The new shiny 2019 thread for anyone caring for elderly parents

[thesandwich]

Continuing the long running series of threads. 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!
And a few laughs and the odd cockroach or gin....

Hello, detoxpup. I can relate very much to what you say, especially about your mother’s low mood and saving her desperation for you. How recently has she seen her GP? Respite care sounds like a good call - it might help her crystallise her thinking about what she needs and how she’s going to arrange it.

thigh I'm doing ok. No real change with mum; sometimes she seems a bit better, other times she looks so poorly. Just feels like Groundhog day most of the time. Still hopeful of discharge just so we can do the little things that the nurses don't / can't.
I'm back in work tomorrow - not sure how I feel about that. Part of me needs to get back to the distraction of a classroom of kids but it's going to be tough as I'm so tired already. Luckily colleagues and kids are great so I'll have a lot of support.
yolo please look after yourself. It's difficult to be honest with people sometimes but you know it's what you have to do. I'm now having to police mum’s visitors as so many people are wanting to go in and see her that it's becoming a steady stream and she's simply not up to it. I've turned people away over the last couple of days which was horrible but necessary.
rabbit so sorry for what you are going through. Some great advice re getting AA and some support. A good piece of advice given to me was to try to get carers to do as much as possible so that the time you have with your mum is quality time. In terms of the mental load I triage - what do I have to deal with? what can I afford (emotionally) to deal with? then everything else. It's working for now but it's vital to give yourself moments to clear the shelves of 'everything else' from time to time.
Now that I understand the significance of cockroach (thanks yolo) cockroach to all.

Oneday I had to virtually ban visitors to dad. Even at the point where he could only wave hello weakly, people were still standing around. Annoying.

Detox what does the carer do for your mum? Interesting that your mum says she is too busy - does she have friends, hobbies etc? Sorry she is so down.

Oneday I am back to the classroom tomorrow today and agree with needing the distracion but....

Morecheerfulonica thank you - you put that into words perfectly - yes hopefully it will crystallise her thoughts and needs - she sees her GP frequently (I may be imagining it but I think even he takes a deep breath at the beginning of the consultations)

Grace yes she does have fantastic friends who phone frequently if I am at her house there will be numerous phone calls, she goes to village teas and groups but still sees noone and they are all old.........

I am going to have to go back and reread the thread to find out about cockroaches I think I've got the Teflon covered (see what I did there!)

@rabbitykins -I’m an occasional lurker on this thread and full time carer to my mum (can’t walk, full body hoisted, spina bifida, Normal Pressure Hydrocephalus etc etc etc!) My best tip if you think your mum has mobility problems is to apply ASAP for PIP mobility. There is no component for mobility with Attendance Allowance, and my mum is (unbelievably) not entitled to any sort of motability vehicle or help at all due to not applying till after 65. We self funded an adapted vehicle and she even has to pay full road tax and vat on it. Nobody-drs, district nurses, financial advisor from council, MP etc believed this until I showed them evidence from DWP.

Detox I'm lucky in that I've worked in this school for years and work with a fantastic group of people. They all know not to ask me if I'm ok but just to carry on as normal unless I ask for something else. I think I need to be around people who aren't hurting as much as I am and I need the kids to make me laugh. I've been honest about what I'll be able to do re workload and, as a department, we are very good in supporting each other in that respect.
The reality of working in an inner-city (possibly any)school is that so many of the kids I teach have already lost a parent. I'll take strength from them.
Hope you get somewhere with your mum. Thinking of you.

trockodile how do you find the full time carer thing? I'm in awe.

Detox you mean she complains she never sees anyone and/or complains they are all old people?

Oneday that is good that your school supports you I hope you have a good day tomorrow - @ your daughter's comments

Grace212 yes she complains she never sees anyone and they are old......despite there being a lot of lovely people with her

Hi Detoxpup

My mum sounds similar to yours, has been very low in mood and "can't carry on like this" for years. Pain from arthritis but generally OK health for her age (86). Her mobility is also bad, although she is ok with a rollator, but she hadn't been out of the house on her own for a few months, and then last Feb my Dad died and she was on her own.

