Any tips for how to get parents to take the first baby steps into getting support?

[girlfromthesouthcountry]

I think we have arrived at this point, but I'm getting nowhere. My DP are late 70s/early 80s and live fully independently. DM has been declining for about five years, and is now in quite a bad way. Without going into massive detail, her cognition and memory are very poor (she's diagnosed with MCI, but I'm quite sure she has dementia, and if anything progressing from early to mid stage). She's depressed and anxious, and has cut off almost all social contact except immediate family. She has a whole host of health issues that mean she feels unwell all the time, and this is the whole focus of her life.

DF is still in theory fully capable (does all the financial admin, IT literate, physically very active etc) , but there are signs that this is starting to slip. He's increasingly uncertain about mum's medical appointments and medication, and just generally seems a bit less 'on it' than before. I think there might be an element of carer fatigue, along with him just getting older.

DSis and I (neither of whom are in a position to provide regular, hands-on help due to distance and work) are increasingly concerned. DM is getting worse and worse, and is definitely a fall risk. They lurch from one medical appointment to another, none of which ever seem to resolve anything. The house is grubby. I'm not convinced that DM is taking her meds properly. Although DF can still go out and about for a few hours atm, I can see a point arriving quite soon where that's no longer possible.

I've tried to suggest that they start getting in some support, but I'm getting nowhere. They both just focus on the next appointment, hoping that this is the moment that someone will press the magic button and make mum better (at least physically), but it's increasingly clear that that's not going to happen. I've suggested Attendance Allowance, house safety adaptations, a cleaner, a fall alarm, getting mum out to a social club etc. All met with a stone wall. They're not in any way hostile or difficult - they're lovely, and very grateful to us for caring about them - but they're in denial about the reality of the situation, and I think they see any kind of help as an acknowledgement that this is now old age, and it's grim. DF loves a bit of black humour, and he's quite happy to joke about death - but he's much less good at talking about frailty and care. I suspect they would see any attempt to get a care needs assessment, for example, as an interfering lot of nonsense.

I know the advice on here is often just to let the crisis happen, but I'm trying to see if there's any way of avoiding that, and improving this situation. We have PoA, so we're set up to deal with a crisis - but I want to avoid the crisis happening in the first place if I can.

Does anyone have any tips on how to get parents to take that initial first step of accepting they need external help?

Ive done it with baby steps, started by getting a gardener and a cleaner, the Assistance allowance covered the cost of that so that was the selling point for AA. Df died last year, mum now has carers every morning but is resistant to getting them evenings too as she doesn’t want to spend the money. But keep dripping it, every time an incident happens gently slip in, ooh my neighbour has someone come in to help with that shall we look into it for you. With mum the call alarm was dismissed as a waste of money, until she spend a night on the floor sat in a pool of blood, it was similar with my uncle. It’s just reacting to various circumstances and they’ll hopefully accept little by little.

I don't think 'baby steps' is an appropriate phrase in relation to parents. And I am afraid you do have to wait for a crisis/or for them to be ready to accept help. Watching them get frailer and less able to manage is hard. I think the best thing is to keep comparing notes with your sister. Boring stuff like Power of Attorney is also v important.

It’s hugely frustrating and I am watching the same thing with my DPs albeit they are older. They reluctantly accepted a cleaner only when DM had a fall and is effectively bed bound, but refuse to let her do enough hours to cover everything so I have to go up every fortnight to change their sheets. I don’t mind that but this time there were some poo marks on the duvet . DM gets carers 4 x per day because we are in Scotland though so physically she is looked after.
DF is also losing his memory. I am basically waiting until he starts setting fire to things when cooking or creates some other house drama as they will not accept any more paid for care ( they have loads of money) but happy for me and DH to schlep up there all the time. It’s an hour each way and I am particularly salty as job hunting and feel I can’t apply for full time positions because of them, but the part time ones are badly paid.
Please try and persuade them to get power of attorney in place.I have at least got their bank card to pay for petrol, groceries and the cleaner so we aren’t out of pocket.

Your parents sound just like my parents [ though mine are older ], including lurching from medical appointment to medical appointment thinking that each time something is going to magically happen and their frailty will disappear!
Also their house is really grubby. When I bring this up they just say it's fine and they can't see the problem. I think they just don't see it. There is no way they will allow me to clean either.

We have had many conversations about getting help going forward, especially when one has ended up in hospital. They will be in agreement at the time, but once they are back home it's as if the conversation never took place and they will say they are managing fine and don't need help!!
No POA in place as they both refuse to have them.

I now realise that we are going to have to wait for the final crisis to happen before they will accept help, because absolutely nothing else works, and it's really hard watching them decline. I just wait for the next phone call.

Thanks all. No offence or patronisation meant by 'baby steps' - I just meant it in the sense of taking the first steps in a particular direction.

