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Elderly parents

Caring for elderly parents? Drop in for support, hand holding and whatever you need

999 replies

CMOTDibbler · 16/09/2016 19:22

It doesn't matter whether you are a hands on carer, care from a distance, or are just contemplating the future. Join us for support from people who know the struggles of becoming your parents carer - we rant, cry, and pick each other up.

OP posts:
ObiWankyKnobby · 23/01/2017 22:52

Dropping in...my DM's still in hospital (been there since 30 Dec). She's got Parkinsons, her mobility & speech is pretty dire at the moment, and she's having very delusions at night. She was telling me this tale about having to get out of bed to tidy her cupboard because the staff shouted at her. All rubbish (well, I hope it is anyway). She's been assessed today, either for a care in the community bed or to go home with some sort of extra support (if it's 'not worth' going to a rehab bed, as the OT so kindly and sensitively put it!)
I am so tired and worried all the time. Tired as I am visiting hospital daily,and worried because I just don't know what the future holds. It is so, so hard finding someone at the hospital to talk to. I am supposed to be going away on holiday in Wednesday (back on Monday), but I really feel like cancelling as I'm so worried that they will just discharge her and nothing will be in place. I've told everyone who will listen that I'm not around (and there's no other family nearby). I've got my DS and a kindly friend lined up to visit her whilst I'm away, but I know I will be so anxious all the time.
This thread is a great support - I haven't posted much, but reading everyone's stories makes me realise that there are so many of us going through difficult times! Sad

Badders123 · 24/01/2017 10:19

Been to see mum
She wasn't too bad - she actually spoke
to me anyway!
She has a dr appt on Friday and a referral to cardiology
I can't fall apart til dh gets home on Friday so i need to just crack on
Had though

ZaZathecat · 24/01/2017 12:14

Oby it's so hard trying to keep a handle on what's happening at the hospital isn't it? Someone who I know (who is more assertive than me) insisted on writing on her dm's notes that her dm should not be discharged until a package of care was in place or she would be at great risk. That way the hospital had to take the blame if they did so against her wishes. Maybe you could do that to put your mind at rest before going away.
Badders, if only they could appreciate what we do for them! Hope your dh can take some of the pressure off when he returns.

Gileswithachainsaw · 24/01/2017 14:06

Well I went to visit again.

I'm starting to think she's deliberately trying to find fault.

Yes doing your laundry means they do your "private things". You were letting people wash you in hospital why is washing pants suddenly weird.

Yes you had to wait to get some medication this morning. But waiting hours in the hospital or for me to go and get you something or the entire day fir the Dr to come out and your prescription to be ready is preferable to the measly hour you had to wait?

You complained that they have no patience. I sat and watched you take several mins to explain how you wanted your porridge to three staff members. Staff members you also made dance around with your door and window again fir several mins tilt the gap was just right

And please explain how when while wearing sun glasses one non frosted window in the roof in an otherwise nice and shady room is making it too bright fir you?

I'm really starting to think you are deliberation pretending you don't understand the accents of the staff so you can complain things aren't how you wanted them. And the chef wasn't trying to annoy you, you are new and he was just trying to find out what you would want fir lunch and how you needed it prepared in order to be able to manage to eat it. I've seen no one be anything but nice to you how are there still so many problems in less than 24 hours fir heavens sake...

ZaZathecat · 24/01/2017 14:14

Sounds like the staff are very patient and accommodating, Giles. I don't think the staff in my dm's home would be so much! Luckily (?) my dm is usually oblivious to problems other than me not being there, but on a good day she can complain for England!

VintagePerfumista · 24/01/2017 14:15

Flowers to Giles and everyone else.

All relatively quiet on my western front- Mum was taken out by her wonderful friend to the WI and the various other things she still gets taken to...though the neighbour called my cousin at 10pm that night to say she was at the gate saying she didn't live there.

She is booked into the very nice place she went to for the day, in 2 weeks for a week of respite as cuz is off on holiday. Am I very evil hoping and praying she refuses to come out? Looking forward to the week as we will know 24/7 where she is and that she is being looked after, but also dreading what she will be like on the phone during that week.

What is mixed dementia please? I don't think my Mum has had any kind of "formal" assessment since she went to have a scan 2 years ago after which it was written on her notes "mild-moderate atrophy consistent with eg Alzheimers etc"

ZaZathecat · 24/01/2017 14:18

Mixed dementia is when someone has more than one type of dementia, e.g. my dm has vascular dementia and Alzheimers.

Badders123 · 24/01/2017 14:22

The home sounds lovely Giles.
Maybe stop visits for a while? Perhaps without an "audience" iyswim?
I was going to see mum after work but didnt. So of course now have the guilts.
Hoping my sister goes to see her later but I can't control that

Gileswithachainsaw · 24/01/2017 14:41

I'll visit again then take the weekend off. I agree she probably doesn't need the "audience" they all seem perfectly nice people. Amd a few teething problems are inevitable everyone has to adjust. I know of she was at home shed he worrying about what if something happens in between the carers coming and she'd be forever calling me to sort out the wires shed knocked off her face.... and they'd be something wrong either the carers too so.....

She has to be there end of. There's no other choice and the sooner she stops fighting it ajd accepts it the better. Love her dearly and cab only hope to have half her spirit when I get older but enough is enough now.

Badders123 · 24/01/2017 15:50

Yes
I think thats a good mantra actually ....one we could all use!

