Impending gloom

[Anislandnevercries]

It’s not even 8am and I am exasperated with my parents already.

They are early 80s, living 90 mins away from me and superficially managing ok but there are so many potentially crappy things that I am waiting to happen, stemming from their inability to look after themselves properly any more and their stubborn refusal to do anything about it.

Diabetes that isn’t managed properly because they won’t follow a sensible diet or lifestyle. Recent (eventual) treatment for cancer where wounds are getting infected and they won’t go and see a GP. Inability to communicate effectively with anyone because they won’t wear hearing aids, won’t sort out decent phone reception or coverage in the house. Living rurally with crappy internet/mobile reception and refusing point blank to ever move out of their house. Refusal to accept increasing memory issues and confusion. Fridges regularly full of rotting food. Bladder/bowel issues, ongoing incontinence not managed effectively …

I try and try and try to improve all of these aspects, I visit twice a week and speak regularly in between. Offer them so many solutions, kindly and gently. Practical help as often as I can. My medical DH is so helpful and supportive too. But they are both so stubborn and thoughtless. And there’s just me, no siblings any more.

Last night’s drama over the phone left me tossing and turning all night worrying, this morning’s phone calls have added more exasperation and anxiety that they won’t ring the GP and get the urgent appointment they need. I’ve been made to feel yet again that I’m making an almighty fuss over nothing, when there’s clearly a medical problem that needs dealing with urgently.

All I can see in the future is decline and drama and worry, and I feel awful for thinking that and writing it down. I feel like I am reduced to just waiting for one of them to have a(nother) fall or a stroke or heart attack. We are very lucky in that there will enough money to care for them properly when needed, it’s just going to be so hard getting to that point. And my relationship with both was never entirely positive for various reasons and can still be very unhealthy for me if I don’t protect myself, so there’s not a bottomless store of warm happy memories to sustain me.

This is basically just a whinge so I’m sorry for boring anyone. I know lots and lots of families are in much worse situations. But becoming an only child so long ago really did leave me with a whole lifetime of crap to deal with and I had no idea.

Not sure what I wanted to get from posting this. I guess it feels a bit better writing it down. Thanks for reading, if you did! And sorry if it upsets.

Rationally you know they weren’t great parents; you being the perfect daughter isn’t going to change that.

Are you able (emotionally) to step back and let them make their own unwise decisions?

I know you are trying to make their lives better and stave off disaster, but realistically this is a losing battle. If they wanted what you see as a better life they could do it for themselves. They are choosing to ignore your advice. And there will be a crisis however hard you try to stave one off. What will be will be.

Can you do less - visit once a week, call once inbetween?

Don't apologise.
If you do want any advice, mine would be to stop trying so much. You can't change them. There's no magic words that will make them. Decline and crisis may well happen but you'll be better placed to deal with it if you haven't burnt out banging your head against brick walls.

I'm sorry you're going through this. I'm also an only child. Went through a horrific time with my dad's decline and death a few years ago and still have mum who is nearly 87. Physically she's not as 'bad' as your parents but the poorly managed diabetes, incontinence and hearing aid issues plus refusal to move etc all ring a lot of bells.

Tbh I often feel like I'm waiting for her to shuffle off before I can live my life, which at 50 is quite a scary thought. When I read of olds living I well into their 90s my blood runs cold.

Anyway...have you asked for an assessment from local social services? That would be the best first step...might they listen more to a professional? I'd make sure you have POA sorted if you haven't already and you can also log with their GP surgery that you're their carer.

You can't force them to take better care of themselves unfortunately (my mum started smoking again 3 years ago and basically lives on ready meals, ice cream, rice cakes and sweets despite the diabetes and a heart attack a few years ago). All you can do is make sure you reinforce your own boundaries which is easier said than done I know.

Do you have any support in RL?

Sounds lousy for you OP. I had the same issues with my mother five years ago. They both need assessed urgently by a GP for the memory problems. A diagnosis of dementia should lead to the involvement of a social worker who can assess their living conditions. Sounds as if they can afford to pay for a bit of private help because the state package is pretty poor. But they sound stubborn as hell and it won't be easy. Assisted/supported living sounds the best bet here as there is on-site help to deal with day to day matters (laundry, meals and those putrid fridge situations) and they also take over medications and contact the GP when needed, which is a huge burden lifted from family. But if they won't consider it, they need a paid carer.

I agree with trying to get an assessment from social services.
Also do they have attendance allowance- sounds like they could be eligible.
Start with a small step - even if you can get a cleaner in they could check the food dates in the fridge.
If they won’t accept anything then really the only thing you can do is step back.
I was you until DF went into hospital with a low heart rate and we sent the doctors a letter to say DM had agreed to go into a home and we weren’t prepared to support him anymore. Consultant said he could only be released to the care home.

if they are self funded then the process can be quick when/if they agree to it.

