I hate my life right now and it's mainly due to my elderly parents constant needs and I hate myself even more for saying that.

[MybosswasMrMcGee]

The long term relentlessness of having to deal with elderly and unwell parents is so draining and has resulted in my life being put on hold for various reasons (including the stress of it deeply affecting my health) and if I'm honest, and hate myself for admitting it, I truly resent the whole situation.

I'm going to put this down in black and white here because it's the elderly parents forum and I'm hoping someone looking at this may be able to understand and empathise. I don't say this aloud but alongside my deep love and compassion for my elderly parents I feel secret anger and resentment.

Eight years of running this parallel life along side my own. Trying to help keep my parents plates spinning in the air alongside mine too.

Eight years of having to watch my poor mum slowly lose all her faculties due to Alzheimer's and watch her poor little body worn down by the other diseases she also suffers from and my father getting angrier and more stubborn each year because this is also taking his life down with it too but its seems he is so deep in his own grief that he has little understanding that it's also pulling me under too but because 'I don't life with it 24/7 like he does', he just can not see that I am grieving too. Of course I don't life with it physically 24/7 but they are the first thing I think of when I wake and the last thing before bed. He rings me all the time when I'm not at theirs (they live around the corner so I'm there a lot of the time), coming up with all kinds of stresses, worries and requests that he wants dealt with asap.

Yesterday, when I thought I had a day off from seeing them he's calling me in a blind panic because the last few days he's not been able to hold his urine in as well as he usually can and wanted me to find a doctor then and there to deal with it. I tried explaining to him that unless he sits in a&e for hours on end he's not going to be able to see someone until Monday when I will try and get him a GP consultation and that at 85 it's more than likely to be an enlarged prostate because unfortunately 90% of men his age will have some kind of prostate issue (85 year old FIL has just had his removed) but it's not good enough to wait till Monday and it's all he's consumed with right now. I really feel for him because he's living in fear of his own mortality since mum's been unwell even though he's actually in very good health but he stresses so much and does expect things to be done for him then and there which is unrealistic and not going to happen.

I don't really know what I'm asking from this thread other than to find some common ground in others, wanting to connect with others who are going through similar as none of my friends are experiencing through this right now, most of their parents are still only in their 70's (I never realised my parents were a good 8-10 years older than my friend's parents when I was younger but I'm definitely seeing it now).

We have everything we can practically put in place for my parents (carers in every day to deal with mum's double incontinence, social services assessments have been done, all benefits etc they are entitled to they have) but it's just the overwhelming weight of dealing with mum's long term, life changing diseases which sadly takes down everyone involved. Even if mum were to go into a home the sadness and living grief won't leave.

It's wearing, relentless and soul destroying and for me I have to sadly acknowledge the fact that the only relief I will get from this is when they are no longer here and that breaks my heart, life will never be the same though because my parents will be gone forever.

Anyone else in a similar position?

I hear you, OP.
💐
Totally different circumstances here, but basically I moved to another country, before my (abusive) parents reached this stage.
Only child as well, to edit.

I’m sorry you have this in your family too, it is a truly wicked disease. Hugs back your way.

Mum also has a pace maker due to heart disease and two years ago was diagnosed with breast cancer. I hate myself for admitting to it but when she was diagnosed with the cancer (and it is quite advanced) part of me thought ‘thank goodness, her suffering is now over’. I despise myself for admitting that. As it turns out with advances in cancer meds her tumour is being kept at bay with medication and has actually shrunk to almost nothing. In any other circumstances that would be cause for celebration but poor mum continues to have a will to live even though she has no life due to the dementia. It’s so cruel.

Sending a hug, have been in this position, but it's over now. My situation wasn't as bad as yours. Sometimes I felt I would die before my mum did, from exhaustion.

I try to avoid being too helpful so nobody comes to expect me to be. My sister and I are on the same page, which helps.

I dare say, your upbringing helped to reach this decision?
Sorry if projecting, mine definitely did.

My heart goes out to you, I’m so sorry you are going through this.

I agree with all you have written. People have no idea how inadequate our elderly care is do they? My parents pay over £4000 per month for carers to come in for 30 mins, 3 times a day. All the care homes we have visited so far are well over that amount per month and I wouldn’t put my dog in them, I honestly don’t know what to do for the best. It’s heartbreaking to see and as someone now in my 50’s, I’ll be honest, I’ve become terrified of growing old in this country and of old age in general.

Just a thought here from a grandma.

