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, hope you have DH with you as I type.

Dad is in a shocking state. I think he'd like to refuse treatment but feels mum won't stand for it. I broke down in front of mum today and said some things I should not have. Oddly I think I feel better. DP reckons all sorts gets said in these situations but that people will never say outside the family.

yes he's home lighthouse thank goodness. The CT scan report does not make for good reading, but they dont have the MRI info yet, it will be discussed at multi disciplinary mtg on Friday. So for now he is an outpatient. I understand more about the CT report than he does, but he is aware there is a 7cm mass...

Your poor Dad, and mum, and you. so much sympathy. Forgive me, I cant remember, does he have a DNR? and have you discussed treatment with docs? Now my DM is in such a bad state I have found them to be more forthcoming.

Looked up the £2k a week care home DB and SIL want to put her in. Although this sounds awful I cannot see the point - she will not be able to engage with any of the facilities they offer. And her money will run out very quickly.

Yolo, I think he's probably better as an outpatient if he's able to control pain? My friend did all her treatment as an outpatient, it's good to go home.

I totally see your point re the care home, I've seen three now and assuming dad stays bed bound, the facilities would be no use to him, guessing your mum is the same. Also dad wouldn't want to socialise even if he could. Neither would I. In fact I've been slightly alarmed how much the care homes didn't account for that. I'd much rather he had a decent room than worry about the other stuff.

I haven't dared mention palliative care to my mum. I've just been looking it up - he has some fairly rare heart issues - and apparently doctors are often quite reluctant to suggest palliative care with this. Also he has a pacemaker and apparently switching it off is seen as virtually physician assisted suicide.

Apologies for being so depressing! I'm worried about something else now, which is that the docs might see him as a good learning case with rare conditions. He said in front of the doctors that he doesn't want any more scans, because being moved out of bed is so painful. Docs and mum both just said "oh, it will be fine." I'm actually quite appalled by that response.

Forgot to say, yes, he has a DNR.

Hmm. They actually cant use him as a 'learning case', its not ethical. I think your mum is clinging onto the possibility that he will get better enough... so I dont know how you get round this one. I am firmly of the opinion that quality of life is the thing that really matters, and so if he can say no I dont want another bloody scan then they should respect that. But fear does weird things to people, and perhaps he is frightened of how your mum will cope, and of facing potential death himself. xx

No wisdom to add light or yolo- just thinking of you.🌺🌺

thanks sandwich

Yolo, I do know that they can't really do that, it's just I wonder what the mentality is when they have a patient who has some mystery illnesses too.

also I hate the way hospitals divide responsibility. He is bed bound but they have left 2 zimmer frames by his bed. He didn't even succeed in getting out of bed and sitting on a chair.

when I asked about it, the doctor said, oh well it's about physio so not really for me to say...but physio will be important for his recovery. Of course I know that, but can't they leave physio visits till he can actually get out of bed?

I'm also completely losing patience with mum - who won't allow a supermarket delivery etc so either insists on going alone and then complaining about her leg pain and using a walking stick, or I go with her. So I'm feeling like actually all her needs can be covered in other ways instead of me travelling 90 mins min and staying over, or having the journey back.

the hospital is quicker for me to reach, so I'm thinking now I should just go there.

yesterday I found myself wondering if dad is controlling over her because she can be so silly and inefficient. In fairness, I always found her massively inefficient, even when I was a child - I think we talked upthread about how some people just enjoy chaos.

the chaos is partly why my head exploded yesterday and I said some awful things. Though I do still feel better for having said them.

I think dad is dying the kind of horrendous slow death that will take years to occur, so better for me to go to the hospital more and probably just leave mum to it. At which point, she might realise, online shopping exists and will take 10 mins for me to sort out....

Just the hospital sounds like a good plan, as everyone on here always says, you cannot possibly do everything - physically or mentally. How old are your parents? It would probably be good for your DM to step up and have to take charge of things for herself, even if she has to struggle to learn. Doesnt sound as if your dad will be out of hospital anytime soon. Saying awful things: is one reason why I was limiting the time I spent with mum, because I could destroy her so easily and I dont want to do that. Now she is completely bonkers it is strangely easier, but on the other hand it distresses her that I can't 'save' her so I am pulling away anyway.

I suppose at some stage we all reach the kind of breaking point where we realise that we have to do what we need to do to protect ourselves and our closest people.

they are both 80.

