The new shiny 2019 thread for anyone caring for elderly parents

but honestly, £14k to die at your own choice? bloody ridiculous. My mum supported Dignity in Dying for many years, but gone none herself.

I honestly wish that when she fell down the radiator in the hall on June 6 last year she'd broken her skull catastophically rather than her shoulder and upper arm. Maybe then she could have bowed out with some dignity, rather than 9 hospital admissions, 3 diff care homes and 5 months of torment. I'm sure, in fact I know I've said it before on these threads: you would be prosecuted for putting a pet through what our oldies go through. just so wrong, in my view.

grace I totally understand you. Relief from suffering has to be the best result doesnt it? mum was so so unhappy and frightened, I had to stop visiting on oct 13 because it just seemed to make her so much worse (plus had DH diagnosis to deal with) and she died on Nov 1. That makes me feel really bad, I hadnt been in for 2.5 weeks - but honestly, her grasp on reality was so slim by then, she recognised me but was desperately asking me to save her and of course I couldnt - how could I? the suffering is so much worse than the death xx

yolo

yes, memories of dad's illness trouble me much more than his death. I've only told one friend that, I think some people might be horrified, but his death freed him from suffering.

I am so so sorry for all of you still going through all this (and for your oldies too of course). I read some posts and it brings back the whole terror/tension/nightmare of what we went through before my mum died.

I think it is really easy to underestimate how much toll it takes on us as carers, and our families too. Please, look after yourselves, remember the oxygen mask/teflon coating that you need in order to continue doing what you are doing. And if you cant keep on, there is no shame/guilt in that, that's what social services etc are there for.

Feel quite emotional reading some of the latest posts, and I think it is not grief but the remembered stress of mum's last 5 months (and the 10 years before). Dont underestimate how much you are doing and the toll it is taking, even if you dont recognise it now. Much love and strength and cockroach to you all.

Blue so your DM can make a meal, the carer doesn't do it? That's good, also good re the stairlift.

Hi all thanks for the welcome and supportive comments. To top my week off the household including me have been struck down with a heavy head cold, (this also includes my almost ex husband, making tensions more rife than usual), kids are whinging about picking their dirty tissues off the floor while I am expected to carry on as normal and serve their every need!!! 😡

On plus side while I was at the chemist for my mum I bumped into a lady who sometimes takes her for coffee and updated her on things and she has since rung my mum to take her out. Which is a blessing 😀

Thank you for your supportive words. I've just rang her. She's been upstairs on the lift on her own, which bodes well for tonight. The carer has also been and she made herself scrambled eggs on toast for her tea. Tonight will be the first night she will be alone since she had the fall / heart attack 10 weeks ago. I've practically stapled her alarm to her wrist and told her under no circumstances is she to take it off. We'll see what the morning brings.

Hi MrsCat1

What kind of help do you have? How are their finances in terms of getting help? Are you set for things like Attendance Allowance etc?

She's had a stairlift fitted (own expense) but took her a few go's trying to turn the seat with her feet / hands and I'm still not confident she's going to be able to do it in her own tonight to get to bed. yes, that was a surprising sticking point for my father. If she still has trouble, it may be possible to retro-fit a "power swivel", which means, in theory, that the seat hits the end of the track and then the seat swivels of its own accord. I don't know if the theory works in practice - we're still awaiting fitting.

When the social worker in the hospital asked me what I could do in terms of care I said nothing. Well done! You will still be the go-to person if she falls, you'll be the person hand-holding for 8 hours while you wait for the ambulance and another 8 hours in A&E. Then you'll be doing all the running around behind the scenes, all the management work. There's no way you could do all that and take on any of the "caring".

Hello all. Long post alert.

First posted here back in September when I had a crisis with mums mobility after her consultant reduced her parkinsons meds to try to reduce her hallucinations. Silly doctor. It was a UTI with a very strong hold all along.

Just got her relatively stable for 3 short weeks and the consultant rings to increase the pregabalin he prescribed in September for leg pain. I don't know why he did this.

Within one week her mobility was rubbish again, her coordination was poor, overnight incontinence. And then on 31/10 she had a fall overnight and I found her on the floor having laid there for at least 10 hours. She was very distressed and cold. She was taken to A&E where I learned she'd also had a heart attack, brought on by the stress of laying on the floor for hours and hours.

Cue the next two weeks where instead of getting better with treatment she just got worse and worse. She literally became like a zombie. Couldn't move independently, couldn't eat or drink without help. And for all her mobility issues mum had always been sharp. Now she was off her head somewhere else. I thought this is it. Dementia has kicked off. Doctors told me to start looking for a care home place.

I then thought to look up pregabalin on drugs.com as it was the only recent change. Holy shit. All the side effects were exactly like they were describing my mum. I took my concerns to the consultant and asked him to take her off it, which he said he would do but could only wean her off slowly because it's withdrawal effects can be horrific.

Well yes they were. As she slowly regained her mobility so delirium kicked in, which was a blessing really because this meant she moved off the social pathway home and onto the health pathway. This meant I could press for her to move to respite instead of going straight home.

So after 6 weeks in hospital (where I visited every single day) she moved into a respite bed and today, after being there for just over a month, she has finally come home.

She has a care package in place for next 4-6 weeks but she'll be on her own the rest of the time, including overnights.

All the tech the OT said mum would get for coming home has not come. But there's a delivery of equipment coming tomorrow for her.