The horrible situation of many who have posted here might actually serve a positive purpose for others.

If you have parents who are about to retire but do not have the health problems or dementia that the parents of many posters have, it might be worth sitting them down and saying that you know there might come a stage when they need help and asking them what form they would like that help to take. This can all then be written down and agreed so that if that time were to come you know that you are doing what they want. When an elderly person starts to lose their faculties, they are terrified and that fear sometimes emerges as anger or demanding behaviour and certainly a loss of insight into what their behaviour does to those around them. If you have some guidelines to go on it might make it easier for everyone.

It is also worth being fairly explicit about what they expect from you and what you feel you might be able to offer - a difficult conversation I know, but better to have it when they have their reason.

And talking with them about Power of Attorney (for both care and finances) at this early stage of retirement is a huge bonus.

I do know that there are some parents with whom there is a poor relationship and could not broach this, but where there is a good relationship it is very much worth doing all the above sooner rather than later. Retiring parents will probably get it better than expected as they too have been the offspring of elderly parents in their turn.

Sending hugs, love and lots of empathy. It is a shit time and an exhausting one.

My mum has dementia and has needed more and more support as the dementia has become more advanced. I have been dealing with this for the last five years and I am exhausted. The combination of her needs, everything falling to me to organise or resolve, the grief of seeing her as now a shell of herself, the exhaustion of dealing with social services, the care company and medical professionals many of whom do nothing that is actually helpful, often things that are actively unhelpful or ridiculous and just cause more problems is just overwhelming.

Her physical health is however remarkably robust and whilst I feel awful saying this the thought of another five years of this makes me want to cry.

I am a three hour drive away from my mum and although I visit every two or three weeks for an exhausting few days I do get some breaks as when I am not there I cannot resolve minor issues. It must be so hard OP to be on call 24/7 with an expectation you can just go round and sort out the problem immediately. Please try and set some times when you are just not available so you get a break, however, hard that may be.

Maybe? Probably something intrinsic too. I don't have a carers' bone in my body. I hope this isn't tested too badly but I'm never cancelling something important to me to deliver personal care or whatever for them. My own end of life plan is dignitas and I guess I don't see why I should prop them up if they won't take responsibility (I appreciate this is harsher than is palatable to admit).

I would definitely rather die than have my own kids change my nappies. I am surprised that this seems a niche view.

I know that I’m currently in the thick of things and probably not in the right frame of mind to make any clear judgements over this but atm I can not see any benefits from having unwell parents still alive into old age…..not a single positive sadly. I can’t even have a conversation with my mum as she is non verbal. All I can do is painfully watch her demise, very slowly over a period of almost a decade.

Yep it appears no one is allowed to say this, but for those who get roped in as constant unpaid carers and are still trying to have a life of any kind themselves - the fact is , it often is!!

Most of the care homes have genuinely felt dreadful to me. Ancient looking bedrooms with views of brick walls, residents lined up against the walls in the living areas, no music, no stimulation just staring into space.

The last home we turned up at two weeks ago shocked me because most of the staff couldn’t speak English, only very limited amounts. They young carer who answered the door couldn’t comprehend what I meant when I said ‘Hello, we have come to look around as we are looking for some respite care for my mother’, she had to go get another staff member over so I could repeat this and even he struggled to understand. I don’t have a strong regional accent or anything and I spoke as plainly as I could when I realised English wasn’t their first language. How on earth could I leave my mum somewhere like that? I play her her favourite music and YouTube clips of her beloved Elvis and try to stimulated her senses as much as I can, even our carers hug her and sing to her and dance to make her laugh. I can’t imagine her lined up sitting in a high backed chair just staring at the wall all day.

I really sympathise but find it difficult to understand how bad these care homes can be. I've had to spend several hours each in several homes, and all isn't what it seems at first. The cheapest one was a bit scruffy and had shared bathrooms, but all the residents were in the lounges which meant the carers had proper meaningful time to spend with them, and there was a friendly atmosphere. In the posh one, it looked like a hotel so appealed to adult children, but most of the residents were on their own in their rooms, lonely, with the carers spending all their time answering call bells.

Crikey, so much like my own life even down to the caravan. We have a touring caravan and haven’t been able to use it much the last couple of years due to my parents needs. My every are 18 and 21 this year and are independent so I’ve actually booked a few weekends away over the next few months as I’m desperate to get away and to have the joy and freedom to do nothing but I’ve not been able to bring myself to tell my dad as he hates that we have it and can potentially ‘escape’ whenever we want to and that leaves me feeling very guilty.