I'm not sure it is right for her to step up and learn things and I'm happy to do them. What I'm unhappy about is the chaotic nature of things. So if she left a pile of post for me and said "deal with that" I would do it.

but what she wants is for me to sit there explaining it and then if it's a bill, she will spend ages hmming and hawwing and writing a cheque and peering it and asking me to check it several times.

those hours watching her do things painfully slowly are driving me nuts. That sounds awful doesn't it? I feel bad but I just cannot see the point in doing things so inefficiently. She has regular prescriptions to collect and won't use a delivery service - in fact, she goes to the GP, collects it, then goes to the chemist - though even the chemist asked her why she wouldn't let them collect from the GP. She was a very very bored housewife so I think it's hangover from that being how she filled her days.

she got a couple of interest statements from the bank and said to me that some paperwork had arrived and she didn't understand it. When I told her she just needed to file it and there was no action to be taken, she seemed quite baffled.

so many swings and roundabouts - I thought dad was controlling but perhaps her admin ability is so poor it was just easier for him to do the lot? I don't know. All my life, she's complained about him wanting to switch bank accounts to get more interest, or wanting to pay bills on time. I don't see anything wrong with that. I think it annoyed her because she had to sign things occasionally.

Perhaps resentment is just sky high all round because of the situation.

she's got cupboards and freezer full of food, but refuses to do things like freeze bread. Also, she has particular days for particular errands and even now, doesn't want to change them.

Lighthouse I am experiencing the same - I would be happy to do what is needed where I can but I too prefer to do it my way and to my timescale not necessarily to make the trip to do it at their side. I do not think it is unreasonable to say I away able to help but not always exactly in the way they would like. I suspect it arises from an unease surrounding the reality that they are no longer able to manage. I think that is why they want to appear to do it themselves but with you alongside if you see what I mean. Or maybe it is just the need for company. I have found that as dementia has progressed this has got easier for me as there is no choice but to hand it to me. If I can, I immediately squirrel it away to deal with alone!

Likewise suggestions to streamline a process are met with resistance - likes to go and deliver and collect repeat prescriptions and can not commit to being in for a supermarket delivery. I just keep suggesting and try on each visit to get another bill set up to be paid by direct debit rather than cheque or register with a service online such at prescriptions. Just chipping away really but I see it all as a slow preparation for the next stage.

Yolo hope DB and SIL arrived today to take the lead there and that multi-disciplinary meeting in helpful tomorrow.

lighthouse and super I really feel your pain about the admin, that must be excruciating.

Today's meeting was ... interesting. Physio kicked it off by talking about DM returning to her own home and DB and I were like 'really? she's on 1-1 nursing care, how would that work?' apparently many families like the idea. Kicked that one into the bushes.

She is just about medically fit to be moved to Devon by private ambulance; what this would do to her mental state is unknown. Discharge manager said she had no capacity to make a decision this morning; DB and SIL said she was quite lucid by about lunchtime.

They now investigating cheaper care home near them so that we can keep control of her affairs for as long as possible. POA should be through in about 3 weeks time, so we can then get on with putting house on the market blah blah. Meanwhile we are all adamant she will have to bedblock as dont want her to go through two moves.

No DH news but his multidisciplinary team meeting is tomorrow (we not invited) so I expect that next week or so will involve colonoscopy etc. He's ok, shocked and tired, but no pain or bleeding which is good. I have told him that he is an attention seeking bastard, so he is heating up tonight's Tesco Finest Lasagne!!

Does anyone know the legal situation if we start to clear her house out before we have POA? There's a lot to be done to make it marketable...

Yolo do you have the energy to start sorting the house - you sound superhuman!
Ultimately you are only at risk if someone were to challenge you legally in some way. In reality if you are not clearing anything of value there is no risk (and it sounds like in your situation there is no-one else likely to protest). I would go ahead and try to get it marketable - it is terrible to say but from all you have posted I can not imagine your DM is going to return.
Enjoy that Finest Lasagne heated up by some else - luxury.

super we are starting with the garage... also need to work out stuff like how to sell the stairlift, which is essential before anyone comes to view as getting past it involves vertigo inducing negotiations over the banisters. She wont ever live there again, so we need to get cracking now. Do I have the energy? probably, at least it will feel constructive.
I also worry about little things like small bits of silver which would be easily pocketable if someone was less than scrupulous. Agent would be doing all the viewings. And there is too much personal stuff/clutter to make it easy to sell. So it does need a clear out.

I understand the need to make small progress - for me it is always a good feeling I would probably make sure I kept a full account of anything I sold and the proceeds in case I had to satisfy anyone in future that I had acted correctly. Presumably clearing items of no value will be no problem (except to her were she ever to realise). And as you say easier to sell with less personal items on display.

Sigh. She has decided she would like to move to Devon, but doesn't want to sell her house. She has this idea that in Devon there will be 5 adults to dance to her tune - except that after the first 'let's visit grandma' excitement, 2 of the adult daughters have small kids who have school, parties blah blah and the other one runs a very demanding business.

She started off all being up for Devon, then had a nap and woke up confused and scared again, cant sell house blah blah because she is clinging onto a dream.

