To not want to be a parental carer in future?

[janeseymour78]

My mother has been a carer for the last ten years to her parents. She partially did this so that my grandparent could stay at home. At the beginning it was very hard and time consuming and she said 'if I get I'll like that in future please just put me in a home'. I would argue she has done barely anything with her life aside from this in that time.

The other day she said that homes are terrible places because anyone that goes there dies within months of arrival. She also commented on how much costs had been saved by keeping grandparent at home. So this change of tune makes me think she now expects me to give up my life in a similar way if need be.

I have always had a complicated relationship with my mother - she wasn't a great parent due to her own issues and acknowledges this.

Recently I have started thinking she is getting older and I should consider talking to her about if/when she gets ill in future. About how we would handle it. AIBU?

@iklboo

a will is important - I can't see the point of a funeral plan though unless are much better off than your children (but even then I thought the costs would come out of the estate rather than children having to pay upfront).

Unless you have insurance the children have to pay for the funeral up front. Probate can take months, even with a will. They can reclaim from the estate, but very few funeral directors these days will act without payment.

Absolutely not the case. Banks release money for a funeral bill

I wasn't necessarily just thinking about the cost. It's the organisation too: cremate? Bury? What location? Who needs to attend? What would she have wanted? All whilst grieving.

I get it's often the norm with unexpected deaths, but it doesn't hurt to have a rough plan that could help family members

You helping her isnt the only option. Getting some paid help in at the right time can help people live well in their own homes for longer. My grandparents had cleaners etc which reduced the likelihood of them falling which can accelerate care needs. You can also help a lot remotely for example by ordering shopping deliveries.

@JudgeRindersMinder - my parents' bank didn't. I have to wait for probate to be granted. Luckily they both had insurance to cover the costs. Also, what if there's no money in the bank, or insufficient funds?

When my aunt died 3 years ago her bank realised £5K max for the funeral. The cost was £6.5K so had to pay that and reclaim it when funds were released a year later. She did have a funeral plan which included a quite expensive service. But I imagine like everything funeral costs will be going up and unless the banks have started increasing the amount they release for a funeral people will have to pay some costs up front.

[quote iklboo]@JudgeRindersMinder - my parents' bank didn't. I have to wait for probate to be granted. Luckily they both had insurance to cover the costs. Also, what if there's no money in the bank, or insufficient funds? [/quote]
It’s the responsibility of the person who organises the funeral to pay the bill. If there are no funds then the local authority has a statutory duty to bury or cremate “destitute dead”. Sorry for the brutal term, but that’s what it’s referred to as.

The upshot of having a shitty father is that I don't have to give a shit about him and when he decides he actually does need us in his life, they'll be no one there. Boo hoo.

My mum on the other hand has been everything and more and is a carer herself (to a friend) and absolutely does not want any of us to care for her. How that will actually work out when/if the time comes, who knows. It's easy to have a plan but best laid plans and all that!!! Especially if money is an issue.

It’s the responsibility of the person who organises the funeral to pay the bill. If there are no funds then the local authority has a statutory duty to bury or cremate “destitute dead”. Sorry for the brutal term, but that’s what it’s referred to as.

It was me paying the bill on both occasions. As I said, luckily they had insurance. But thank you for the info on the local authority duty, that's really helpful for future reference. It is a brutal term but that's government for you. ☺️

It used to be a lot easier to get someone into residential (rather than nursing) care but it barely exists now unless you can pay for it. Three elderly relatives in council housing went into residential care and lived there for years. That freed up two council flats for other people. One of them who lived a lot longer (more than 15 years!) was assessed periodically by social services as she kept getting flagged up as not needing nursing care but they'd rock up and then realise how frail she was and that she just wouldn't cope on her own in a flat with carers coming in.

That was a really positive move for them- none of them had children or anyone to visit more frequently than once a week so they'd have been very isolated if they hadn't been in a home. And those homes had a good 'feel'. They didn't stink of pee as soon as you went in. They didn't have a room full of people staring vacantly at a loud tv. The food was lovely!