Long story short, she is now living in a care home near me (was previously 2.5 hours drive away). She is by far the most able there in most ways, both physically and mentally, which isn't great as any activities etc are mostly targeted at residents with dementia (understandably, as they are in the majority). I think if she and dad had made the move to a sheltered flat up here a while ago she would have been able to stay there, but they didn't and she wouldn't have been able to cope with that change now.

She is not as anxious as she was at home, is safer (she is prone to falls), and of course I am nearer and can take her to hospital appointments etc. She isn't very happy, but never was, moans about everything, but always did ... So on the whole I think it has been the right move, but it certainly isn't perfect. If anyone has any ideas about finding a care home that isn't primarily for people living with dementia, please let me know (and of course I'm aware that her health could worsen in various ways, and it may be a good thing that she is already somewhere which can cope with that.)

Sorry, that became about me rather than you. But if I can help in any way, shout!

Can’t really help with care homes because we’re not at that stage yet (and might never be because for now mother won’t contemplate it) but my friend’s mother is in a home with a dementia wing. As I understand it, the dementia wing and the other wings have separate activities, so I suspect that’s what to look for, for oldies who have differing needs.

Monica, thanks, yes that's what I was hoping for with Mum's care home as there are separate floors for differing needs, but I think most people with my Mum's level of need tend to be in sheltered/very sheltered accomm rather than care homes, but circumstances have led us to where we are. I am in touch with a voluntary organisation and hoping they will be able to do some activities etc, in addition to what I can do.

Hi, it’s been a while since I posted on here, and I’ve name changed since then. Sorry that this is a long post.

I’m looking for a bit of perspective / advice. Up until November, mum lived independently at home. She had very limited mobility, and was very confused. She refused any support from social services, and wouldn’t discuss giving me power of attorney because she was “very smart”.

Inevitably, in November, she fell. She broke her ankle and has been in hospital since then. Social services have assessed her and decided she doesn’t have capacity, and are proceeding on a “best interest “ basis. She is being moved to a care home shortly - hopefully on a temporary basis.

My issue is this: she is desperate to go home. Every time she speaks to family she cries and asks why she can’t go home with carers. The only way she could do that is with live-in carers, which will cost minimum £1000 a week. I have no authority over her finances, but I think her savings would cover that for a maximum of 6 months, but I can’t have a sensible conversation about money with her.

I’m sticking with the official line, which is that once she is able to get herself to the toilet at night she can go home with visiting carers. But I feel a bit unfair, and wonder if she should just be allowed to spend the money and then worry about what happens when it runs out. But of course she doesn’t really understand what she’d be agreeing to.

Thanks if you’ve read all this! Family all live a minimum of 5 hours away. I’ve managed to get to see her reasonably often, but now I’ve got health issues of my own which mean I may not be able to travel for a while.

If we privately funded live-in carers what would happen when the money ran out? Sorry if that is a naive question!

Hello, Toofarout (on my bleaker days, I feel my screen name ought to be NotWavingButDrowning)

You're clearly in a tricky situation, especially if you don't have POA. I can understand that you want to facilitate what your mother says she wants, but that doesn't sound feasible. I don't know the detail of how it works (User[lotsof numbers] who posted earlier can probably advise) but I'm assuming that, if you had live-in carers, that arrangement could only last as long as your money lasted. I've never heard of social services stepping in to fund a live-in carer, although I stand ready to be corrected.

Ha morecheerful - that name had gone!

Just typing all that helped. If she doesn’t have capacity, she doesn’t have capacity- so she wouldn’t understand what she was agreeing to.

It’s still tough when she cries down the phone (although the nurse says she stops crying when she hangs up - takes me back to the days of taking toddlers to nursery!)

Hi all.
too sounds like as chc asssessment of your dm is vital to see if she is eligible for some funding- @hatgirl and others can explain more- age uk or carers association can offer professional advice re funding too.
It is really hard if she wants to go home- she may settle in a care home but it’s all so tough.
yolo hope the friend situation has resolved.
cickroach all!