Well, since I wrote the post this morning, I've heard that DF had a fall (not mum!) and has hurt his back. Doesn't seem too serious on the surface (no major damage, just pain) - but could have been far worse, and, worryingly, he doesn't really understand how he fell - thinks he might have fainted. A reminder if I needed one of how potentially close the crisis is at any point.

Thanks all for the advice, and sympathies for the similar situations. To clarify, we do already have PoA for health and finance, so that's sorted. For the rest, I guess I do just need to keep plugging away. I'm going to push hard for a cleaner, in the first instance.

How far away are you? Could you get started by putting online shopping delivery in place for them? POA is helpful but on a very practical day to day level, it helps to get yourself added onto their main bank account and have a debit card for it, as then you can just make payments more things as needed. Getting their prescriptions delivered to home should be a free service their local pharmacy will offer. You can then point out how useful and time saving these things are. Do they live in a very rural area or one with plenty of nearby shops and facilities?

This is horrid to say but actually the fall may work in your favour as a bargaining tool, I’d start by pushing for a cleaner and a fall alarm. Next is it worth asking the OT team to do a review of the house to see what aids they can put in to help them, this was free and actually really helpful, they did grab rails, chair cushions and little blocks to raise them, mum got a toilet frame thingy.

hope df is ok.

I'm a couple of hours away, and DSis is several hours, and we both work full time. Those are good suggestions, but at the moment the shopping and so on isn't a problem (they live close to good shops, and DF is mobile and driving, and could do online ordering himself if needed). It's more the domestic stuff in the house at this point, and help for mum. Annoyingly, they had an OT assessment (I think) as part of one of mum's many appointments, which I think suggested things like grab rails, but they deemed it a waste of time because it was nothing to do with mum 'getting better'. I try to find ways of gently saying that she's not going to get better, and then I just feel cruel. So frustrating. Perhaps you're right, though, and dad's fall could be a bargaining chip. I'm not sure mum would even know how to phone one of us any more, if he'd actually died/been incapacitated.

A cleaner (not an agency one, someone who works for themselves so there is someone consistent and who you can speak to) is the ideal first step as it gets them used to someone coming in and doing 'the difficult things' like bed changing and washing/ pegging out the bed clothes then it's easy to slip more things in like a fridge deep clean as a gateway to a weekly chuck out of rotten food.
My parents were the same, started with a cleaner who mum could 'help' and it let dad pop out knowing there was someone around, then a carer was introduced who the cleaner knew, then a lady who took mum out for a couple of hours twice a week, gardener, handyman and so on. In times of crisis when they needed more hands on help I did use agency carers who were great practically, but not like their daily lady who dad eventually referred to as his second wife as she gently bullied him into taking care of himself and would call me to tell me that he needed pants or that mum needed more pyjamas as she'd been binning them. And with that help they stayed at home together till dad died as he wanted - but getting them started was the hardest thing.

With DGM we started with a cleaner to do hoovering, changing the bed, and hanging out the washing.

That morphed to the cleaner coming and DGM having a bath while she was there, after DGM got stuck in the bath one day while home alone. It didn't happen again, but it was reassurance for her that she wasn't going to be lying in a cold bath for hours waiting for someone to arrive to help.

Then having frozen meals delivered from somewhere like Wiltshire farm foods, which morphed to a hot meal being delivered at lunch time.

Then progressed to carers coming to do breakfast and dinner.

Progressed to carers helping get out of bed and to go to bed.

Oh my goodness, your post resonates with me so much. My parents are in a very similar situation. They had been managing ok up until the last six months but since Christmas, DM’s health has deteriorated. She is have tests for bowel cancer & is waiting for a cardiologist appointment for an enlarged heart. She is now so breathless & lethargic that she is unable to do anything & DF has been left to do all the cooking & chores. He also has lots of heath issues so the bare minimum is being done. I live 3-4 hours away so not close by to help so have suggested they get a gardener & cleaner but this is always rejected as they both believe DM will get better and I haven’t the heart to say that this might not happen… I’ll keep chipping away whenever I get the opportunity. It’s very frustrating & I have sworn to my kids that I will never be like this!

@Mini712 I'm so sorry to hear that. Incidentally, two of DM's biggest physical issues are gastric problems (nausea, diarrhoea and bloating), and breathlessness. Lots and lots of tests have so far yielded nothing.

It’s not easy at all. You just have to keep
plugging away and each time there’s an issue, use it as an excuse to bring in a change / support / adaptation.

DM is extremely resistant to getting help in as she thinks everything is fine. But after a few falls where she ended up lying on the floor she agreed to an alarm.

The local falls team were great and persuaded her to get some other adaptations. Somehow coming from a nurse she was more agreeable to it.

The cleaner has been a challenge…the house gets grubby but she doesn’t seem to notice. She has finally agreed to a cleaner but it’s taken years to get to this point.

Doorbell camera we just installed for ‘security’ (she forgets it has a camera on it anyway).

It’s a challenge.

