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!

charlie that sounds so hard for you . Def get social services involved, because this will only get more difficult.

Am beginning to think posh nursing home DB has chosen does not want DM. They are now asking for proof of 2 years fees at around £2k a week (not inc price rises) - is this normal? This is before they will even consider assessing her for possibility of a move (which will also cost) and then private ambulance for transfer.

yolo I’ve never heard of that..... month payment in advance yes, but not that....... just what you don’t need. 🌺🌺

@ILovePierceBrosnan depressingly £350 is about right. My dad pays £22.50 per hour, slightly more at weekends, think £24.50 and then a £3.50 supplement each day for travel. They are really limited with agencies as well as they live in a small village about 10 miles from the nearest town (in any direction).

Currently my parents are doing 8 hours per day, 7 days per week - it is expensive .... and not really sustainable which is why dad would like to reduce it, which I get but I think they need the support. Wondering if live in care would be better ....

Oh and the actual carer only gets £9.50 and 19p/mile travel ....

Oh and the actual carer only gets £9.50 and 19p/mile travel ....

I appreciate agencies haves costs but £9.50 from £22.50 is taking the p

£25000 profit per year for full time care whilst the care worker earns £18000. I’d like to know what that £25K covers considering the care occurs in people’s own homes and it’s the carers own car trundling up that mileage

We are looking at a friend of a friend who is an HCA and working for the local hospital (part-time). I’d happily give her £20 an hour as it’s priceless

I live with my schizophrenic MIL and I can't actually stand her. I avoid talking to her because her lack of mental capacity, I can't cope with it.
I am desperate to move into our own place but we're really broke. She hardly showers, has a 14 year old son who my husband and I completely look after. She never cooks or cleans and he's so damaged. He was so upset one day saying she retired from being a mum too soon :(
Breaks my heart.

Taking it one day at a time is what's bothering me

It's impossible to plan anything and every day is just dread of the next day with no end in sight.

The hospital finally mentioned the word hospice today. Mum is devastated and I feel so guilty because I'm relieved. Even if he lives months, at least it's a next stage.

I urged her to take tomorrow off because he doesn't know we are there but she won't listen.

fatbrows that is so hard. do you have SS care in place? you cant do all this...

grace I totally understand the dread of the next day. That doesnt help much, but we all feel your pain. Hospices are actually really good - I volunteered to work in our local one, and it was lovely. I didnt end up volunteering there as they couldnt match my skills to what they needed, but they are really good. DB and I have taken now I think 8 days off (me, him maybe a couple of weeks) visiting DM, because visiting her is more distressing than not. When she is moved to new localish placement I will go and see if it makes a difference.

In the meantime, DH has his colonoscopy on Mon which is good in some ways - at least we might get a plan; oth, the 'bowel prep' is rather unpleasant. DD1 home for the w/e so that's a very pleasant distraction. I worry because DH so tired even though he is not doing a great deal, and pain comes and goes. Worst fear is they cannot do colonoscopy for what ever reason...

When my parents were assessed I had to explain why my DSis and I could 'only' do so much. ???? How much were they expecting you to do?

my parents have enough money to pay for a carer (thankfully) so would the assessment be relevant to them? Assessment if still relevant. It may be helpful if someone "in authority" says "you need this", and they may have ideas for coping that you haven't thought about. It's an assessment of needs, entirely separate from considering what they can provide and who's going to pay for it.

Yolo, the two years proof of funds is what we were asked for as well. I also understand that you really have to persuade social services that no one can care for the person.

In fact, as well as the note for hospice, today they asked if he can be cared for at home. He's a shell in a bed and can't even open his eyes. How they expect us to manage even if I lived with mum, I don't know.

Does anyone know, is it hard to get a hospice place? I can't believe I might have to start a battle for someone in dad's situation.

He is now on oxygen, hasn't eaten for two weeks, has no clue we are there....how can this not be a man who will be given the relief of death soon? I think they are stopping other drugs because he can't swallow. Can't drink water because he's permanently asleep and they think he might choke. They have him on a glucose drip. I just don't get it.

@ILovePierceBrosnan I know. It's outrageous. And the poor carer who is on her first day off for 4 weeks appears to have no supervision either. She has decided to resign which I completely understand and unfortunately we can't employ her direct because of the contract we have signed or we'd just cut out the middleman. God alone knows what we'll do when she leaves as there are v few options.

