Caring for elderly parents? Pop in for support/advice/a bit of a rant...

[picklemepopcorn]

Pace yourself, it's a marathon not a sprint!

This is a safe place to offload- don't be embarrassed about how you feel. No judgement here...

There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!

yolo great advice from others and a huge hug from me.
Agree, withdraw and look after yourself. But take care and don’t do anything rash. The marathon isn’t over unfortunately. 🌺🌺🌺🌺

Yolo is it possible they are desperately talking shite in order to make you feel compelled to stop DM from moving to them?

Now making a guess at the deleted remark....

Hope everyone is okay today

After explaining to my parents' lovely neighbours that parents didn't want to be disturbed, they knocked on the door yesterday. Well intentioned I know.....luckily dad was upstairs resting and it's too a big a task for him to get down the stairs so he didn't have to say hi. He doesn't feel able to see people at the mo, understandably.

Sorry, nothing dodgy. There was a PA snarky remark in the post about someone who could, at a push, find it online, so thought better of it.

Oh I see
Hopefully lovely neighbors don't read MN, lol.

A truly awful weekend. Since neurologist reduced one of mum's parkinsons drugs last Tuesday it's like she's been in off mode and has become disabled because her bloody legs just won't function.

I rang her Saturday for a welfare check-in but she was stiff, stuck, half naked and getting colder and colder. Whizzed round to sort her out. Saturday evening due to go out. Got half way there had to go back. Stiff, stuck in the chair (where I'd left her at 1pm) and hadn't eaten or drunk anything since I'd left earlier. We ended up seriously considering care home options for her and I have never cried so much in my life.

Yesterday I thought that I would ignore the consultant new dosage and gave her the original dosage and it was like a light switch flicking on. She was able to walk, lift her head and open her eyes to actually see.

I rang neurologist secretary this morning and he's going to add her to his telephone consultation list on Wednesday and she then recommended I get her up to the gp ASAP to get her meds increased. So got that sorted this morning and another 5 days of antibiotics for a UTI she's probably had for months and months and was most likely contributing to her hallucinations this summer as much as this particular med was.

Everything is such hard work. And I'm so hopelessly out of my depth. I'm meant to be at work today but my boss has been wonderful. So this afternoon I'm making my youngest son a birthday cake as he's turned 15 today. Poor boy only got one present (still an expensive one) but no little pile of extras I love to give (chocs, socks, dvd etc) as literally have had no time at all in the last week except to look after Mum.

Please pray and cross everything that the increased meds give my mum back the use of her legs and I get my life and my mum back. Though this episode has made me very fearful of what the future may hold for her. And me.

Can i say blue that it doesn't sound like you are out of your depth based on what you're doing. I appreciate it may feel like it though.

Could you have the conversation with your mum now about moving somewhere there is more support available? It might almost be a blessing in disguise?

Blue, I'm so sorry you both went through all that.

Re the UTI, that was one of the issues experienced by our elderly neighbour here (not sure if it's on this thread, we used to help out a neighbour who has been transferred to a home). The NHS seem to have a thing about not giving antibiotics for UTIs now bad having accompanied her to one appointment, I got the impression the GP just thought "she's old and not remembering to drink water". Eventually she got so ill with it she was hallucinating all of one night before calling us in the morning to see if we could take her to A&E. She recovered fast with antibiotics, hope your mum does too.

Out of interest, why did the neuro reduce her dose?

I hope you get solutions ASAP.

@LighthouseSouth this particular drug is known to cause hallucinations and she'd had it increased May time (in 2mg increases over 6 weeks from 10mg to16mg) as her mobility was becoming increasingly difficult but heat wave hit, not drinking enough and anxiety (I suspect) about my then upcoming holiday was causing her to see 'the others'. They were just shadowy figures who she didn't know and who were often up in the shed or sleeping on the sofas in the lounge but otherwise didn't disturb her.

So after a telephone consultation with the neurologist in July he decreased them by half (8mg) but she was now taking a dose less than the original 10mg dose. So mobility reduced, though she can still just function but the 'others' still around so this week he cuts it by half again. Now disabled. At no point does anyone suggest a UTI until I got a parkinsons nurse to come over week last Friday (1st time seeing a PN in 2 years!). Take her to GPs day after consultant apt and bingo has UTI. 5 day course but today still showing blood and other markers so another 5 day course and hospital can't say what's growing on culture yet so she can't have tailored drugs for that as yet.

Anyway long explanation (hope you're all still awake?) and today at my insistence she's back on 10mg a day and if I feel she needs more I'll increase it first, advise doc later.

And thank you for PP for saying I'm doing alright.

We did have a very in-depth and honest chat about her future self and housing needs. Needless to say she is very anti leaving her home and does not want to go into a home or move into assisted living accommodation either. I know that Social Services prefer people to remain independent in their own homes for as long as possible. I rang SS Friday and asked for an urgent call back but surprise surprise I'm still waiting She is in the position of savings maybe £5k over council limit so can self fund but I need to know how to organise carers etc and I have no idea how/when SS pick up bill - when her money runs out altogether?? (so how does she pay to get boiler fixed for instance) or when she reaches their limit??. She owns her own house.