Agreed with DB that they continue to investigate somewhere near them; that I will not 'blame' them if the move makes her worse. I think we have decided that she has to self-fund - it seems to allow us more control over where she goes and how to manage house sale etc. Otherwise SS will 'manage' what she has and allow her £24.90 a week spending money!!

DH sort of ok; shock still pervades. Got a phonecall from GP surgery today - "what time would you like an appointment on Monday?" This is a bit of a shock as usually an appointment is rarer than hen's teeth and you have to go on bended knee to see the nurse practitioner...

No flashes of wisdom but lots of support and good wishespickle and light🌺🌺🍷🍷🍫🍫

I actually think DB and SIl are finally realising the commitment they seem to be making, and are possibly changing their minds... which is kind of interesting given that I have been the day to day carer for the last 10 years, the one dealing with the hospital admissions, the doctor appointments, the shopping, the changing of admin etc etc.

Yolo, that must be so galling. Perhaps they are seeing what it could be like- they have had a peek into your world and not liked what they have seen. 🍷🍷🍫🍫

So, we are getting a new rescue dog tomorrow - hoorah! I'm in TKMaxx and then Pets at Home shopping for all the things we need, and I get a phonecall from DM: "I am arranging to sell my house and I need you here now to speak to my financial adviser and estate agent, we're just having a coffee. Do come to my room, it's number 8." Arrive, mental health nurse doing his 1-2-1 thing, she is trying to get out of bed. Spend 20 minutes having the most surreal, rambling conversation ever, plus all the usual who are these people, why are they in my bedroom, do we all sleep here, no one feeds me, help me, save me. This is not my DM any more, but tbh POA cant come through soon enough.

DH and I really happy about new dog, we've agreed it will be so good to have a different focus and to be able to go for walks etc once she's settled in. Funny, because he was never a doggy man before we got our old boy, but he has come to appreciate what a dog adds to life.

Fantastic to hear about the dog- sounds a great plan. So sorry to hear about dm. 🍷🍷cockroach

I've been lurking for a while and finally plucked up the courage to post and vent.
MILhad a stroke 3 and a half years ago. She wasn't expected to survive but did and is very disabled - paralysed on one side, can't talk or read so can't use a word board, incontinent. She was in a nursing home for 2 years then FIL announced he was taking her home. He has had multiple health issues - diabetes, atrial fibrillation and Parkinson's. To be fair, with maximum help available from SS he does a VERY good job of caring for her and she has made much better progress than anyone expected.
We have 2 problems. At first he refused respite care, only accepting it after 2 emergency hospital admissions. We all live at least an hour away and one son's job means he spends a lot of time abroad, my OH is self employed, the 3rd has major financial problems. The last respite break didn't go well and MIL got dehydrated and is understandably distressed at the prospect of anothervrespite break in a home again and TIL has told SS he doesn't need respite care as family will cover. No discussion and we cant. He forgets I have frail elderly parents work full time too.
Now FIL has been diagnosed with prostate cancer which may or may not be advanced/ aggressive/spread. He is either confused or sticking his head in the sand but won't have anyone go to man appointment with him. Doctor may or may not have recommended radiotherapy depending on his mood. He is convinced the means a single day at hospital.
Just need to vent where people will understand.

Hellollo countrygirl you are very welcome to join us- vent away, we can’t solveproblems but do really understand. It sounds really tough for you and ils. Is there anyone he would listen to? Talking to Macmillan might be useful..... or let his gp know your situation?

At the moment he won't talk to anyone. I have an understanding boss who will let me have time off at short notice to go to appointments but no. Apparently he refused to even have a McMillan nurse there when he was given his diagnosis. I get he is scared but he is making his own life more scary and difficult - he cancelled the first appointment to get the diagnosis and then complained he couldn't sleep while waiting. My husband visited this afternoon and he is currently insisting he will buy 24 hour care at home with his £8k savings. He doesnt think an agency will charge much as he doesnt have much money! When MIL first came home he told us we didn't need to worry SS had it covered and told SS family would provide emergency care. When he had an emergency hospital admission on a Friday there was chaos and poor OH ended up having to work the next 2 Sundays to catch up with his customers. His business is seasonal and he ialways works days a week at this time of year.

oh countrygirl that sounds so bloody tough. I think a call to his gp would be a good idea - they wont necessarily talk detail to you but if you explain the situation and that you would like them to follow up they should do it. No you and family cannot be the default carers, and you will prob have to be tough about this when SS etc involved. I am 'the daughter round the corner' and have had to say that I am not available to provide 24/7 care - and nor is that suitable for the carer or the caree. Emphasise the fact that you and DH are not available and also - importantly - that you are not trained to provide any care.