Responsibility for Elderly Parents? Support thread right here!

[Needmoresleep]

Several of us are on the same journey. Some more difficult than others, some longer than others, but none easy. Feel free to share tears, rants or laughter with others who will understand.

That clock looks good too - shame they are all so expensive!

I am going to have a meeting with DM and the manager of the Care Agency next week when I go up to DM's as quite often she is being quite obstructive when the carers come and then gets agitated.
She originally agreed that they could come to do some cleaning/take her shopping and help her sort stuff, but when she is having an off-day she hovers over them and tells them not to touch stuff, etc. I wonder if getting her to agree a list of things they can do might help?

twentyten, it's funny you say that - my DM seems to love it when her male gardeners (it's just a terrace house sized garden!) come, and when the council man came to fit stuff, she seems to trust men better which is strange as she got divorced 40 years ago

I'd like to thank you all for your support over the past months, both on this thread and on others I started.

My MIL passed away yesterday peacefully in her sleep and is now out of pain. For that I am very thankful.

I'm just popping back on here to wish you all luck with your elderly relative and hope you all get some respite and help.

Oh rainicorn

Hello all! May I join your thread?

My Dad has recently moved into residential/nursing care. He is 85, and as sharp as a tack, but after a brief visit to hospital last year, things went downhill, and he pretty much lost the use of his legs. My Mum struggled on with him at home, but after six months it was beginning to show on her, so he has moved 'inside' at the care complex where they live.

My Mum has a myriad of ongoing health problems - all the biggies including Type 2 Diabetes (not very well controlled), on Warfarin therapy after having had clots, right heart failure, high blood pressure, a very large hernia which is inoperable. I joke with her that she is going for 'full-house' on the form thing you tick at the dentist.

I am early 30's, with a toddler who is soon to be two. He has very prem, and we live 50 miles away from my folks. My husband works from home usually, but at the moment is doing a lot of travelling as he is on secondment.

My brother is disabled, and lives in a flat near my Mum. He is able to help Mum by cooking her meals in the microwave and putting the bins out, but I'm the one everything falls to.

I try and visit twice a week - mainly because I think I need to. But golly - it's hard work! I find it so difficult having a toddler in tow, doing her cleaning, dealing with their finances (I have both types of POA), visiting them both in one day, and generally staying sane.

My relationship with my Dad is very good. There was a major blip when I was younger, but we're back on an even keel now. My relationship with my Mum and my Brother is complicated. They both have ASD, and while I try very very hard to take this into account, I just get so frustrated that they don't change and look after themselves properly. I know, that's unreasonable, but it's something I have struggled with ALL my life.

I guess I'm joining the thread because I'm finding everyday life very stressful at the moment, and I think I'm sliding back into anxiety and depression. My Mum has recently had a stay in hospital, and it's very clear that she is a walking time-bomb. I feel so frustrated and angry about this as it's as if she doesn't care that she would be leaving my Dad and us behind. She just carries on regardless.

I have ongoing issues with being the 'normal' one in our family - a phrase I hate using, because I'm not normal either! And being the one who has to do all the work.

Oh - and to cap it all, I might - just might - be pregnant again. How on earth will I cope with all this?

Anyway - that's me. I may not post much - don't have a huge amount of spare time these days - but thanks so much for your virtual support (which is actually real support) in advance.

Hello signora. So very sorry to hear your story- and you are very welcome. Loads of experience and support here. You have so much on. What many of us have learned the hard way is we have to look after ourselves and our dc and dh- and get support and help for our parents. Rant away here- lots of understanding

Hello! Another joiner and a long term lurker. I was kind of hoping not to have to lurk on the elderly parents board for some time after DF died a yr ago but fate has now intervened and DM has now had a stroke and been in hospital for almost 3 months. DM is now delusional and paralysed on one side. The doctor today was talking about DOLS, does anyone have experience of a parent on one of these?

I was also wondering if anyone had any suggestions for games or easy puzzle books to keep DM entertained in hospital. She was mentally sharp before her stroke but now finds even simple quizzes (I found one of DD age 6's word search) difficult and loses interest. It's been so hard seeing her deteriorate overnight.

Hello Signora and Melfish, welcome.

Signora - I agree with Twentyten about prioritising you, dh and dc first. I'd reduce your visits tbh and engage a cleaner for your mum. It would be worth looking at getting some counselling to help you deal with your mum, and put her health/behaviour into a box marked 'things I can't change'. I know others here have found counselling around the care of elderly parents really helpful.

Melfish, is your mum better with numbers than words perhaps? My mum was able to keep doing very simple sudoku long after she couldn't do anything with words. Would she like a photobook with simple text perhaps?
My mum gets a lot of pleasure from toddler 'press the button for music' books, which was something I'd have never given her (she appropriated one bought for my brothers son), but she is pretty impaired now.

Its all a bit hit and miss really - I tried a rag doll with my mum (unearthed one of my childhood ones made by her mum) as I thought she might like fiddling with it, and it got pretty much just thrown at me. She only watches Dads Army on TV, which she hated before she was ill.

