Struggling to cope with parent not in care

My Dad collapsed Christmas Day 2021, at the hospital he was diagnosed with vascular dementia and placed into a care home. When he was admitted the consultant at the hospital told me we’d be lucky if he lasted six months but here were are 18 months later with no sign of anything imminent. Its a weird sort of limbo in that he is in a constant deep sleep, I rarely see him awake, and when I do he has no clue who I am, so its like you’ve already lost the parent and dealt with that and you’re just waiting for the inevitable. That side of things has thankfully been relatively straightforward apart from the never ending funding meetings, council meetings, NHS meetings, reviews etc

The bigger problem is my Mum. When this first started all the advice I could find was don’t visit every day as it will take over your life but of course she’s doing exactly that. She decided she would go Monday to Friday and I would go Saturdays. When we were looking at 6 months maximum that seemed manageable from my perspective but now not so much. My life is basically working Monday to Friday, I get back from work too late to have much of a life in the evening, then Saturdays at the home and Sundays at my Mums. If there’s ever a hint I will miss a Saturday she makes it clear she will go that day as well.

She won’t do anything for herself, to the point that she recieves letters and emails and says ‘I’ve had a mail from the council’ for example and when I ask her what about it get ‘I don’t know, I left it for you’. Every week there’s a list of jobs, normally things that don’t really need doing or things she’s created.

She’s insisting on staying in a house that is far too big for her, it was too big for two of them let alone one, that she increasingly can’t manage. I’m struggling to find time to get stuff done with my own house let alone having another to look after.

It’s hard to explain because a lot of it is passive aggressive, she always leaves herself a get out in case it’s ever bought up as an issue. Obviously most people will be reading this thinking I need to have a serious discussion with her but that’s impossible, as soon as I start to talk about any subject she doesn’t want to discuss she just shuts down and says I’m shouting at her when I’m just trying to have a conversation.

I feel like I have no life at the moment and every day I try and arrange to do anything it’s needlessly stressful and leads to feelings of guilt that I’m having a day doing something myself rather than running round after her.

She has zero social life, turns down all requests from friends to meet up, turns down any suggestion of going to local groups or anything to get her out of the house yet constantly complains she sees nobody and doesn’t do anything.

I don’t know where to go from here. Both her parents lived well into their 90s and she’s got no health issues at all so I’m potentially looking at up to 20 years of this which is a terrifying prospect. Not even got any siblings or other family to share the load with. My mental health wasn’t the best before this but it’s terrible now. It really does feel like not having a life and no prospect of that changing anytime soon.

Not sure if there’s any solution to this or if I’m just venting hoping someone else has been in the same situation and might have something to be optimistic about.

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Hi Dave,
I know exactly what you are going through. My parents lived 6 miles in one direction, my in laws 4 miles in the other direction, and all of them expected us to sort out anything and everything for them, despite the fact that our son was brain damaged and we were running a business. No work, no money was a concept they just didn’t understand! Sadly, soon after the third parent died, so did my husband, from a massive heart attack at 58. If you lived further away, mum would have to accept outside help, but she’d rather you did everything for her. Talking to her is like water off a duck’s back, she is too set in her ways. However she cannot tell you what to do, any more than you can tell her. It’s time to put yourself first, starting with planning a holiday. If you don’t have Power of Attorney, make this your top priority. Find someone who can do odd jobs for her - you can pay them direct with POA in place. I would strongly recommend finding a good private counsellor, this was life changing for me. He told me to dump the guilt and start living my own life, that I should stop being an obedient little girl and start doing things for me that I liked doing. Accepting that mum is incapable of change is difficult, nothing will change unless it is forced on her. My mum only accepted outside care when she realised I was too ill (after cancer surgery) to help, either she had carers come into the house or went into a care home. Hope that helps, feel free to ask anything. Counselling also taught me how to avoid jobs. Once I was given the usual hateful list of jobs, mum would want more done before I’d finished the first lot, however fast I went. The trick is to go at your pace, and work on a strictly one at a time basis. Just say “You asked me to do this, so I’m going to finish it before I do anything else…” Often she would get fed up with waiting and then employ someone else. Result! The list of jobs is just a way of keeping your there.

