Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

Ange not sure if it was delusions or what bur DMs old neighbour told me that DM had spoken to her about a mam down the garden and was also saying to me about someone coming into her house and hiding/breaking/putting new things there. I think delusions are common with maybe vascular? DM has diagnosis of mixed.

Now wondering if having no siblings to share the burden with is actually better!

Angie my Mother had them , visual and auditory. She thought people were banging on her door at night at one point, that there were people in the garden, saw call me Dave in her bedroom, insects crawling out of the wall.

We were advised not to reinforce them. My Brother wanted to install CCTV so she could see no one was outside but Memory Coinic said no that would reinforce. She also told me a police car was following me because I'd driven over a roundabout. It was dark and rainy , she saw the police car and confabulated why it was following us as it was. The real reason was there was a dangerous rapist on the run and they were patrolling . She was so convincing about the roundabout that I had to go back next day and look as I thought I was losing the plot.

Another was that the Coop had a big hole in the side. There was some scaffolding in the carp ark but no hole. She remember this hallucination the next day ie. 'Oh you can't go to the Coop as they've knocked a hole in it'

Thanks for all the responses - SugarPlumTree that must have been terrifying, for you and your Mum.

CMOT - My mum has vascular dementia. I spoke to the Dementia Support Worker today - she suggested that I try to get her to see a Consultant asap - her next appointment is due in May so I might not get anything before then.

I'm going to try to speak to her Doctor to rule out any other infections.

It's happening mainly at night time so I'm wondering if it is her sight (not good) combined with tiredness?

bigTillyMint - I'm an only child too, sometimes it's easier not having to consult other people, but another body to do some caring would be good

Ange, I think you've got it harder than me - my DM is in a nursing home, so I don't have to do any caring. It is 200miles away though, which doesn't help with feeling guilty about not being able to get there to visit very often, and no siblings to visit either. But at least she has some friends who do visit.

None of it is easy bigTillyMint - your mum is probably a bit further down the old age journey than mine. I only live 10 mins away from my mum and still feel guilty I can only go once a day or 6 days out of 7!

Ange my dm has hallucinations or maybe just vivid dreams, but whatever they are she believes them. She has mixed dementia (Alzheimers/vascular) and poor eyesight.
Sometimes it's simply 'seeing' a bee fly out of the wardrobe, but often she believes somebody has wronged her. E.g. a neighbour will refuse the offer of a cup of tea, then dm believes the person actually threw the cup in her face. Makes relationships with others very tricky!

ZaZathecat - thanks for that. Funny enough my mum has taken against people because of something she imagines they did. Unfortunately it's led to many of her friends stopping visiting her.

Maybe the delusions are just part of the dementia journey. Will see how things go over the next few days.

Thanks everyone for your replies - it helps knowing I'm not the only one going through this.

I realised my Dad had frequent hallucinations when I watched "glorious opportunity" a website by a brave woman who was working as a GP when she was diagnosed with Alzheimers. She describes having frequent hallucinations and is convinced most people with dementia do too. It totally made sense, Dad would maintain stuff had happened and get agitated when we denied it. I learnt to just go along with it. I think now he lives in some borderland between dream, hallucinations and (a little ) reality. When I arrive to visit him he sometimes touches my face/ tries to put his hand through it as if checking he's not dreaming.

I think it's time I joined. I've lurked here for a while but things are going downhill.

Mum is 81 and has, among other things, chronic heart failure. Her mobility is getting worse by the week, she gets out of breath after 2 or 3 paces with a walking aid.
We finally bought a wheelchair and today I took her out in it. What an eye opener. I am ashamed to admit I had no inkling how bloody hard they are to manoeuvre. I could barely lift it into the car and then after half an hour push round a park I could cheerfully have swapped places with her.
I have LPA set up although she is mentally fine if miserable. Am about to tackle an AA claim which I should have done before now.

Is everyone else sandwiched between teenagers and elderly parents? I feel I'm just watching my chicks fly the nest in time for me to end up as a carer.

