Expected to give up any free time for elderly GP

[CrazyGoatLady]

My elderly Nanna (95) is becoming increasingly frail, and hospital appointments more frequent. She is in her own home and has home help come in every morning. She was managing, but her recent admission (heart failure) seems to have brought a real increase in frailty. No cognitive issues, just physical decline. No family nearby, she was adamant she didn't want to move when she had the opportunity and strength to. I love my Nanna dearly, but have never met anybody to rival her for stubbornness! I don't think she'd cope with a move now. My dad fills in most support gaps, but he's in his 70s and not in great health himself. His wife is younger and still working.

I've been down there the past 4 weekends. We all went for a family occasion, then she was admitted to hospital for 2 weeks, so I went down to ensure she had visits while Dad went home for a break, and because of my job (healthcare) I'm usually the best person to liaise with medical and care staff. I went this weekend just gone because she's been settling back at home post discharge. However, Dad has now unilaterally decided this is the new normal, and said to me this morning "so when will you be coming on Friday so I can go home and see [wife] and have a break?"

This isn't going to be sustainable for me. I'm working full time, we have a smallholding, yes DC are older now (16 and nearly 19) but is it reasonable for my dad to expect that I will effectively never have any breaks myself? I've been coming home just to work and try to keep on top of the house and then collapsing in bed at 9pm. But my dad does not seem to understand this. He thinks I should want to be there every weekend and it's "just what family have to do". I want to discuss getting more paid care in, but Dad says no, she doesn't want that, and they can't support her like family can.

I get wanting the best for your elderly parent, I really do. But she didn't move when she had the chance to, and the consequence of that is, she can't have family there every day. There have to be other options.

Help me try and get this across to my dad, please, if you've been on this rodeo and have any advice!

You can set your own boundaries, and you can also tell him that you think he is doing far too much and yes he does need a break. You giving him explicit permission to override her wishes and involve professionals may help.

You are just not going to take in any guilt about ‘not helping family’ because you are - your immediate family!

Thank goodness my mum even in the depths of her cognitive impairment accepts ‘ I need to go home and make dinner for my boys’ as a legit excuse for me to leave. Or maybe she doesn’t, but she doesn’t protest. Now, I am going home to dinner but probably I will stop off for a coffee first, and dp is probably cooking. So what? It is not required of me to half kill myself sitting with my 91 year old mum all day after a full week’s work. I refuse, and I don’t care (much - ok I do get grumpy with any nursing home staff who I think are making digs). Fundamentally, your own young children are ALWAYS the priority for your time. I took care choosing my mum’s nursing home because it isnt possible for me to care for her and she is miles from living independently. That was a legitimate decision.

Well done for setting boundaries, all you have to do now is stick to them. When you rely on volunteers you have to accept they have limitations on their time, and pre-existing commitments. Oh and they also need time off. We constantly have this with FIL, if we’re not at work then in his head that means we’re available.

Thank you to everyone who has posted with your experiences and advice, it's been so helpful.

Things have gone downhill the last couple of days and we are now looking at some respite care while we think about the longer term. It's got slightly trickier because we found out that Nanna wasn't quite truthful with the discharge team at the hospital. She told them she has family staying with her and didn't need a rehab stay or a care package as we would "help out until she felt better". I have in no uncertain terms said I didn't consent to this, and am very unhappy with this situation. Not dementia - definitely none of that, she knew full well what she was doing and admits it, she just wanted the quickest route to get home, and she knew if she told them not to involve us in the assessment and that she had family support, they'd discharge her without any arguments.

She thought it would be like her last two admissions, when she recovered within a few days and was back to her usual self. But this time, she's remained quite frail and fatigued. She can't manage with just one carer visit a day for an hour. I have refused to go along with my dad's suggestion that we just try and "muddle through and see how things go". His proposal is that we split the week between us "until she feels better" - apparently because my work is mostly remote, I can totally manage the needs of an infirm 90-something as well. Erm, no.

Respite care home manager visiting tomorrow and hopefully we can get something sorted. Dad grudgingly accepts no alternative, since I won't agree to temporarily half living there, but am definitely now a fully paid up member of the Bad Daughters Club!