I suspect when you read my suggestion for a holiday, you thought it was unworkable. It isn’t. Mum has completely taken you for granted, and she needs to realise how much she is depending on you, that (from her point of view) she needs you to keep well to look after her. It’s a common trait of the elderly that they can’t see the impact that caring for them has on others, they become entirely “self focussed”, so if you can find a way of turning things round so they are for her benefit, they will be better received. Also put your answerphone on, so you are not always available by phone. If you feel you are at her place all the time, say “I can’t come tomorrow but will be back on Tuesday” or similar. In this way you control what you do, not mum. Just don’t fall into the trap of saying “because…” which gives her the opportunity of saying “Is that more important than me?” Just say you are “busy” or “have an appointment” or similar.

This is a list of excuses you can use

My phone is out of battery
I’m at the shops
I’m in the library
I’m busy taking care of myself
I’m tired

Hello Dave,
I don’t post on here much, but when I do it’s to “vent” about the situation with caring for my mum in law who is 96 in August.
She too, has a constant list of “urgent “ jobs that need doing now!
If we say we can’t get there, she says she will have to do them herself but will probably fall over.
Of course, we end up doing it……
This has been on going since she was in her late seventies when her husband died. However, we did get breaks initially as she used to go on three holidays a year and went to various clubs.
It is worse now as she has outlived her peers and her life has become so small it’s now all about her health - which is very robust by the way!
Unfortunately, my own health has taken a turn for the worse, as has my husband ( her son) but all of this goes completely over her head. My own doctor said to me that many people who live to a very old age tend to be quite self centred and impatient, and I’m in danger of her living to 100 and me popping my clogs at 70!!
I can’t offer any advice as I’m very bad at taking it myself, at her age anything could happen and we feel tied to having to attend to her. We have had no break in years as she won’t entertain respite or similar, as she “does everything “ herself ( from her perspective).
However, from my experience on the forum, take heed of what BB advices, you and your mum are probably younger than us so there is hope for you yet!
You have my sympathy, people not in this situation don’t realise the stress and anxiety caused by being “ on call” all the time, with no thanks or even recognition of what you are giving up.
Take care.

I also recognise the “ passive aggression “ you refer to and the resorting to tears if we ever question anything.
Of course, I’m well aware that it’s the mechanism for shutting us down, but most of the time it works because the alternative “ strop” or silence is unbearable.
Aren’t they clever!!!

Thara, you’ve entirely missed my point. Dave doesn’t need to use ANY excuses, for living his life his way. Explaining why is giving mum an opportunity to make comments like “is that more important than me”?

Thanks for all the comments. Don’t think there’s really an answer to this situation but it does help to know others are going through the same.

From the amount of time its taken me to reply you can probably work out how well things are going :joy:

All the POA for both my parents are in place so no worries on that front.

Had a bit of NHS counselling but tbh the counsellor wasn’t up to much, response to everything seemed to be ‘whats the worst that can happen’ which didn’t really help much!

She excels at guilt trips which of course means that the purpose of having some time away to do something for yourself is rather defeated as she will ensure you feel terrible about doing it.

Things certainly aren’t improving. I had a Sunday away in London, the first Sunday I’ve missed in 18 months so of course the week before she told me Sundays were the day of the week she struggles the most. She’s also taken to texting a vague ‘there’s an emergency’ every Friday night which of course means I have to call to find out if it is actually something important, it invariably isn’t. But perhaps the most concerning thing is she’s taken to driving past my house to check that I’m in. On a couple of occasions when I’ve said I’m not going to be around and I’ve actually been at home I’ve got ‘your car is on the drive’ texts. There is zero reason for her to ever drive down my road so my feeling is she is driving down here every day on the way to and / or from the home to check my whereabouts. Which of course now means I’m not exactly relaxed when I do have a couple of hours at home.

Dave that is terribly controlling behaviour and frankly not normal. It could be construed as stalking. She has no right to dictate what you do - you are an adult.

I don’t mean to be alarmist nor upset you, but if she is like this when she has your Dad to visit, what will she be like when your Dad isn’t around anymore?

Can split the Saturday or the Sunday between them and then have a whole day off for you?

Members on here often talk about replacing guilt with sadness - be sad that your Mum is so needy that she wants you to spend every last minute with her, rather than feel guilty about it. It’s sad she has no life but that’s her choice.

All you can do is decide what you are prepared to commit to her time wise and stick to it. As BB don’t give excuses - say I’ll see you next Saturday afternoon or whatever.

If she sys she drove past and your car was there say something like, 'I’m pleased that you are getting out and about."

I realise its so easy to offer advice and 100 times more difficult to action; but for your sanity I think you must.

What advice would you give to a friend or a work colleague if they were in your situation?