She's had a stairlift fitted (own expense) but took her a few go's trying to turn the seat with her feet / hands and I'm still not confident she's going to be able to do it in her own tonight to get to bed.

I've now left her and I'm not sure what time the carers are going in tonight. I've set the alarms back up in her phone to remind her to take her drugs until the pivotal box arrives.

Trouble is in theory all this 'support' stuff Occ therapy can provide sounds great. The reality is none of it is there or set up for the day she arrives home. It all feels like a great big risk.

However this catastrophic situation has meant that now is the time to reestablish some boundaries. I want to be her daughter and not her carer. As she declined so much and so quickly last year I just stepped up until the point I was suffocated by her needs. When the social worker in the hospital asked me what I could do in terms of care I said nothing. You can not rely on me. But I only had the strength to say that to her from reading the advice on your posts.

If your still here thanks for reading. Cockroach all

Hello all. Still following with interest. Still in the process of organising LPA but though I'd tackle the issue of mum's address receiving eleventybillion catalogues a day. Most companies I've phoned up on her behalf have never questioned whether I was the account holder or not and have cancelled the mailing without problem.
Except one company! They did ask whether I was the account holder and not wishing to lie I said no, I'm cancelling on behalf of my mum (and gave her circs, etc).
" no, madam, we cannot discuss this" data protection, etc cited which is fair and in accordance with the law.
However, I then said " Oh, sorry, can we start again? I am actually the account holder after all". The account was then promptly deleted as originally requested.
Daft or what? Made me laugh a little in an otherwise shitty week year

thigh well, that's where I went wrong, then. I'm no good at hugs.

My DF does not have dementia. I'm not sure how I feel about this. Short term memory loss, inability to stick to the topic of conversation ("I only asked he he wanted a cup of tea - why is he talking about the Archbishop of Canterbury?"), confusion (the supermarket is out of strawberry jam, and it's all because Microsoft and Apple don't agree about something or other, and nothing will be done about it until the government publish their finance bill in the autumn), paranoia (he cannot have a light switch changed because the electrician will Condemn his electricity supply and Disconnect him; or EDF who own all electricity companies will Bankrupt both him and me). Apparently it's just normal old age.

thigh - how is Gummy? Haven't heard from him for a while.

I have fantastic news. The community matron came round to M&Ds today and we told her all the various problems and confusion re medication and lack of coordinated treatment. Dad is going to be under the care of a geriatric consultant at a nice, very local hospital. Hopefully that should be the end of trying to speak to endless departments and working out if one med does this or that to the other med. So fucking confusing and tiring and hopefully all under one roof now.

Took delivery of a very light wheelchair hired from wheelfreedom.

Dint well we've been sold a pup then. Hugs and lollipops only cheer up toddlers and that's the extent of my skillset.

cat welcome to the rabble. I would say buy in as much as you can re services. For instance if you are caring caring caring who's cleaning your house? And watch out for depression, it's pretty inevitable.

Long time lurker here reluctantly drawing up a seat at your table. I hope that is OK.

I am helping to care for both my DPs and my DPils. All in their late 80s and all with very serious health issues (bowel cancer, bone cancer, dementia, Alzheimer’s, almost no mobility, almost no vision). All are still at home but struggling. All this has happened in the last year. Prior to that they were all jogging along ok.

I find myself both practically and emotionally ill prepared for these final years or months and am seeking your combined wisdom. Those who have already trodden this path , what would your wise words be? What would you do differently with hindsight? What do you feel was important during these tough times?

Thank you in advance for your advice. It will be much appreciated.

actually one oddity did happen

she thought she could submit estimates for dad's tax return and that she'd never have to submit actual totals. I never explained it to her because I thought it was obvious an estimate was a temporary measure!

but yes, for a woman who couldn't read a bank statement, she has learned a lot, in a short time, and between bouts of overwhelming grief, so yes - impressive.

I seem to be getting worse at "reading" what mum can cope with

I'm trying to take my lead from her and we've just discovered that she is trying not to overwhelm me with paperwork and clearing out tasks, so isn't making suggestions, while I thought she wasn't making any suggestions because she couldn't cope!

I suppose it's good to know we are trying to look after each other, even if it does go a bit wrong!

we are seeing her GP on Friday. Even corduroy can't make my tiny mummy look any bigger! It will be interesting to see if GP is concerned about her weight.

she's done a good job learning bank stuff etc. I'm proud of her but it would be totally patronising to tell her that!

that's very profound not being responsible for someone else's happiness. I feel i am though, for everyone, is this megalomania on my part? No, it's just a standard part of the upbringing for girls in the 50s, 60s, and probably right through to today. It's our job to support people who are having a bad time, to soothe conflict, etc etc.

thigh I feel i am though, for everyone, is this megalomania on my part?

lol. I feel the same but meglomania hadn't occurred to me!

yolo okay, that's good to know it's a flat fee.

rose seems odd offering flowers to a rose but here

hi rose that sounds really hard on you and your sister - and your mum of course. everyone else is right - decide what you and she can do, contract out everything else you can, ask for a social services assessment if you can get her to agree. also look at attendance allowance, which helps pay for eg cleaners.

grace its a flat fee for the probate I think, we just hate the bloke!

sandwich that's very profound not being responsible for someone else's happiness. I feel i am though, for everyone, is this megalomania on my part?