Oops cockroach!!😳😳

detox I totally relate to what you say about your mum's low mood, I dealt with this for about 10 years and apart from getting her to see gp for antidepressants there was really very little I could do.

It's awful for the person, and awful for the one supporting them (I would fortify myself with red wine before visiting mum, have a couple while there and a couple more when I got home!) BUT you cant make anyone else happy is one thing I learnt.

I know this is not what people usually say, and also know no judgement on this thread: my mum wanted to die for many years (or more accurately, to be dead), so when she did die all I could do was to be happy for her. I did all the grieving during the awful last 5 months of her life which were a damn site worse than the previous 10 years of 'omg I hate everything'.

toofar also total empathy with your situation. god, I must sound like the grim reaper or something, but very similar situation with my DM - catastrophic fall, desperate to come home. We did actually bring her home, with private carers - total fuck up, she wasnt safe or well enough (not carers fault at all), and over 5 months she went from pretty independent to demented to dead. 9 hospital admissions, 3 different care homes, was a total nightmare. If the fall on June 7 had killed her it would have been a much better (although shocking) scenario all round.

Fuck me, I'm cheery!! so sorry all, and biggest cockroach all round x

sandwich thank you yes, it's not a prob, think she realised she was pushing me too hard, DD2 has had horrible accom probs at uni (think sorted now with vast amounts of cash but that's ok...) and both DDs have really struggled over the last several months and I prob wasnt honest enough about that. Her DS struggles enormously with the loss of his DS, so she does understand. DH has first oncology appt on Tues, and before that we have 3 days ABROAD! on our own! DD1 skiing with uni, DD2 back at uni but happy as moving, dog sitter booked, and we are fucking off away for a few much needed days of beautiful city, roughly a 2 hour bus mtg for him, and the rest of the time for chilling. AND I get to buy airport books!! go me!!!

yolo - thank you. It’s what everyone is saying - the social worker has been fantastic and in her words “ your DM is unable to form an accurate assessment of her own needs”. But, boy, the GUILT!

Sorry to hear about your other issues - am increasingly believing that boundaries are a good and healthy thing. Hope you enjoy your time away.

Glad you are all hanging in there
I’m so tired I can’t even post about all the awful things
DF is asleep every time I visit and I think has stopped fighting - so not sure why I am
Looking at other nursing options but the ineptness of SW is getting to me
My job is so full on it’s not true - I knew January would be awful but it’s only the 7th and I’m on my knees
Booked a few days away for early Feb but somewhere cheap that if I can’t go won’t be too big a loss

toofar if the social worker is saying that then my god take her at her word and make sure you get every benefit/advantage/care facility your mum is entitled to. really sorry, but you will have to be hard as nails at this point: you are not the 'daughter round the corner' who will fill in for ss failures (got that t shirt); push for a care home, and push for your input into her choice of care home. I 'think' depending on situation they should give you a choice. my mum went into one she chose on grounds of poshness (hated it), one for rehab - brilliant place, but she threw her self onto her bad arm because deranged - and one that we chose which she said she like but then fell over twice in two days. actually, all the stuff we went through trying to keep her happy was worthless because she was beyond that... god that's sad, but it is the case. So I would get totally hardhearted and kickass at this stage and think: what can she do, what services/benefits in the home can she take advantage of, what location is going to allow you and family the easiest option.

jace just stop and breathe for a day or so, it doesnt sound like it will make much difference to your DP, but oxygen mask for you and all that.

^black hole! A whole black hole.

Just posting to join the thread! My dad is currently in hospice after suffering a major heart attack one year ago. He's gone from hospital to hospice then back home, then back to hospital, home again and now hospice. He's going to be "thrown out" of hospice soon because his health has improved. He's waitlisted for a care facility as he's too much work for my stepmother (retired nurse) to care for. This past year he's suffered several strokes, kidney failure, gout... he's incredibly resilient and I love him dearly! My mum had a stroke out of the blue in October. I freaked out; I haven't had a decent night's sleep since. I'm an only child and a single parent of two SN teens. I'm lonely and often feel overwhelmed.