@MereDintofPandiculation that's helpful, thank you. Shall discuss with my sisters and will pursue this further. As with many on here no doubt, we tiptoe through on a balancing act of getting things done and not hurting anyone's feelings. And then occasionally just ride roughshod .....

grace I panicked when I saw that about proving two years' worth of funding, because I had forgotten (!) that my DM has a collection of very reasonable pensions as well as the value of the house. I am so sorry your DF is in this situation, I wish you and him well on his path - and I hope it is his path, with no pain and some dignity along the way. I cannot understand the 'life above all' point of view.

Re 'how much caring you can do' response from SS, hospital, nursing homes etc - definitely, everyone, fight as hard against this as you can. I have 10 pages of documented evidence of when carers didnt turn up but it was all fine because family were there to pick up the pieces. I am the daughter around the corner, and it is absolutely NOT fine. You have to be as hard as nails to get what your DP is entitled to, and even then it doesnt necessarily happen - which is when you call the ambulance basically.

cockroach to you all.

@yolofish, my DSis is the 'carer round the corner' and works from home with three kids. Every time she comes down to help out she has to then work longer in the evening. She tends to be expected to provide cover during the week.

I am a single parent so (apparently) have nothing better to do at the weekend and then my other DSis is just a bit crap (although to be fair her DH is an only child of needy -although physically and mentally fit parents). Is super hard. I feel for you.

Eventually you just develop a thick enough skin to say 'no I cant/wont do that, so what are SS (any other body involved) going to do, and what will you do when the care is not delivered?'

I'm tough enough to do that, and have done it, and called the ambulance as a result, numerous times. When DB is here though, he steps in - which is a mistake in my view. It wont happen again, because DM too far gone and he did eventually agree that care in home doesnt work. Care in the next place she goes to wont work either - she will either fall again, or throw herself out of bed again. I cant control this, or do any better. DB is convinced if she goes to some 5* luxury place she will be 'better'. She wont, but he is acting out of some sort of weird misplaced guilt on the grounds that he promised my DF she would have nothing but the best. The fact that she wont even recognise the best, or be able to engage with it, appears to be immaterial. So I'm just letting him get on with it as far as he can.

charlie you and your sister must look after yourselves xx

Grace, hospices are wonderful places,caring for the whole family and expert in pain management. It might be worth speaking to them directly- often transferring can be tricky but hospices are expert at this. I have been involved a a volunteer with our local one anD have been so impressed- they also provide hospice at h9me in some areas. All free.
Sorry to hear of else’s challenges. 🌺🌺🍷🍷

My dad was too ill to care for mum once and I called the GP and asked for assistance explaining that I only had one more day of leave left and they needed support. The member of staff who dealt with me from adult services should work in a high security prison on the punishment wing... she was incredibly rude and unhelpful. What’s wrong with you that you can’t do it was her offering.

@yolofish is SS social services? If that's the case we wouldn't want them involved because looking after my husband's brother is such a delight. I love him to pieces. I just feel bad that he's missing his mother actually being present in his life. If I could I would adopt him and move far away

fatbrows yes social services. But they will help you, they wont want to take your husband's brother away because they will see that you are looking after him. What they will do is assess your MIL and provide some help. Also, are you claiming everything you can financially?

So another happy morning in my parents household. My mum kicked my dad on his bad foot. Is refusing to let anyone near her with loo paper or do it herself and then it escalated from there and I was woken up to her screaming at dad. Have told dad I will be calling SS tomorrow to ask for someone to assess her needs. So progress in some respects. Should be taking DS to rugby in an hour, not sure I can leave them.

@CharlieandLolaCat sorry for the late reply, had a truly awful Saturday with DM's behaviour.
Even if your parents are self funding it's still worth getting the assessment done and asking for a written report. I've found it a very useful document when discussing care.

We have found that every time FIL tells social services that he doesn't need respite care because family gave agreed they will come in and look after severely disabled MIL they take his word for it. Then I have to phone them and say, no we can't. We dont live near them, we all work full time, 1 brother is often overseas and my OH is self employed. Then he has a massive tantrum. He currently isn't talking to us for that reason, will be 2 weeks tomorrow. He is still talking to another family member so we do know how he is.