For my elderly frail distant relative who went into residential care 3 years ago it really made a difference - she'd got very very anxious living on her own and was struggling with food (was having the Wiltshire Farm Foods deliveries but was getting past the point when she could prepare them). She had a cleaner and gardener but would have struggled with multiple carers coming to the house - it takes quite a bit of organising. So residential care was a really positive move for her (but she could afford to self-fund). She was very well looked after thru the pandemic whereas if she'd still been at home with carers it would have been a nightmare

May things are at play.
Firstly as a career iv seen family’s tear themselves apart keeping loved ones at home, because we promised never to put them in a home.
Family homes are not built for hospital beds, commodes, hoists and stand aids. There is never enough space and families get very upset when told they have to move things out of the way, it’s there home, but it’s also someone’s work space.

As a society we find more and more ways to keep people alive longer and longer, I’m sure over the next 30 years there will be more living wills refusing treatment.

The care crisis, cares are not payed well enough for what they do and the stupid split shift system in place at the moment. But no one wants to pay more, everyone wants to look after there inheritance.
Until things improve for carers there will be massive waiting lists for care, 10% of nhs beds are being blocked keeping people from all kinds of treatment and surgery’s.

This thread makes me so sad.

My father has been in a care home since December. I’ve known that he’s had some form of dementia for a couple of years. No one would help me. No one would listen.

I lived two hours away after I had no choice in moving as I couldn’t afford to live where we were anymore. Last year things got so bad that he was a danger driving. he was bashing his neighbours cars parking, he was going out at all hours of the night thinking it was daytime. he would call me screaming and disoriented and was hallucinating.

I had to call an ambulance in the end, one day when he was just screaming saying he was going to drive away and not come back, and he was admitted to hospital, I couldn’t get to him as I have a young baby and there’s no one else to help.

The hospital said he was fine, even though when I got there he was telling them all he was on a cruise ship or a space ship. He was just talking absolute nonsense as usual, hallucinating, social worker and consultant just wanted him gone and into my care.

I brought him home with me. He wasn’t safe alone.

He was shouting day and night, agitated. He threw his lithium hearing aid batteries all over the floor - if I hadn’t had have my eyes on my 12 months old all the time, the worst could have happened and she could have swallowed one.

He kept trying to get out the house, he kept trying to use the kitchen in the night, he could have burned my house down. He refused to wash.

A GP told me to lock him in a room (I didn’t, and yes, I complained).

Social services assessed and sent a carer once a day to wash him. He refused to be washed so nothing they could do.

All the time I was dealing with him and my three children and my husband was trying to work from home, taking calls with my dad shrieking in the background.

He fell and ended up in hospital. They called me 12 hours later saying he was fine to go home. I got there and he was hallucinating again. Telling people my hat JFK was sitting next to him with his gun shot wound and needed help. But apperently, all was fine.

I basically staged a sit in and said i wasn’t going anywhere until someone assessed him for dementia. Long and stressful story, brain scans showed vascular dementia.

Still they wanted me to take him to my home. I refused. I just couldn’t take anymore after 8 weeks of hell and my children upset and confused.

We tried home care. But he was distressed at having to pay for it. refused even though he didn’t have a choice, I have POA. He kept trying to drive his car. when we moved his car, he’d call car dealers to buy another. He barricaded the door so they couldn’t get in.

The care home works better. He’s got enough for two years self funding when he sells his house.

It’s still not easy for me. he’s in one near me. He comes to visit a day each weekend and all he does is talk about his money. Where is it, i want to go to the bank, where is my money going. You are stealing my money. I want to buy a new car. Take me to buy a car now. It doesn’t stop. It’s very stressful and it’s making me ill. But it’s worse if we don’t see him or take him out.

He didn’t want every thing he had to go on care . He wanted to leave what he had to his grandkids, this causes him distress too. And believe me, I’ve got nothing so an inheritance would have been great - but to what detriment? My marriage? My children, my mental health?

He doesn’t understand he’s got dementia. He thinks he’s fine. He blames me for putting him in a home. That’s when he knows where he is.