Rainicorn , I'm really very sorry

Welxome Signora and Melfish. My Mother was going tk have a DOLs a couple of times but it didn't happen in the end. Bit bleary eyed at the moment but agree on prioritising your children.

End of an era for us. Just woken up and tracking my Mother's flight, she is currently not a million miles from Afghanistan by the look of it, on her way to Thailand. She set off yesterday on her final adventure, 50 years to the day she married my Dad.

Goodness knows what state she will be in when she arrives but she was desperate to do this and see her new Grandson. It wa unthinkable even just a few months ago as she was bed bound but thanks to a truly excellent physio she recovered enough to do this. She will be staying in a CH over there and if in time she loses her ability ti speak English will be able to go to a German speaking place with one on one care.

She's flying over with a Nurse who ivolunteered to make the flight instead of my Brother doing it, which he wouldn't have been able to do . Pretty sure she will have earned every penny of her fee by the time they arrive. Opportunity presented itself Sunday before last and it has been a lot of organisation and planning to make it happen but we have.

So that's a parent abroad for both DH and now with only my Dad remaining in the UK He is coming down with his partner this weekend which I'm looking forward to a lot and is well timed.

I'll still be around but I've officially come ti the end of being a Carer, which I worked out has been going on in some shape or firm witb My Mother since 2007.Thank you all for the tremendous support I've has the last couple of years, especially the very dark days of Sumner 2013

Hi everyone
Just dipping my toe in this thread. I care for my dad who has mixed dementia, vascular and Alzheimer's. He's only 71, but has been suffering since he was 62. Obviously his condition has worsened in that time it he still lives independently with one carer visit plus me, every day.
I'm very lucky that dad's sister is local and wonderful and only a very young 60, so she visits to help lots too or I'd never have coped. My dh is also great at giving me a break and "doing dad"!

However we've reached the stage this last 8 months or so where I don't feel he can live at home alone any longer. We have an annexe in the garden that we are almost finished upgrading to give him more space and he will hopefully move in in4 weeks. I say hopefully as I've no idea how it'll go.
Help and support is very hit and miss in our area, a real battle to even get someone to speak to and return calls. Sometimes I'm so worn down that yet another hour or chasing is just too much. It'd be nice to get a all back, yknow?
I work full time and have 2 children at home and an older dd who lives locally. Permanently knackered and brain whirring - thank god for phone reminders and synching calendars-nothing would happen here without these!
That'll do for now. I hope to keep up with everything but don't have masses of time, but get the feeling there are a few of us in similar situations so hope I can offer a supportive ear if nothing else.

Welcome DooWhop and everyone else who has posted recently. This section is so sad.

Having someone with dementia living with you, even a father, is very generous. I understand about the hit and miss care. My mother is in very sheltered accommodation with 24 hour warden and carers coming in, yet I still get my share of phone calls with problems that can't really be solved from 100+ miles away, and find I need to have a good inspection of her flat each time I go down. (It really annoys her, but often there is no dirty laundry in the laundry basket, no toothpaste, and milk fast becoming cheese in the fridge.)

I am lucky in that one day the manager will phone me and say my mother is no longer "safe" in that semi-independent setting. At that point she will have to move to a home, but it won't be my decision but the considered opinion of a professional, who has no interest in loosing a resident who pays her bills on time. I don't know if you have read Oliver James "Contented dementia" book. I found it flawed, pushing a specific approach, but it also had some good ideas. One is to set a tipping point in advance. So you might decide now that you will not be able to cope when, say, he is incontinent, or needs physical lifting, or starts wandering. In short when he is no longer safe. Write it down, and then when that point comes, and sadly it will, you will know you did what you could.

A much better book is Hugh Marriot's Selfish Pigs Guide to Caring, which acknowledges the different, and not always saintly, emotions that ordinary people, who act as carers, will feel.

My mother remains pretty amazing. She can't cook, change channels on the TV or recognise her grandchildren, but can fool most people most of the time. My in laws are spending the week in the flat we bought nearby and it was impressive to see my mother converse normally and credibly. It was also interesting to see my MIL not understanding and asking complex questions that required an informed answer, something I would not never do. She got some great answers, albeit complete fibs. If it weren't for the repetition of one anecdote she would have passed with flying colours. DS and some friends are going down today for a post University exam holiday. I'm not sure if he would have visited but I have had to give him some stuff to leave for the carer. I'm not sure what his new girlfriend will make of my mum.

Needmoresleep, that's really interesting. My DM appears to others much worse than she actually is most of the time - she can cook, change channels and still knows everyone, but can't remember words for the simplest things and having a conversation is pretty difficult, especially on the phone. It will be really interesting to see what comes out of the Memory Clinic assessment!

Signorita, it sounds like you have a lot to manage - twentyten sounds right with her advice.

Melfish, what is DOLS?

DooWoop, that is a big step, good advice on this thread.