I feel that despite my father having had a golden life with few responsibilities, no money worries and good health all his life he resents anyone having anything even remotely similar now that his own life isn’t so golden. I can’t imagine begrudging my dc a life of their own. I don’t want them helping me out in my old age, I want them living their own lives.

My sister and I work together, so we do have a set routine now. There are certain days I go to our parents (I was going virtually every day at one point) and she goes the other days (she works longer hours than me as it’s her business and I’ve been helping her during her busy days). But even though dad knows this he will still ring on the days I work and it’s usually something ‘urgent’ like yesterday and his prostate issue which surprise, surprise is ‘better’ today!

I have lost both my parents now but I understand the frustration, guilt, anger, grief the whole array of emotions that goes with this. My elderly parent would not accept help, the only person they wanted was me and when they did want something it had to be done now. I would get into bed at night not knowing if I would be woken up at 3am. I never knew if I was going to get called out of work which I frequently did. I dreaded arranging an evening out incase I got a call and had to cancel. Heaven forbid I should arrange a holiday, they would be constantly dropping hints that I may not be able to go if they needed me.

I was heartbroken when I lost both parents but towards the end I was starting to feel so bitter and that's hard to admit to. Sorry I can't be a lot of help but I hope at least you know there are people who understand what you are going through, people used to tell me to stand firm, don't just drop everything when they call but it's so hard. Especially when there is only you.

If you need to vent I'm sure you can post on here as often as you need to

I'm glad you have that support but maybe gently remind you dad it's not your turn? Sounds to me like he's clinging onto being in charge which I guess is understandable.

It’s a very good idea.

I realise that we went through this with complete ignorance regarding dementia, we all have no experience of the disease and like many people not affected by this disease I genuinely had no idea just how insidious it is.

I am looking into arranging some kind of living will as soon as I can with my wishes for treatment and care. I really could not face the thought of my own dc going through this level of stress for me. I want it settled before I lose any capacity.

I did so much searching for care for my late OH and I have sat in the car park and wept after some visits - how the hell they get past the inspectors I do not know.

But there are gems to be found. I used to work as a social worker and saw some of this from a professional perspective. The best home I used was by far and away the scruffiest, but it was home - I got there one day and everyone was eating fish and chips out of newspaper - a resident said how much she missed this so they were all bundled into the minibus and off to the chippie - the planned meal was stowed away for another day; one resident had a parrot in her room which used to say "Bugger off Bert" (her ex!) and she had a sexy garter holding her catheter bag to her thigh; and one old man who had been a gardener was simply let loose on the garden and used to shift plants around all day even though it was not necessarily to their benefit! - he was happy and that was the priority for the home owner rather than the optics.

It is all about the people - the staff and their attitudes.

I did find somewhere for my late OH in the end but boy did it cost! It was purpose built and had a cafe, bar, film room, gym etc. with lots of socialising. But above all else it had lovely kind thoughtful staff who supported not just my OH but us too during his last months - they even gave me a room to stay in during his last few days. As I knew the system I was able to fight for full CHC funding which I got on appeal - but if you do not know the system it is mega daunting.

I do understand the challenge of staff whose language skills are poor - very hard for elderly and deaf people.

Finding the right place is very hard and the poor quality of many simply adds to the guilt. The privatisation of homes has been a massive retrograde step.

I do hope that those of you searching for a suitable place for a relative manage to get there in the end.

I absolutely feel your pain. I’m sorry you are going through this too.

Me too. I’ll have something, anything in writing to forbid this, I refuse for my children to go through this hell.

I’m not saying they are all bad, just the ones we have visited so far.

My parents will have to self pay as they have savings but those savings aren’t exhaustive so there is a cut off point to what they can afford. Sadly, for the places within their budget we have yet to find a care home we like. We are visiting a few per week and hopefully will find one that ticks our boxes.

Few so far have had a warm or friendly atmosphere and the carers have seemed uninterested. There were two we liked but they have long waiting lists (mum is on them though) and another which was lovely and has the best rating amongst members on our local FB dementia groups but at £1800 per week is sadly out of my parents budget long term and they need proof of 2 years worth of savings to cover the cost.

Thank you. I’m sorry you went through that too, it’s exhausting.

I honestly think they should be brought back into state ownership with regular random inspections and a set criteria of standards , costs and training and staff given actual qualifications and support. Yes some would be nicer than others as things stand and a fixed cost factored in for that but I do think it would help the grottier end of the sector .