I visit him with my 8 year old on a Wednesday eve - when he sees us again for the day on a saturday, he doesn’t remember we came and accuses me of abandoning him.

But he’s being washed now. he’s eating well.

But, As someone so helpfully said upthread
that’s just existing. What’s the alternative? Sitting unwashed starving himself to death as he was doing before? Or living with me and putting my children at risk?

And he can’t go out in a car and kill someone.
He can’t burn his house down or wander off in between care visits.

I’ve been told i’m selfish. I’ve been told I’m evil. But these last few years when I knew he was ill and no one would help have broken me. Those 8 weeks he lived with me, my children were at risk from harm. He was at risk from himself. i hardly slept. Me and my husband were at breaking point.

My dad had me later in life, my mum died 30 years ago. He’s 87 and I’m 41 with my youngest child still a baby, we have no other family.

This whole situation is killing me. I wish he was dead for all our sakes, most of all his because his life is a living hell.

Looking after someone with dementia is terrifying. It’s not like having your nice old grandad sat in the corner with a paper. People have no idea what it’s actually like and therefore, they have no right to judge.

I did it for 20 years and whereas I did it mostly willingly it stole a large chunk of my youth (I was a late in life child).

Look before you leap and beware the slowly boiling crab.

Wellthisiscrapeh's story is the reality.

@Wellthisiscrapeh I don’t know what to say, that’s so sad and awful for you all. You’re not evil or selfish, I hope you do know that.

@Wellthisiscrapeh You're a good daughter. You are keeping your dad safe. And keeping other people safe from his actions. My mum stayed at home with dementia. I wish I had been able to get her transferred into a home after her last hospital stay, but sadly she was returned back home to die. It was awful.

It’s not like when they are in a home, thats it, you are free.

The worry, the emotional pain, the turmoil of dreading each visit because you just don’t know how they will be that day is sometimes debilitating. I still can’t enjoy my life, it’s still all consuming.

So don’t assume even a care home is the easy option.

Nothing about having elderly parents with dementia or other diseases is easy.

@Wellthisiscrapeh

This thread makes me so sad.

My father has been in a care home since December. I’ve known that he’s had some form of dementia for a couple of years. No one would help me. No one would listen.

I lived two hours away after I had no choice in moving as I couldn’t afford to live where we were anymore. Last year things got so bad that he was a danger driving. he was bashing his neighbours cars parking, he was going out at all hours of the night thinking it was daytime. he would call me screaming and disoriented and was hallucinating.

I had to call an ambulance in the end, one day when he was just screaming saying he was going to drive away and not come back, and he was admitted to hospital, I couldn’t get to him as I have a young baby and there’s no one else to help.

The hospital said he was fine, even though when I got there he was telling them all he was on a cruise ship or a space ship. He was just talking absolute nonsense as usual, hallucinating, social worker and consultant just wanted him gone and into my care.

I brought him home with me. He wasn’t safe alone.

He was shouting day and night, agitated. He threw his lithium hearing aid batteries all over the floor - if I hadn’t had have my eyes on my 12 months old all the time, the worst could have happened and she could have swallowed one.

He kept trying to get out the house, he kept trying to use the kitchen in the night, he could have burned my house down. He refused to wash.

A GP told me to lock him in a room (I didn’t, and yes, I complained).

Social services assessed and sent a carer once a day to wash him. He refused to be washed so nothing they could do.

All the time I was dealing with him and my three children and my husband was trying to work from home, taking calls with my dad shrieking in the background.

He fell and ended up in hospital. They called me 12 hours later saying he was fine to go home. I got there and he was hallucinating again. Telling people my hat JFK was sitting next to him with his gun shot wound and needed help. But apperently, all was fine.

I basically staged a sit in and said i wasn’t going anywhere until someone assessed him for dementia. Long and stressful story, brain scans showed vascular dementia.

Still they wanted me to take him to my home. I refused. I just couldn’t take anymore after 8 weeks of hell and my children upset and confused.