Yes teens here! But I am not a carer - DM is in a nursing home 200 miles away. Age UK were great in helping me fill in the AS form. Sorry you had to join us

Hello secret. Another sandwich here- teen dd who hopefully is off to uni this year and elderly dm(91) living up the road. When she needed a hip replacement I spent a year taking her out in a wheelchair- and I hear you about lifting it into the car and pushing!
I also echo the fear about being seen as a carer when Dc leave home. I am working hard to get other support in place - and trying to protect my boundaries. It is hard. Lots of wisdom on here- and understanding! Sorry you are here.

Hi all

Have been so busy the last few weeks and just catching up. Hugs to all who are struggling. The guilt is a huge thing. Noone can take that burden of feeling awful if you feel you haven't done enough....

Welcome SecretSquirrils, my dm has COPD and heart failure also. Hospital wheelchairs are the worst as I can't for the life of me get to grips with pulling rather than pushing! Last time we went I ended up having a tantrum in the cardiac unit as I was unsuccessfully trying to pull the wheelchair and push an oxygen trolley at the same time!

Good news here is that Mum's medication seems to be doing the job at last, and she is far more stable and wanting a bit more independence so we are weaning her off twice daily visits and going to just one visit a day... making hay while the sun shines. It's been amazing to just have a few hours to myself, though most of that has been taken up with dealing with the teenager's various issues. More amazing still is that she made it out to have a walk round the garden last week!

I have grey hair sprouting this week. I'm sure it's stress related, and just fingers crossed that mum remains in a good state so I can book a hair appointment to cover it.

Oh yes, teens here too. One with mh issues, one reluctantly doing ASs.
Just spent all night at dm's as when I turned up yesterday evening she couldn't move - and needed the toilet every hour. Knew it was impossible by early this morning so had to get her ambulanced to a&e and have just left her, finally in a ward. She was alternating between tearfulness and anger at having to stay in, and I was feeling awfully guilty because I was practically begging them to keep her in as I knew it would be disastrous for her to go home.
Just when you think things are ticking along, along comes another bloody blow.
Sorry, not very cheerful today!

Oh Zaza so sorry to hear. Sounds like she's in the best place. You must be running on empty. [flowers ]

Sorry to hear this Zaza it sounds like a real wrench. She is definitely in the right place. And the good thing is it's a lot easier to get services started up from hospital than from home.
I have a teen (since mid April) DS1 is 13! However he's been acting like a teenager since he could walk so I am not noticing any great difference (yet).
Went to visit bro last Monday. As the old timers here know bro was diagnosed with schizophrenia the same year dad was diagnosed with alzheimers, Dad having opposed any contact with psychiatry for as long as he could, so I "inherited" both problems and a house that was in a state that could have got a Channel 4 producer into a state of high arousal. Dad is now in a home since January, having deteriorated sharply (falls, double incontinence). Bro was devastated at the time, but now seems to have got used to Dad not being around. He visits weekly (the home was found by the CCG and is unfortunately 1 hr away by bus from Dad/bros house). We went to visit Dad together and he seemed content enough. I also did 3 trips to the dump, that's now 9 in all and I am only 1/3 of the way through one of dad's 2 garages, but I am going to keep plugging away. i thought bro would freak but he is mostly OK with me getting rid of stuff, except books which he can' t bear to see being chucked. . Dad really threw nothing away for all the years dementia was taking its hold, and probably before that. The rubbish in there is quite staggering. Phew, that's my update for now fellow sandwiches (and indeed all elderly parent carer/ supporters with or without kids).

Sorry to hear that Zaza. But she is in the right place and being looked after

Bob, well done on chipping away. I sympathise entirely on the throwing away front.

Here I have encountered no end of beaurocracy in trying to sort POA/bank, but the money owed to the nursing home seems to have finally gone through. Hopefully to the right account! Now need to tackle moving other savings into that account...

Welcome Secret. Zaza really sorry to hear that, hope she improves very soon.

I have 2 teens sort of. DS will be later this year and DD leaving home in June. I was reading the previous threads back in 2013 when I was firmly sandwiched between the DC and my Mother and in absolute crisis. Goodness knows how I got through it, this thread was invaluable.

