I would stay at home too @Raven08 you have been there a lot for your DM with little appreciation or help from them. Maybe after a night on plastic chairs in A&E they might see exactly what that entails. If they ask you to come in and relieve them maybe have a convenient migraine coming on.

Don't blame you @Raven08

Oh absolutely don’t go to hospital @Raven08. Your DM has enough support with your siblings there and surely the whole point of family is to try and share the load and as you’ve been doing most of the heavy lifting until now, this is definitely an occasion to step back.

@Raven08 definitely don't go in, you've more than done your bit.

Rollercoaster continues here with DGM. We thought there was a plan for her to be discharged to a nursing home. That was the recommendation from her consultant. However, the discharge team have said that can't happen and the only option is home with a care package. DGM been in tears because they won't listen to her about her physical symptoms and not managing at home before this admission and they've just said they think she has anxiety. Discharge liaison person refusing to talk to us because "she has capacity" even though she's given consent and been incredibly rude to DF. Saying they don't care what the consultant says, it's their assessment not his that counts and they say she doesn't qualify for intermediate care and must go home and nothing we can do about it.

Complaint letter been emailed to PALS today! We are now terrified of a repeat of the unsafe discharge that made her so ill last time.

@CrazyGoatLady
So some officious twat knows better than a consultant?
Ffs 🤬
Look where we are...mum shouldn't have been discharged home and blam there she os, back in a&e 4 days later.
Madness

They're shafting themselves and costing the oh so precious NHS more by doing things this way, that's the maddening thing isn't it @Raven08 !

The horrid officious cowbag said to DF that there's not an endless pot of money here you know. Well no, because you keep skimping on things to save a few quid and then end up costing the NHS far more in revolving door admissions!

I forsee a pals complaint on the horizon..
But we aren't sure what mum told the drs..dhe is usually very keen to get home, no matter if its a bad idea 😕