We tried home care. But he was distressed at having to pay for it. refused even though he didn’t have a choice, I have POA. He kept trying to drive his car. when we moved his car, he’d call car dealers to buy another. He barricaded the door so they couldn’t get in.

The care home works better. He’s got enough for two years self funding when he sells his house.

It’s still not easy for me. he’s in one near me. He comes to visit a day each weekend and all he does is talk about his money. Where is it, i want to go to the bank, where is my money going. You are stealing my money. I want to buy a new car. Take me to buy a car now. It doesn’t stop. It’s very stressful and it’s making me ill. But it’s worse if we don’t see him or take him out.

He didn’t want every thing he had to go on care . He wanted to leave what he had to his grandkids, this causes him distress too. And believe me, I’ve got nothing so an inheritance would have been great - but to what detriment? My marriage? My children, my mental health?

He doesn’t understand he’s got dementia. He thinks he’s fine. He blames me for putting him in a home. That’s when he knows where he is.

I visit him with my 8 year old on a Wednesday eve - when he sees us again for the day on a saturday, he doesn’t remember we came and accuses me of abandoning him.

But he’s being washed now. he’s eating well.

But, As someone so helpfully said upthread
that’s just existing. What’s the alternative? Sitting unwashed starving himself to death as he was doing before? Or living with me and putting my children at risk?

And he can’t go out in a car and kill someone.
He can’t burn his house down or wander off in between care visits.

I’ve been told i’m selfish. I’ve been told I’m evil. But these last few years when I knew he was ill and no one would help have broken me. Those 8 weeks he lived with me, my children were at risk from harm. He was at risk from himself. i hardly slept. Me and my husband were at breaking point.

My dad had me later in life, my mum died 30 years ago. He’s 87 and I’m 41 with my youngest child still a baby, we have no other family.

This whole situation is killing me. I wish he was dead for all our sakes, most of all his because his life is a living hell.

Looking after someone with dementia is terrifying. It’s not like having your nice old grandad sat in the corner with a paper. People have no idea what it’s actually like and therefore, they have no right to judge.

Totally agree.

Seen this scenario play out a few times.

Alzheimers and dementia can be utterly chaotic and those who suffer from it become masters of chaos.
It's like dealing with a nuclear bomb going off every day.
They never can get better, so they get much worse. And the disease seems to go on and on and on and on and on, for years.
It's horrific.

And you have to be really assertive to get any help. Social services will push as much onto you as possible - we had my Dad home to die and had to insist on two carers for the home visits. Social services wanted to send just one, but he needed manual handling, hoist, continence care etc. He was tall and quite solid! Mum couldn't physically lift him, I was at work and couldn't guarantee being there. But if we hadn't insisted they'd only have sent one carer.

We've had this with elderly distant relative, now too poorly for residential care. Hospital would have been quite happy to discharge her to one of us. Residential care, understandably refused to have her back as she now needed nursing care. Even though we're at a distance, aren't set up for it, work and physical ability meant it would be impossible, their default was to assume family could deal with it. So she blocked a hospital bed for weeks whilst they found a nursing home that could take her.

@Wellthisiscrapeh I agree that this is so sad.

I'm in my 60's and we (and so many of our friends) are facing this as a real dilemma.

It's easy for people to think there's a real choice in this: 'just put me in a home when the time comes' or 'I'd look after my parents when the time comes'.

In reality we are at the mercy of a broken social care system. And we can't anticipate the challenges of looking after parents who are incontinent, violent, or worse.

My PILs are 93, live in thier own home, 2+ hours drive from any of their dc (who are all still working). FIL has dementia, MIL is immobile. They had an assessment in autumn last year but it's taken until now (6 months delay) before they got help because there were no social care staff available. In the meantime, we have been paying for private care. PILs are deteriorating rapidly. MIL had a TIA and was in hospital but has been discharged home now. According to her social care assesment there is a requirement for 6 hours care a week. The actual need for support is hugely, hugely more.

We've asked for a re-assesment, but there's a 8 week waiting time.

At the moment dh and his siblings are taking turns in providing 24hour support. FIL wanders in the night (would go outside if he could) and is not safe alone.