Op sorry to read this. Not easy when no siblings. I already got a call am I calling as easter. I said saturday yes sunday no. Honestly she would map out my whole week. You can only do so much. We have home help but sure she moans about that too lol

sorry op but it’s time they move to the old folks home.

Offer to sort various things like a cleaner or social service involvement and each time they decline drop the rope a little more so less visits or calls.

Basically this protects you from inevitable burnout and hastens the collapse of a system you are artificially propping up.

I say this having supported both my Mum and a very elderly friend through this tricky transition and caused myself serious physical health issues in the process by not recognising the inevitable earlier.

It is a complete misery and you have my biggest sympathies. I’m on year nine of caring for my mother. She’s just gone in a residential home. You’d think that would make things easier. The problems just change. We’ve gone from years of crisis calls in the night, police breaking down doors to get in, hallucinating on the street, unreasonable demands and expectations, and countless DIY requests per year, to relentless care home calls, paperwork, POA duties, banking, estate agents, utilities, social ombudsman investigations... I could go on. It just DOES NOT STOP. Ever. Advanced Parkinson’s, Alzheimer’s and vascular dementia. My dad died very suddenly nine years ago, and my mother just treated me like a replacement spouse overnight. All family distanced themselves and left me to it. My only sibling lives abroad so no help. Mother in law was also recently widowed when I first met her and needed a lot of support. She made my life hell for the first decade, now also has Alzheimer’s, and in order not to fund her and to mask her true needs, the NHS CHC assessor got them to drug her so strongly with antipsychotics to stop her violence, that she’s just a drooling, empty shell of a woman who wants to die. My husband is an only child. All their life admin and paperwork comes to our house. I’d say we have 5-6 admin tasks per week to sort stuff out for them. Some days the only post we receive is theirs, with endless things we need to action on their behalf. Neither mother could be bothered to sort their wills to put half the house in trust for us to inherit anything, so we’ll stay working class poor people forever since the care home fees are wiping out any remaining assets like an open tap. It’s a misery. Today’s email was a result of my mother’s usual manipulation. An email stating someone had spoken to her about DNR but she wanted to speak with me first. She doesn’t. She’s ignored every single piece of advice I’ve given her in the last decade. It’s just to play on my guilt so that I visit this week. When I visit I will be met with the horrific symptoms of all her diseases, she’ll cry and weep and cry and weep. I’ll come home and feel like putting my head in the oven. Meanwhile, MIL’s care home called up twice this week to pressurise my husband into agreeing to antibiotic treatment for her for a chest infection. She’s 84, a shell, and has been asking to be allowed to die for years. But no. They’ll just crunch up the tablets, prevent natural death, and extend her suffering. Just why???? No doubt they’ll stop treating her when her money runs out.

Solidarity. It’s an absolute nightmare and I’m not sure how much I have left to give in terms of living with constant dread and trauma. I’ve had several breakdowns because of the toll. But I have two primary school aged children and a full time job to manage so I truck on. None of our parents had to do any care for their own parents. They all died quickly and were all living fully independently just before death. I heard of a friend recently whose father was diagnosed with two brain tumours and there were whispers in low voices about how awful it was that he wouldn’t live beyond 12 months. I was jealous. I must be a dreadful human being. My father went unexpectedly and quickly and it was a blessing for him. I still have nice memories of him.

That sounds brutal @user555999000.Unfortunately a lot of us are in the same boat. You should have a look at the 'Guardian Article' thread that's been running here if you haven't already done so. Absolute lunacy when it comes to prolonging the awful lives some old people lead. I hope things settle down a bit for you when you get your mum's house sold, I remember that being a particularly nightmarish period for us. I think the DNR just relates to CPR which is only in the case of their heart stopping and as you say, it's the other stuff, the relentless drug and vaccine treadmill that is so hard to stop.

I feel your pain.
Do you have a POA in place?
This is vital!
There is little you can do at the moment, I would get attendance allowance for them and use get some good cleaning/care in place.

I did this for my late Mother, I used the threat of Social Services and it worked.
Unfortunately she didn’t have a POA, this caused me a year of grief when she lost capacity.
I too am an only child, she was a difficult woman.

Thank you so much for the kindness and helpful suggestions. I was expecting at best to get some eyerolls and to be told to just suck it up!

We do have POA sorted and they have a daily cleaner now who they like and who is a saint as far as I’m concerned. They hate the gardener that I sorted for them though - that’s one of the regular complaints!

My Dad was forced to go to the GP yesterday as he felt so awful and his wound was so obviously infected 🙄so now he is under their surveillance for a while which is a relief. Getting them to interact with 111 out of hours was a disaster as they didn’t hear the phone ringing so the clinician had to ring me back and couldn’t ask all the important questions through a third party … I’m just relieved this latest unnecessary drama has been sorted before the long weekend. Now have to sort myself out with an emergency trip to the dentist 😫 … I am very mindful of the suggestion that there is no point making myself ill trying to be the perfect daughter.