Oh my goodness SPT it really is the end of an era. I ve had a couple of glasses so I ll be honest ( in vino etc) I never believed your bro would actually deliver on the Thailand plan. It s good to hear your dad will be visiting and. I hope you find his presence comforting. I guess t must be bitter sweet- you have done so much and ensured your mother is safe, and got your brother engaged in the whole thing. But as everyone knows, it takes its toll.
Dad's set up is stll stable ish: living with bro and all day carers. My role has been an administrative one for the last year: paying bills, managing his rental property, making sure his home is not squalid and being available to support my brother. I live in a certain amount of fear of a few things: dad deteriorating and no longer being able to stay at home, losing comtinuing health care, bro having another psychotic episode. Along the way I have learnt to handle uncertainty, faced down shame and embarrassment when out and about with dad ( survived him entering people s homes and explaining to them he has AD, being screamed at and jabbed wth a fork in a cafe, " losing " him on a beach AND losing DS1 at the same time, walking out of a care home with him and a suitcase because the manager said they couldn't t cope etc etc). I have grown an extra layer of skin or three, and I know i have done my best, as I hope you know SPT.

May I ask anyone reading this thread to read my post about my step father. He has asked to join my mum in her care home and am looking for any advice from anyone with a similar experience. Sorry if I have broken any rules, but he has just phoned me and I am a bit shocked.

SPT, I too thought your brother would never actually have your mum over there. I very much hope she is happy there.

I've been watching Dementiaville on C4. It was a bit of a stark reminder of how bad my mum has got tbh.

CMOT, same here. Had another tricky phone call with her today

Oh dear, do you want to talk about it?

My mums first symptoms were word finding issues, and nouns in particular. Her MMSE score wasn't too awful, but her MOCA (which looks at recognition and language) showed severe impairment, so it is important that at your mums memory clinic appt you tell them what she has problems with.

Spt so it finally happened. Well done for getting through all this. The end of an era- exams over too? I imagine you almost don't know what to feel. You deserve to get your life back.
Had a so can't recall all everyone's details- but sending a to all and wishing you strength and peace.

Really sorry to hear that BTM

To be honest I don't think Brother thought he would pull it off, it was a chance meeting with the Nurse that swung it. I pushed quite heavily for it once she appeared on scene as don't think she will settle without him and situation was doimg no one any good. He said earlier that the taxi driver asked how long she was staying and it dawned on him it was forever.

Tense moment earlier as Nurse got luggage but lost her, all came good at end. Initial report is she inhaled her dinner, fell asleep on the toilet and had to be rescued, loves her room and is tired but very happy, he sounds happy too. I really hope it works out for them and she does settle finally, time will tell.

Bob I think you have done brilliantly with your Dad, we all have done our best in here, in the face of some very difficult decisions. I have a touch of something akin to survivor's guilt and feel bad that I get to effectively walk away. DH has meeting with siblings next weekend though, his Dad firmly in grips of Dementia. The live in care for him has gone well but think money going to become an issue.

Twentyten exams are over, all done your end too?

and to you all.

CMOT, thanks - that's good to know. She had a stroke about 5/6 years ago and it "only" affected her speech - word-finding and pronounciation, which she worked hard on improving and it did improve, but has now dropped back to being really poor. Mostly nouns too, I think so I will tell them about that. Memory is also an issue now - hopefully the assessment will tell us how much of an issue!
CMOT, what other symptoms did your mum develop?

SugarPlum, glad to hear your DM's arrival is all good - I expect it will take a bit of getting used to not having to care for her. You have done your share - don't feel guilty And good luck on your DH's meeting about his father.

At the beginning, she had personality changes - she had always been an incredibly calm person, and started getting quite angry at times. Then her social skills came off, and she'd say whatever she felt like.
And its gone on from there really.

Ah, yes. DM is getting much angrier at times. With the carers, sadly. She doesn't swear as much as me but she has told them to go to Hell, and the like.

bigtillymint I think DOLS is Deprivation of Liberty Safeguard- seems to be so they can 'detain' mum if she tries to leave (no chance, paralysed on one side, cannot propel the wheelchair herself). It's been a bit of a shock for me as Dad's strokes were quite mild but numerous- it was progressively crap rather than instantly crap which is what my poor mum has had.
Mum seems to have created an imaginary world for herself and is not keen on reading, puzzles, anything really but I expect her imaginary world may be a comfort to her and rather entertaining as reality is enough to make you depressed.

Melfish, thanks for the explanation - didn't know that existed! It must be a big shock for her to have gone downhill so quickly. Have you seen Dementiaville? Lots of the people featured seem to be in their own little world and they advocate both trying to "join" them in it and trying to build on old memories to connect with them. It's very sensitively done.

Though my Mum is well into her 80s, she still lives alone and is very capable of looking after herself. I'm nowhere near the stages some of you are going through but I just wanted to say that you are all brilliant. It must be such hard going, especially if you have little ones to look after. So, medals and a massive round of applause to you all.

Thanks Voluptua. This is a good place to find support, and unlike some other parts of mumsnet, it is all about the support not scoring points, feuding etc. Good to hear about your mum. There are some very capable, amazing elderly folk out there and it's good to be reminded. A couple of weeks ago i spoke to my grandfather's sister, she's 90, widowed no kids, lives alone. She'd just done the 3-4 hour drive from Paris to her late husband's family's little village house, and utterly has all her marbles. It was so nice to talk to her.