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!

Anyone can assert a right to privacy, but it's a bit rich of them then to think they have a right to care provided by their family (they don't) and in exactly the way they want. Ironically that's them disregarding other people's privacy and autonomy.

Agree 100% with this. Only someone who hasn’t been done over by elderly relatives would think it’s unreasonable.

My family aren't British, so part of what I'm up against is exactly that cultural expectation that's based on a) women doing all the heavy lifting in terms of childcare and elderly care b) women not working and c) families remaining close in location. Older family members have the same expectations of the women in the family without considering context. They wanted to move here for the better opportunities, then don't like that giving their girls those opportunities means they grow into women who can't fulfil a traditional role in the family. They can't have both. Be careful what you wish for, romanticising "other countries", especially if you have daughters.

DNanna also had the choice to move nearer to us so that it would be more possible for family to provide more help, and refused. DN has also repeatedly refused to do things to help herself, like home adaptations, a cleaner, etc, every step of the way, until a crisis made them unavoidable, and then we have had to scramble to get them in place and often pay ourselves when she could have had financial help, but there wasn't time to go through the process. This isn't about saying it's not valid or legitimate for her to have needs or need her family, and yes, it is inevitable that old age does bring burdens, for everybody. But she has made those burdens harder and heavier to carry. It wouldn't just be visiting every 2 weeks for company, a bit of home cooking and a few odd jobs at the moment. It's a whole weekend of work. Dealing with the backlog of laundry and other housework that the carers and cleaner don't get to because she doesn't pay for enough help. Helping her out of her unsuitable bed (too high for her to safely sit with her feet to the floor and not adjustable) to the toilet and back, sometimes more than every hour because she's on diuretics. Including 3-4 times in the night, so you don't sleep much. Upstairs, downstairs with cups of tea, meals, medication. Batch cooking for a week because she won't touch ready meals. All that plus 6hrs of driving after a full week of work in a senior role in healthcare where I have responsibility for the training received by clinicians who will be looking after others' vulnerable relatives.

Maybe others have the capacity and energy to do that every other week. I don't. I have always done what I can, especially when DF has been poorly. But I'm exhausted and now ill myself with DS2's back to school lurgy. The reality of our situation is that family can only be backup and support, not main carers, no matter what DN wants. She hasn't made it possible for us to be the main source of care.

And being stubborn. I used to think my dad was the most stubborn person in the world until my mum got to very advanced old age with very poor health. She was stubborn to the point of stupidity which made her life a misery and mine a complete misery. I wasn’t unsympathetic but finally I couldn’t cope and it was making me ill. There is nothing I miss about those last few years. I think she finally lived in her own world so much that she couldn’t see how much help she needed.

She had capacity until the end apparently. When I was crying that I couldn’t cope if she came home from the care home (she finally hated it there despite it being a good place with kind staff and she was unsafe living on her own, she didn’t want to live with me which wouldn’t have worked anyway) which technically she could, her social worker said I could refuse to help, which is sound advice but, in practice, wouldn’t have happened as she’d have manipulated the situation and despite her deathbed claims that I was hard (I couldn’t do as she wanted), I really wasn’t hard enough to do that. She’s the only person who could do that with me as I complained to my husband. And nobody caused me as much anxiety, certainly not my children as toddlers or teens, though I might have been lucky with them.

I miss the mum I had when she was well though she was never an easy person but I don’t miss what we became. If that makes me hard so be it.

Solidarity to all of you dealing with this, not an easy path

Absolutely this. She decided without our consent that we would provide care when she had been assessed as unfit to manage at home with one carer visit a day. If you need others involved in your care, you can't make decisions for them any more than they can override your wishes.

@iloveeverycat - that's very good that you've protected your kids from it. I've been so involved with DNan care because of my DF's poor health at times. I did so willingly and never minded. I always upped visits at times when DF was ill or having treatment, and my work means I'm well placed to help deal with professionals, care agencies, etc. I have never begrudged DN anything, up until recently when her needs have got too much for us to safely manage with the current arrangements and she has refused repeatedly to make any changes and manipulated a situation where we were forced into caring at a level that is unmanageable.

That behaviour really makes my blood boil. As long as they are OK - stuff everyone else.

Whilst my parents wouldnt have dared do this to me as I would have checked what they told me was actually true I did have a friend who was on the verge of a nervous breakdown looking after demanding elderly person.

It turned out that the parent had been offered all sorts of care, cleaning, making a hot meal etc during a hospital stay and the parent lied and said she didnt need anything as her daughter was insisting she would do it all.

As is the NHS no one checked this was true. It was only when finally friend was allowed to have a LPOA that she found this help had been offered a number of years ago. By then the parent had nearly caused the end of her marriage. She missed school concerts, parents evenings because her Mum always had some sort of emergency. Mum said that due to budget issues they werent able to offer any support.

For all the reasons elderly people do this, memory loss, scared etc they still seem to have the ability to fool everyone.

Honestly OP, there may be an additional element because of culture, but I am British born and bred and I have been horrified by the change in my DPs personalities and the expectation that I sacrifice my middle aged life, career and marriage to protect their elderly ones.

We are at a bit of an impasse DM is constantly expressing how worried she is about DF - increasing memory loss due to dementia I am sure but little chance he will agree to an assessment- whilst simultaneously having agreed to get the cleaner in for an additional couple of hours when DH was there and now denying this is the case.

I waiver between extreme anger and not being able to walk away because they are my DPs. The one thing I am very clear on is that adult DS doesn’t get dragged into this. Bad enough that DH and I are having our middle ages compromised by their ridiculous intransigence, but it isn’t happening with my DS who has his own life to live.

You just need to be firm with your DF. Continue to give him permission to involve external carers, or more likely drop the rope and force the inevitable crisis so DGM accepts that he can’t do it all within the family.

Be firm.
Encourage more hours by visiting carers.
State clearly to all that, now that Nana is back home, you will be resuming your sustainable visits of every month to six weeks.

If you could manage more communication with her medicos that might be smart.
Nana is 95 so she it's likely that she will decline quickly after any serious health issues.

OP cannot visit every other weekend. She has school age children who she has a responsibility to. She also works full time. She is entitled to some down time.

No you don't. That's absolutely unlawful, thankfully.

I don't disagree with that statement. I'm only saying that the hospital staff are not at fault here.

You just need to break the cycle and say “I’m not coming this weekend dad, I’ve got things on at home” and just go only when it suits you.

I assume you’ve had the conversation with him about her choosing not to move when she should have done? And that whilst you are happy to visit you’re not prepared to step in as a carer?

Well, we don't actually know that for sure because even the OP only has a pieced-together version of what actually went on. Many hospital staff are caring and diligent. Many others are focused on the answer that solves the problems from the hospital's side, ie enabling them to discharge the patient, and will take at face value something that should really be checked on to ensure the patient gets proper care once out of the door. It's really not that unusual that patients like this at least exaggerate, and at worst outright lie, about how much care family and friends will be providing. Then those people are effectively handed responsibility without being properly informed, or having the chance to consent to it. Hospitals and other institutions tend to get a lot less exercised about that.

No who doesn’t? What’s unlawful? I don’t understand your comment, I’m sorry.

I understand x