Bob sorry you've got so much to sort out. That's good your Brother is fairly accepting though. How are you feeling?

Sandwich I hope all well with DD's revision.

BTM I remember being very cross with Barclays during the whole POA and trying to pay care fees thing.

I'm not feeling too bad SPT, like you I look back on the days of encroaching dementia, diagnosis, crises etc with a shudder. Now is not so bad, but not normality either ie no dependent adults to manage, although the management is nowhere near as intense as it was. I still need to mentor bro and deal with the practicalities of his living arrangements to a great extent. And of course Dad will continue to deteriorate, which is sad. But I am no longer managing the carers which makes quite a big difference.

I'm glad you're ok Bob. I guess we have come a long way and it's definitely easier without carers to manage. My Brother isn't particularly easy to deal with, though better this week. I'm a sounding board these days but he fluctuated wildly and I think may well have a drink problem.

My Mother is ok but incredibly hot as temperatures have been hitting 42 and she has to stay in her room as air con in the other building isn't doing the job. She's gone from hardly eating to eating loads apparently.

Lots in the same boat here. Nice to "meet" you all.
Mum had me when she was only 22 and I had DC later at 37 and 39. She's only 22 years older than me!
I sometimes feel I've skipped middle age and am looking over the edge at old age.
I always thought it would be dementia that got her - simply because that was how her mother and aunt both ended their days. It seems she is failing physically while still relatively sharp mentally.
She was always a social extrovert. Fingers in lots of pies, belonged to clubs, societies, drama, church etc. My sister and I (and dad) came lower on her list of priorities. Her main frustration now is the inability to go out to lunch or theatre or somewhere else every day.
Her drugs are a balancing act. Improve one symptom and create another.
I have RL friends with worse problems, and many of you lovely people, but I do feel a sense of doom about the next few months.

I totally know what you mean about the feelings of doom Secret. I resorted to a homeopathic medicine 'aconite' which I find helps a bit with that. I'm trying to carry on normally but when I wake up immediately reach for phone to see if the email has come to say she's gone .

Dad was saying the other day to try to keep on as normal as possible. I said I am but reminded him what it was like when his Dad was in hospital for the final four months of his life and he could see what I meant.

The feeling of doom is ever present. SPT, I also use Aconite. Mixed with a bit of Rescue Remedy and Neals Yard Night time tea! I know the feeling of dread when my phone pings...

Well done with the clearout Bob, mine has reached a standstill. No energy to do big clearouts anymore!

Squirrils, the meds are always a balancing act, just keep a close eye on symptoms, and make sure that the Drs are regularly checking blood for mineral levels and kidney function.

I don't have an alert for emails anymore, turned it off ! Rescue Remedy has unfortunately never helped me.

Did anyone see the Angela Rippon program on aging ? I didn't but dog walking group were talking about it and the keeping brain busy etc. They're learning Italian which has given me a kick up the backside and I'm having a go at improving my German on Duolingo and have enrolled on some more Futurelearn courses having just finished the 6 week Genealogy one.

There are a couple of forthcoming ones on Dementia but I want a break from it so doing on childhood and technology plus dyslexia and foreign languages. If I get Dementia so be it but I'm not going down without a fight !

Had update from Brother who has just been out to see her, he goes regularly. She didn't speak at all this afternoon but does seem to recognise him. She seems to be forgetting to swallow in the afternoons, though the carers do get food down her. She's got a new reclining chair and looks more comfortable in that apparently.

How are you feeling SugarPlum - it sounds like she is deteriorating a bit, but comfortable? It's such a long haul.

I spoke to DM earlier. She was again moaning - really doesn't want to be in the home (nothing to do with that particular one, I think, just loss of independence) and was saying she wishes she was back in her old house (totally out of the question) and wishing she could just die. I don't think she sounds depressed, more fed up. Another resident obviously came into where she was on the phone and she started screaming and shouting at her to go away, and then told me she'd like to kill her if she could get her hands on her
We are going up at half-term, but I'm not sure what we can do.