Enough is enough!

picklemepopcorn · 26/01/2017 20:38

I've been trying to speak to my DPs for about ten days. They don't answer the phone and didn't respond to my email. I know they are ok, I think I'd have heard if not. I finally hear today, an email, as Mum's too tired to talk. A long list of all the things they've done this week, how exhausted she is, how near the end of their tether they are. None of those things was their first visit to their nearly four week old granddaughter. My siblings haven't responded to the email I sent a week ago.

GRRR. I'm not difficult, interfering, I don't need to be kept at arms length. Honest! It's like everyone wants to pretend nothing is happening. He has limited time left, they need help. Why push me away?

I'm getting sod all done at home, as I can't concentrate anyway. Sweary sweary swear swear!

Unmanned · 26/01/2017 21:07

Can I come back for a slight rant? Sorry for not posting with support for you all before Blush

Mum is in last stages of COPD but it seems that there is no support out there for this disease. I've lost my dad and my best friend to cancer and the help and support has been second to none but with this disease? Nothing! The hospice don't want to know, I've waited for a call back from the district nurses for three days despite leaving messages. I really don't know where to go from here - again sorry I know so many of you have it so much worse x

picklemepopcorn · 26/01/2017 21:18

That's so sad. What a shame.

picklemepopcorn · 26/01/2017 21:20

There is a group called something like fresh air? Something todo with breathing. They might help!

whataboutbob · 26/01/2017 21:25

Unmaned- It is very unfair, COPD is an orphan disease with more than a whiff of stigma (as in it's largely seen as being self inflicted). Just casting around, but if you ring your nearest teaching hospital they may have a COPD nurse. Ringing the respiratory/ general medical ward might help you find the number and ask nicely for a phone chat which might elicit some avenues for help. You have my sympathies.

LittleHum · 26/01/2017 21:40

All the 'final' things are so upsetting. Last birthday, last Christmas..... You can't hold back time. Sad

Unmanned · 26/01/2017 21:59

whataboutbob we have the COPD team involved but they just advise she walks, gets exercise despite the fact she is 79 and cannot mobilise apart from chair to commode.
picklemepopcorn thank you but we are too far gone for that x
littlehum yes - the 'final' things are the worst x

picklemepopcorn · 27/01/2017 10:02

I feel so effing useless.

Gileswithachainsaw · 27/01/2017 12:06

Oh pickle

You sound so lovely. You are not useless at all. Flowers

Needmoresleep · 27/01/2017 12:34

Pickle, you can only do what you are allowed to do. And your parents have the freedom to make poor decisions.

I was very much pushed away at a point when my mother started to fail. She would not accept help as "she could manage". She could not and it would have saved months of time if she had, at minimum, allowed me to take over her admin. Sadly it included the period when my father was dying from a brain tumour.

I did what I could, without asking/demanding anything of them. So I used to drive for two and a half hours to pop in for half an hour, as if I was just passing. I had always "already eaten" though had often "bought too much" from an M&S service station, so left some behind. I researched help and then offered to apply for, say, a disabled parking permit. When things were getting too difficult my mother finally allowed me to attend a meeting with the Health Visitor. But she never allowed a panic button, knowledge of where the spare key was kept, or details of any neighbour. She would not tell me when she was going on holiday - difficult given she loved those coach holidays where they pick you up locally and counted you on and off the bus.

Things were bad. But I could not do anything till she had a fall. I worried a lot, indeed each time she did not answer the phone. But finally decided I could only be responsible for things I could be responsible for.

This can be a long haul. Your parents will be experiencing all sorts of weird emotions around fear, powerlessness, feeling threatened etc. They may well play games, get unreasonably angry, and make odd decisions. I don't think you can do much more than be kind and ready to help.

(Other than if things get really bad, gather other family members together for a "family conference", or if you have POA start taking decisions and withstand the emotional fall out.)

somethinginthecordelias · 27/01/2017 13:14

Sadly things have gotten a bit harder here, we've lost a close family member of DW and MIL. He had a terminal illness so it was expected but it was a shock for everyone that it was so soon.

The rehab team at the home have to evaluate MIL to see what arrangements will be needed to enable her to go to the funeral and she's completely refusing to cooperate with them and insisting they said she can't go (they've said exactly the opposite - as long as they know what she needs ie wheelchair or carer going with her).

It's all so hard, we obviously don't want to push her because it is difficult but we also don't have endless time to be patient because if she doesn't let them evaluate her she won't be able to go - and we know she will regret that.

Badders123 · 27/01/2017 14:00

Oh gosh.
Some hard times for so many of you 😞
I can totally relate to the helplessness and anger you feel towards them...I could have cheerfully kicked Mum on Monday!
I'm going to the dr with her at 3pm. She won't let me go in, so I know she will downplay and lie but what can I do?
As other pp have said, you can only do what you can do.
I'm my mothers case I will only be able to intervene if she loses capacity.
PoA is basically useless til them.
So I am left in a limbo land of wanting to be able to talk to her Drs but until she becomes incapable, I can't.
So she is free to lie and downplay her depression.
Because I absolutely think Monday was a (sort of) suicide attempt.
Christ, what a mess.
😞

Needmoresleep · 27/01/2017 14:21

Badders, can you not write to the doctor prior to her visit explaining your concerns. He will probably not be able to reply, but can take your concerns on board when talking to her.

bigTillyMint · 27/01/2017 15:23

Badders, if you feel your DM is not fully capable, then the GP might too. NMS suggestion is a good one.

Flowers frr all those suffering insufferable parents

thesandwich · 27/01/2017 15:46

So sorry to hear of all the struggles.
Badders- great advice from nms about writing to the doctor.
It is so hard to stand by and have to wait for the falls or the crisis to come. It is a long haul and a huge strain to be on alert in case.
Pickle- so sorry but be kind to yourself. We do what we can.