I have found her a cleaner and rung local independent carer as I would like her to have someone come in 5 days a week to make her meal. She'll come to me or I'll make dinner at hers the other 2 days. I see her 3 days a week when I drop the dog round whilst I go to work (company for her - we have dog walker who goes to her house so she literally just has to chat to him and cuddle him) and I made a commitment when my dad died a year ago I would spend every Wednesday with her and we go shopping or to the garden centre and always have nice lunch out.

Mum not keen on carer idea but I feel good compromise as I will still see her 4-5 days every week but I can still have a life of my own without guilt. That's the aim anyway

blue you sound as if you are doing everything possible 🌺🌺 does she have ot stuff like keysafe etc? Attendance allowance? Age uk or carers uk can help but local ss should help too. Enjoy cake.

Wow Blue, that's a lot to deal with, glad you got that agreement with neuro.

I think you have made incredible progress blue. Cleaner and carer sound perfect - and your mum may be reluctant but at least she has said yes. I can recommend a keysafe 1000%, i have one and even at 50 it regularly saves me! Amazingly, my own mum has exchanged both on her sale and her house purchase. The stress of the move reduced my mother's memory to shreds - it is due entirely to my sister that it is happening at all.

blue sounds like you are doing all that you can , have you thought of her staying at a home for a week or two as part trial and part respite ? I had such an antiquated view of " an old peoples home " that it was such a pleasant surprise when we found a great nursing home for my Dad

@LighthouseSouth I have done this without prior agreement of neuro. I have booked a telephone consultation with him for Wednesday morning but his secretary said to get onto GP asap to get meds increased. Unless he's coming round personally to care for her he better be supportive or have a better plan!!

@thesandwich thank you for the flowers. She has keysafe as she has a call alarm (but never wears it of course) and is on maximum Disability Living Allowance (receives instead of Attendance Allowance) and has blue badge also.

I've learnt so much in past year about how painfully difficult it is to access stuff. For instance we applied for higher DLA in September 2017 finally received it February 2018. Totally unacceptable imo.

When SS finally decide to call me back I may then finally learn more about the care system but am out of my league at the moment and have no one IRL to ask as I'm the first of my friends who have a parent who has care needs.

Really appreciate your responses

@Annandale thank you. I'm sorry to hear your mum has declined due to move. That's what worries me. I'm dealing on my own as my sis is in US and brother lives 3 hours away. My sis has already sent tons of links to care homes to me as that's the only contribution she can make from so far away but Mum is adamant to stay put and I could well see a situation arising where my mum forced to move so my sister has felt like she has done something, if you know what I mean?

@billysboy yes my husband and I have already discussed me going over and staying there, particularly as she's been such high risk this past week but truthfully I was reluctant that I might never ever get to come home again Such a difficult time

Now that the move is going to happen i think things will pick up from the state they were in at the weekend. She already sounds better and could chat much more normally. I think having maximum support in their own home is always ideal imo. Would age concern helpline help with talking through the finance issues?

@Annandale that's a great idea. I'll call them tomorrow as it's probably a bit late in the day now (and the pizza's been ordered and in its way). What a week.

Blue huge and pizza of course for you. It sounds as if you have dealt with the immediate crisis brilliantly, and now need to get some more help in place for mum as well as for you. Annandale I hope the move makes things easier for you. (for some reason my paragraph key is not working!!) DM not great, still very delusional and screaming with fear, still in Princess Diana mode. Home told me today they are involving SS and MH as not sure they can meet her needs... which I understand because they are a rehab/physio centre, not a dementia one. On the other hand if she has to move again this would be the 5th care place in just under 4 months and I am not sure she would cope with that at all.

blue carers uk may be able to offer advice/ info as well yolo sorry to hear your dm is so unwell. Hope she doesn’t have to move. 🌺🌺🍷. My paragraph key also not working! Annan hope the move works out. Moving is so stressful. 🍷🍷to all.

DM currently in ambo going to hospital with suspected dislocated shoulder and large haematoma.... hope to god they keep her in overnight. not planning to go up there, DH has taken my car so I would have to go in has van and have only driven it twice and dont want to do it in the dark. Tomorrow was supposed to be MDT meeting, so guess that wont happen.

yolo no words, but a big hug.🌺🌺🍷🍷. The right call about not going. Take care.

Yolo, sorry to hear that, surely they have to keep her in overnight?

We have a diagnosis for dad. It's an extremely rare condition so I won't name it here as it could be outing.

There is medication to manage it, this is what he already takes (since his hospitalisation). but his quality of life will be this, or worse. I think he will have to go from Zimmer to wheelchair soon. Both parents still don't want carers in. I can understand it but I fear it means some kind of disaster will occur.

MDT meeting may still happen....be aware!

to @yolofish and @LighthouseSouth

My mum has had an excellent day today. Full of beans and says feels more like her old self.

Telephone consultation with neurologist tomorrow

The support I have received from the posters her has been amazing. Thank you all