It's easy to say that they would be better in a care home. 'Choose somewhere nice' said a previous poster. Two problems: the first is that 'somewhere nice' would cost in excess of £3K a week (because there are two of them); the second is that their current assesment is for 6 hours care per week, not 24/7 so the contribution from SS would be minimal.

FIL's dementia is fortunatley benign, he is not violent or disruptive. But being in a care placement that specialises in dementia would probably see him living alongside those who were disruptive. He almost certainly wouldn't be cared for alongside his wife.

My experience (and those of similarly aged friends) has changed my view of end-of-life care. I will do everything to avoid putting that burden on my dc.

@Wellthisiscrapeh "No one would help me. No one would listen" - my experience to a T - my mother was obsessed with banks , money etc when we gently tried to put care in at each stage . In the end we just lied to her about what the care was costing

Someone up thread asked what was the mexican standoff - well in the height of the pandemic when my mother became so unwell and psychotic AND NOBODY would come out from MHSOP ( mental health services for older people ) and the GP phone kept ringing out and they kept directing me back to MHSOP- one clinician took pity drove 30 miles from the clinic to give me an emergency dose of risperidone ( an anti -psychotic) to calm her as there are no men in white coats- Mum confabulated ( false memory) going to a care home that she had visited so we arranged for her to be readmitted to a very extremely nice care home where she had previously had self funded respite . At this point with financial POA I was paying £300 a night for overnight care to stop her leaving the house - The next day I begged for the MHSOP nurse to meet us ( who refused ) and help us coax in her the home " the nice cup of tea scenario" I had to leave my small children in a friends back garden ( remember when we couldn't mix) to take her there and she refused point blank to go in on arrival and basically staged a sit in in the care home garden forcing us to take her home again and reset up the care package immediately. The experienced care staff said they'd never seen anyone quite as strong willed and the GP was aghast . When she came home again she insisted it wasn't her house ! After that point I washed my hands of mum for own mental health, my husband said that was his line in the sand and then the city went into lockdown and the events followed that I previously outlined happened where she basically nearly died and I could not reach her . It took 8 weeks for the authorities in the hospital to sort out a care package and a best interests meeting to sort out capacity - they did everything they could do avoid a DOLS

You are so strong and so so brave. This exactly what happened to me . Exactly the same an older parent whilst I am an older parent - ( not exactly uncommon these days) - The obsession with money - Its death by a thousand cuts It is kafkaesque - We had a considerable amount of money to spend on care ( I spent all of it ) but it didn't not meet her needs until she got 24hr care - which needs a TEAM of people.

I hope your dad settles down - my mum did in her last year a bit and became more lamb like - the stage you describe was exactly the worst i think. The other one when you become the parent and they become the child - the swapping of roles is so hard and the paradox of dementia makes it worse . Your parent truly believes you are EVIL, cruel and mad at the height of it all -its awful prior to that in the early years you are accused of being patronising , bossy , ungrateful etc . On a lighter note I remember calling 111 when mum had pneumonia and they insisted speaking to her and she shouted at them I was menopausal and a fantasist between gasping for breath with blue lips! Crazy times

Now its all over I think I did right by her and i think she knew that at the very end - I hope the same for you @Wellthisiscrapeh x

Thank you everyone for listening to my story and those who mentioned me earlier . There are so many problems being stored up in our care system as people live longer - we are ill equipped to deal with it all- You wont go to dignatas or do anything like that - I guarantee it - you will do all you can to cling to your independence or use family rather than "strangers" when likely that it the kindest and most practical option for us .

Another issue with caring is that it creeps up on you.

I'm cooking for the family, I can easily cook a bit extra and drop it off with mum and dad becomes cooking dinner for them every night.

I'll stay with mum until bed time becomes I have to stay until she decides she is ready for bed then I have to take her to the toilet, get her ready for bed and put her into bed because she can't lift her legs off the floor.

Call me if you need anything goes from "can you help with this form" to "I can't find the tv remote, the phone won't work, I've dropped my hanky"

I don't think many people wake up in the morning and find that they are expected to care for a parent 24/7 . It starts with the sort of thing that you do because you love someone and if you are in a situation like mine it can end up draining away every ounce of affection you had for him or her.