I am so grateful for everyone’s sympathy and kindness and wish that this boat that we have all found ourselves in didn’t exist somehow. Or at least it had a stronger engine 🤪 @user555999000 I am so, so sorry to hear about your particular experiences, you are so kind to have posted and offered sympathy when you have had so much to deal with yourself. I know how fortunate I am compared to many many people today, I feel dreadful for even thinking about feeling sorry for myself. That’s why I posted here I guess - anonymously!

I wish you all a happy, peaceful, guilt free Easter weekend at least xxxx

@Anislandnevercries I used each and every interaction with medical or social work professionals to stress how unsafe the situation was and how I was unable to provide overnight or ongoing regular support. Don’t know if it helped but certainly doesn’t hurt.

(And OhMyGod @PissedOffAndStuck my mother also started smoking again about three years ago, despite two brushes with cancer. She also eats crap then moans about stomach issues. I’ve lost the ability to care about that particular issue now, but my kids are aware that Granny smokes and are very upset about it. Sympathies x)

Solidarity - can’t imagine how you’re coping. For me, was in very similar situation. Advice re putting in support ignored for years also offers to pay for support. 80 yr old DM barely managing DF’s incontinence and compromising her own frail health . Things only got better after health crises. Hospital admissions although involving dreadful 3 day waits in ED led to proper support. A lovely consultant talked through their day and said it was ridiculous and that DF would not be discharged without care. Social services have been fantastic. I’ve reduced my hours and stepped off promotion track to be there every 3 weeks - live very far away. They often ask why are you working less now and seem oblivious to sacrifices my brothers and I are making. They never ask about DGCs which hurts me. It’s grim. Hope things improve OP.

Do you have powers of attorney in place to deal with financial affairs at least should they be suddenly incapacitated at least? If not that is something that could really help as dealing with the court of protection if you haven’t is a bit of a nightmare and expensive.

im guessing they will not consider living near you, a shame because a suitable apartment with good transportation ideally walking distance from services would be so much better. I’m hoping my parents make the move soon BEFORE health deteriorates, they can still downsize by themselves currently

@SkyBlueAndTired sympathies on the job. My contract ended during the eye of the storm with DPs and as a result I am now working a pt admin role, rather than a well paid professional ft one. I am lucky to even have that as I more or less had a bit of a breakdown the latter half of last year because of the demands on me due to their refusal to allow me to put robust support in place. Thankfully we are reasonably financially secure due to a big VR payment I got a couple of years ago, but it really rankles that they had all this money from being able to work how and when they wanted and I am so stymied because of their selfishness. Of course they seem unable to understand it due to old age and both having forms of dementia.

I guess I could try to get back on the saddle now they are in the care home, but the whole process has been so stressful and ghastly I am not sure I have the energy. Ironically now they are in the care home, most of their money will be used up on care. Absolutely proper that it should be, but if they had gone in when they needed to a year ago, I could still be earning well and not have gone through so much trauma.

Its so hard because I feel so angry with them, but I know their executive functioning isn’t working properly. I don’t know what I could have done differently, I couldn’t just abandon them.

As others have said you need to take several gradual steps back. They seem to want you to be at their beck and call and fix everything for them even though they won't try to help themselves. It's all quite manipulative.

When the complaining starts or you give advice and they won't listen, shut down the conversation. Make an excuse that you have to go. Don't engage in draining conversations that lead nowhere. I think they need to learn you aren't going to pander to them all the time.

I do agree with this. We often have to say something like “there’s someone at the door, I’ll speak to you again soon”.

I also totally agree that you need to look after yourself, grief, poorly teeth and Parents in this kind of state is a lot to deal with

I don’t know about the previous suggestion of moving to sheltered accommodation though. Around here there is no way that they would be accepted as new residents, they’re simply too far gone. I think if they do have a move now, it’s likely to be a care home.

One thing I would suggest, and I’m sorry if it’s been suggested before is an assessment by an OT for both of them.

Read your post this morning and it was like reading about my own life. Yesterday was a 70 mile round trip to help my Mum change clothes and have a wash as carers are not covering the Easter BH weekend and my Dad refuses to help. Both unwell with ongoing chronic health issues and dementia, but still live on their own in a rural area. Finally after years of trying to convince them they now have cleaners, a gardner and a dog walker. This is far too little too late. Mum needs much higher levels of care which my Dad won't accept. I have teenage children and a husband with their own ongoing health issues and a part time job which I have stepped down the hours of to deal with these ongoing appointments for 5 other family members who all need transport to the appointments and support. My Dad calls sometimes daily to moan about how useless his GP is, how useless the NHS is all while eating crisps down the phone and drinking a bottle of wine a night. He is extremely deaf and cannot hear the phone ringing next to him on full volume, but refuses to wear his hearing aids. I am sick of how it entirely consumes my life.