If DF wants OP to facilitate his respite by 'sharing the load', that's a tacit admission that it's already too much for him. Nana won't benefit from anybody attempting to provide any sort of care/ companionship etc if they're frazzled or distracted by competing priorities. DF really needs to get Nana properly assessed for her care needs, these people will be very used to potential new customers (so to speak) insisting that they're fine and see through it if they're actually struggling. OP cannot outsource her other responsibilities but DF can outsource (some of) Nana's care.

Glad you put your foot down @CrazyGoatLady
mil went into respite for 2 weeks.
she was clean, fed, well looked after and had company
my friends mil actually loved it and ended up stopping.

No is a complete sentence.

Some explanations or justifications can help soften the delivery, but no is still no.

She went in yesterday and although she was very angry at the time, 24hrs later she is eating properly again, not distressed or agitated, and her symptoms are better controlled because her medication is being managed properly by the nursing team. She will have some physio and OT input over 2-6 weeks to help her regain some strength and independence, and then hopefully she will be able to come home, but with more home care support in place.

The respite care manager and nurse in charge have been nothing short of wonderful. I am beyond grateful for everything they did to help us navigate the absolute shit show that is the NHS to get her a funded place, on the grounds that her hospital discharge was unsafe. They made the point that they should have checked with us about care arrangements because it's on her records that family don't live locally and Nanna's account conflicted with what was on the record. Even if she was being discharged into our care with our consent, the hospital should have spoken with us about her needs, medication, etc, to make sure she would get the right care once she came home. We got nothing, they turfed her out with a brown envelope and a prescription and that was it. We had to try and figure it all out from her discharge notes, as Nanna couldn't remember much of what they told her.

It's been really hard, my dad is still angry, but I know we did the right thing standing our ground. We could not care for her adequately or safely, and she is in a place now where they can, and we can regroup.

Brilliant update.

things will settle down and you and can get back normal.

You must be strong and firmly place boundaries (says she struggling with it herself) do not be drawn in. Paid help or a home. She had the choice and her and your dad’s lack of decision and planning does not constitute an emergency in your life. Full stop. Be firm!!!

I'm glad she's gone in now, that's a good solution.

I think you should be willing to up your visits a bit when she comes home - every second weekend. I do think every 4-6 weeks is unreasonable and that you could step up a bit (not every weekend, though).

You're getting a lot of characteristic MN responses on here about how the right thing to do is never help anybody, which will likely bolster you towards that direction, which I think is morally wrong and just shitty. Can people not need each other at all in the UK? This wouldn't be a question in most other countries - visiting every 2 weeks is not a huge burden.

And yes, sometimes people are a "burden" on each other. Sheesh. What lind of society do you want?

I often think there must be a special course that older people go on to learn how to use guilt to manipulate and be convincing to discharge teams. I think we've found out who runs it.

We have been through this (and I was the weekend carer with full time job and being a lone parent) we upped the care to 3 x a day in the end which works well.

My nephew has moved in for a while now to do the cooking and keep her company which has been a blessing but we also use respite care occasionally.

In my experience of dealing with an elderly MIL, towards the end she would have had all of her children give up their lives, jobs and other family responsibilities completely to look after her in her last years if she had her way.

Vulnerability seems to often lead to a degree of survival mode where other people and their lives and needs don’t matter anymore but being honest my MIL was always needy, demand ling under functioning in her family relationships.

We were unfortunate that one of the siblings acted like your father and advocated for a level of input that was completely unrealistic and overbearing even though she lived abroad and of course couldn’t provide that degree of input.

I suggest if you can that you stop thinking you are the only or the best person to provide her care, that mindset traps you in this, you are human and you only have the same 24hours as everyone else in your circle. As well as recognising and respecting your limits you also need to learn to be able to say no and mean it.