Add to this the fact that my mum, although a loving person, always stated that she could never do what my aunt did in caring for my grandparents. Yet expected me to do all that and more for much longer without ever acknowledging that without me she would be unable to live in her own home. She told the social worker that I would pick up little bits of shopping for her but otherwise she managed fine on her own.

@geekchicz it’s so hard lying to him though. We pass a cash point in the car, he wants to stop to check his balance.

Dh has sort of stopped this by printing out a few in one day a few weeks ago before a huge chunk of fees went out.

To see his bank balance going down by 1,200 a week is going to finish him off.

He keeps saying he’s in prison. The staff and us tell him he isn’t, he says “okay then, give me my car keys and my cheque book, I want to go out”

He has always been obsessed with money, his whole life and this has all just made it worse.

It’s all just so hard. I dread seeing him but I know I have to.

@alwayswrighty

I'd personally rather go to dignitas than go in a home or be a burden on my husband or son.

My Mum and Dad have spent their entire retirement looking after my Nan. Both parents have deteriating health and are still looking after Nan. They have categorically told me they do not want me to look after them.

Dad thinks he is going to die before Nan. They deserve some happiness.

That's my attitude too, @alwayswrighty. I don't want to make my family's life miserable because of my care needs. If I start to suffer from memory loss, etc., I'll be straight to the doctors for testing - and if I'm diagnosed with Alzheimer's or dementia, I want to die before it gets serious. Back in ye olden days, most people didn't live long enough for their families to endure years of caring, but nowadays, we can go on into our 90's - DH's Granny suffered from Alzheimer's and had no idea what was happening during her final decade (she lived to 94). It was so painful for her family and the son who provided most of the care (and rightly inherited her entire estate) died of a stroke at 80. He was in poor health by his 70's, tbh, as even though his wife, adult children and siblings helped, he was completely worn out. I doubt he'd had a full night's sleep in 10 years.

I’m not sure if this would help anyone here but with my granddad we had to fib about dementia. He was adamant he didn’t have it but one day the nurse described it as a neurological condition affecting his brain synapses and he just accepted it.

Afterwards we all referred to it as his neurological condition and he never had the really violent response to it.

@SquirrelG

Hell would freeze over before I'd put my parents in a home. I've done the caring before and yes it's awful, but its better than knowing they are being ignored for long periods of time and possibly mistreated and wasting away, as I've seen happen.

Surely if someone is going to put their parents in a home then they do some research and choose a good one? My friend had carers coming to her DM, plus help from her, and the best neighbour in the world who was in and out all day checking on her. She then broke her hip and ended up in a home - and my friend can't believe the difference in her. She has put on weight and rather than dying in a few months, as my friend expected, she is doing really well. My friend was very reluctant to put her DM into a home and now sees that it was the best possible outcome.

I don't live in the UK, but are care homes there really as bad as some posters suggest? Any here which I've had experience of - my own DM was in two, and thrived in both (the first one closed due to low numbers), and all the homes in my town have good reputations.

People don't always have a lot of choice, there may be limited availability and cost is a huge factor.

As for being good, I am in Canada, rather than the UK, but a wealthy socialist kind of place. Care homes are often understaffed and the care is frankly sub-par. People want it to be good but there is only so much that can be done. The worst cases I know off involve a neglected elderly woman who never recovered from serious bedsores, and a younger disabled woman who was forgotten and died. These are not the norm, but they are horrific, and they emphasize to people that even with loved ones in a home, someone in the family needs to stay on top of their care.

Plus, coming out of covid, we see even more what can happen to the elderly. It's only in the past month that some of our care homes became really open to visitors. None of the residents have been allowed out in all this time except to medical appointments.

@Cameleongirl yep, my Nan is 96 soon. She is starting to get forgetful and cannot be left alone. She went into respite care for 4 days when my parents came to visit for their anniversary and she kicked up merry hell. I really feel for my parents tbh.