As a Social Worker I used to encounter this reluctance/denial of the need for assistance on a regular basis by older people. I could see the need and how their lives would improve but often the client couldn’t and would just dig their heels in.

I used to explain to my clients that having help was not about relinquishing control but instead allowing them more control, and having the assistance enabled them to remain independent for longer as it meant that they struggled less so they were able use the energy they have to do the things that they found easier and that they enjoyed.

Not sure if this perspective would influence your parents to be more accepting of assistance?

Edited to correct spelling

This is so true and I wish my DPs could accept it.

They rejected my suggestion of additional paid help a few months ago as I cannot do any more without impacting my own health and well being, but when relatives visited yesterday DF (91 frail with diabetes)was trying to climb up a mini ladder and bemoaning how much he has to do now DM is bedridden. Obviously a bit of a show on how neglected he is when I was there on Wednesday after cutting short a family holiday so I could accompany DM to a hospital appointment.

Maybe I need to take the angle you suggested. I had been saying that I am worried but can’t do anymore myself, but I now see that the part of their brains where they care about the impact to me doesn’t exist anymore. It feels like self preservation has kicked in and blocked out all other thoughts, so I can try to work with that a bit more.

I agree with cleaner and shopping delivery as a first step.

For both my parents I also had to have a proper standup row to get things moving.

The drift from one appointment to another is also very familiar as is the not taking meds consistently.

In your situation I would suggest a roundup of medication and seeing if there is even vaguely the correct quantity.

I'd also try to muscle my way into attending your DM'S appointments so you can explain to the doctors the real situation at home, hear what they are actually saying not your DF's interpretation and ask your own questions such as 'realistically what do you think is going on and the chances of improvement?'

Finally your DF also needs a memory assessment.

Good luck 💜

@CMOTDibbler cleaner has worked the same way for my DM!

Cleaner's husband does any odd jobs around the house. If he doesn't have the skills he knows someone reliable who does.

Then cleaner had a mate who is a carer...

Tough love in our case. Dsis and I sat them down and told them they needed help and it was causing us unnecessary stress worrying about them. Like others have said, a gardner, cleaner and definitely a falls alarm were all introduced slowly. The amount of times my DF fell was many (Parkinson’s) the falls team were brilliant - come out 24/7 with medical knowledge and we weren’t to move him as they have specialist equipment to get the person up. You just make them comfortable with a pillow or blanket. My DM went from freaking out at the first fall to being quite nonchalant about others - she almost enjoyed the conversation from the team in the end-first name terms and all that! She’s 84 and wears a falls pendant-her good friend didn’t and was found lying on the floor for two days after suffering a stroke. No pendant. Good luck OP, it’s not easy.

I would remind them about their own parents and ask what would have helped them

A pivotell is good if you suspect they aren't taking meds as the missed doses get locked in as evidence. I've taken photos of the inside when I've opened it to fill before now so I have clear evidence.

Argh this is familiar! A therapist told me it’s to do with them wanting to remain in the moment and alive and people with agency. Giving in to requests they get personal care is a step into a future of nonexistence and obsolescence.

Which is an interesting thought, but doesn’t change the fact they need to bloody well accept help!

My mil had all the symptoms your dm does including depression cutting off social contact and anxiety, and was diagnosed with Parkinson’s. Is it worth getting her checked by a geriatric consultant as with a diagnosis, it might be easier to talk them round into getting care.

Just going through this with my DPs.
in summary -
get yourself added on to GP records as a proxy for them both (letter from them to GP was all it took) an absolute game changer for us!
Appt for DM to follow up on MCI & get diagnosis - esp important to have mri and if possible meds to arrest decline
script for both of them for Sertraline to help manage anxiety & depression
appt by phone from you to GP for referral to Frailty clinic
request involvement of social prescriber &/or adult social services to access lots of services inc home assessment
through the above have house adjustments made

best wishes x

Just going through this with my DPs.
in summary -
get yourself added on to GP records as a proxy for them both (letter from them to GP was all it took) an absolute game changer for us!
Appt for DM to follow up on MCI & get diagnosis - esp important to have mri and if possible meds to arrest decline
script for both of them for Sertraline to help manage anxiety & depression
appt by phone from you to GP for referral to Frailty clinic
request involvement of social prescriber &/or adult social services to access lots of services inc home assessment
through the above have house adjustments made

best wishes x

Thanks all. Some really helpful advice here. Sounds like I just need to keep nagging and pushing. I'd like to go to appointments, but it's hard - I don't think they necessarily oppose that, but going to any appointment would mean taking a precious days holiday and a four hour round trip, and I'm hesitant to start down that road. Perhaps if I went to one though, it could perhaps open a direct dialogue with the GP.

@cupfinalchaos that's very interesting about the Parkinsons. DM has just developed an occasional tremor in one hand - this is a completely new symptom for her, only over the last few weeks. Did your MIL have tremors, and did they happen from the start, or later?