@CrazyGoatLady

you're going to get a lot of sensible responses telling you to be direct, stand your ground or address your boundaries with your DF….etc but honestly that would cause WW3 in our family. My lazy and low conflict advice is fake illness for a week or two, yours followed by maybe DH/kids doesn’t have to be serious but obviously you wouldn’t want to give your grandmother a grotty virus. This will put a sudden and effective stop to this ‘new normal’ of you working a shift pattern with your dad and him relying on you. Keep on with the ‘still not feeling great really took it out of me’ for at least a week after ‘recovery’ and then Start talking a lot about how much has then built up whilst you’ve been unwell and vaguely talking about work men/appoibtments/jobs you need to complete urgently around the house. Try to talk to dad less and certainly not every/multiple times a day.

Once you’ve been a good 3 weeks out of the situation ask your father when would be good to visit your gran (try and rope DC in) but make sure to mention you’ll only be able to stay an hour or so because of some other commitments the kids have. If he says anything direct at this point just be vague and off putting ‘we’ve got a busy life right now catching up with all that needs doing. I don’t have capacity for that. You’ve managed the last 3 weeks and if you can’t manage we need to find help elsewhere otherwise what happens when someone is unwell/unavailable…etc’

I know it’s not direct or pragmatic but honestly this is the only way I could do it in your situation without causing WW3. The prospect of losing the weekend relief whilst he’s used to and expecting it will be worse than realising it’s not coming back once he’s already a few weeks without it. Changes the narrative from you you removing your help to you just not offering it.

By the way, the care home is wrong. The NHS staff are not legally allowed to contact you if the patient has refused consent to do so and has the mental capacity to refuse consent. People are allowed to make unwise choices and this is a statutory right. The hospital staff will have done what they could to encourage your gran to have her family involved in discharge decisions, but if she wouldn't consent to that, there's literally nothing else they could have done.

This is the situation we had with FIL and social services/NHS. One time he was due a minor op but it meant he couldn't do any lifting/pushing MILs wheelchair for a couple of days. He told us SS were arranging respite care for profoundly disabled and non verbal MIL. He told SS no need for cover as family would be staying over. On the Friday before the Monday he told us SS had changed their minds the day she was due to go in - should have twigged their named social worker didn't work Fridays. So despite it being DHs extremely busy (he gets over half his income in a 4 month period), it being the very end of the holiday year for employed family members and there only being an armchair for any overnighters to sleep in we cobbled together cover. When I phoned SS to complain on the Monday I discovered the truth and that he had turned down the offer of a week in respite before he even had the date for the op. After that he withdrew permission for them or their doctor to talk to us.

This doesn’t happen but imo it should: if the team isn’t being allowed to talk to the family members that the person is saying will do the cover, that they should proceed as if they aren’t there. Ie ‘you’re saying your family live with you but we can’t tell them anything about your care? That’s not a safe discharge, we will look at respite.’ It doesn’t happen, ever, but I wish it did.

She didn't refuse consent. She was asked if she wanted one of us there at the assessment. She said it wasn't necessary and of course it isn't technically as she has capacity. But she didn't refuse consent to speak to us about the discharge arrangements. The hospital just didn't do it.

Oh god, how awful to feel so manipulated like that. That would make me feel so cross.
Although, he did it all from a place of fear and not knowing how things would pan out, that was so wrong of him; to put you all in such an awkward position!

I never expected my children to help care for for their Grandparents. It was my job no theirs. You just have to be strong and tell him in no uncertain terms that you can't do it anymore. Just step back. He can't expect and make you do this.

Why would they, though? I'd be pretty pissed off if nurses went and spoke to my family when I'd said they didn't need to. Just because she's old, doesn't mean she has fewer rights to privacy.

Yes, this! This would be very sensible but not necessarily lawful, frustratingly.

@ChocolateMagnum when you need other people involved in your care, you lose privacy. You can’t speak for other people because you are old and need care. The carers have to have the opportunity to speak as well.

@CrazyGoatLady great update, but @SENSummer has some good advice too.

I managed a similar situation with DM by changing the narrative. Instead of calls always being me listening to her, her worries and needs and complaints, I started complaining about my own life. The initial ‘How are you?’, was answered with a litany of how busy I am, how tired I am, how fed up I am with never getting a holiday…

It totally changed the dynamic. I mean, she’s still demanding, but has a better idea that I have a life outside what she needs.

If someone is good enough to be involved in your care then surely they are good enough to be kept informed of what's going on with it.