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?

My parents moved closer to me so I could see them more often but I'm not, and won't be caring for them. I'm a single mum, disabled and working full time. I have no energy left.

They have carers 3 times a day who do all the cooking, cleaning, washing and personal care (help with showering). I visit a couple of times a week, sometimes more, help with bill paying and other paperwork.

We are past all this now, but

• DM had dementia. DB and I cared for her at home until it became impossible. Those of you who say you’d never put your parents in a home you have probably got no idea what it is like caring for someone with dementia. It can be bloody hard even when they haven’t (see below) She went into a nice home aged 90 and survived three years.

• at the same time I was caring for DM, DMIL, same age as my DM, was very frail and prone to falls. She lived a three hour train journey away and flatly refused to consider going into a home, moving closer to us or moving in with us. Even with carers coming in several times a day they could not keep her clean, fed, hydrated and medicated. DH was going up every other weekend Thursday to Mon, she wouldn’t let him do her shopping on line or anything and he would spend all his visit rushing around sorting things out rather than spending quality time with her. She eventually died aged 91 in hospital. My DH had finally got a place in a home sorted but she died first.

Depends entirely on the level of care they need. My granny lives to 101, needed a bit of help with 'meals on wheels' or someone popping in a hog meal. Granny on the other side had ten horrible years of dementia before dying at 82. I simply don't have time to do the dementia level care.

@Wellthisiscrapeh I remember how awful it was and not wanting to lie . Mum had vascular dementia . I got financial poa and even then mum would demand to see the statements , go to the bank and remind me she still had the right to see her accounts

Looking back tho I think I could have just faked them - she was incredibly good at masking her dementia and didn’t understand the numbers or text , it so hard yet she could write a legible shopping list at this time so I thought she did understand . I discovered later two completely different parts of the brain are responsible for these skills . Basically that’s what your brain is doing - dying slowly . My mum knew who we were - she wasn’t forgetful or suffering memory loss - she lived in a confusing world that did not make sense anymore . She couldn’t work any technology like a key or a microwave but insisted she could The damage from her stroke affected her visual spatial capabilities . I bet your dads cannot interpret the numbers ( although he does not realise it ) now rather than forgetting that’s why he’s obsessive . His money makes him feel secure in an uncertain shifted world

. We did a lot of distraction with old statements too for mum to hide how much was being spent on care and this was just 4 x day visits . It was a strain and felt so unethical especially with poa as it kind of goes against the letter and spirit of a poa legal obligation . ( don’t get me started how some banks treat you too even whilst you have - you have to produce the care bills for some - making you feel awkward and embarrassed when you ask to transfer thousands even though I know they are protecting their customers interests )

You cant reason or use a logical argument . My mum refused care and would tell the GP if I wouldn’t look after her or was too ill she would run away . Complete and utter denial. It was exhausting . I could write a book on it . X

@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.

I'm so sorry. It's awful isn't it?

Basically both of my parents are lost mentally and are very difficult to be around. They are both difficult, stubborn, paranoid and in deep denial. Not a single kind word passes their lips.

I am convinced that I will go the same way eventually and would rather be dead before it gets too bad. I'm not depressed or irrational about it and I know it's some way off before I have to face it.

It's not that I can't bear it for myself, it's that I don't want my children to feel the same way about me as I feel about my parents.

Also @Wellthisiscrapeh can I reccomend looking at Teepa Snow videos on YouTube to help with communication to deescalate and also get g system . She’s very good and actually funny too . There’s an elderly parents board in mumsnet and thread called the cockroach cafe I lurked there often and helped to know I was not alone

Gems system

@knittingaddict I am the same. There is an age that I will not allow myself to live past and I am resolute in that. I won’t put my children through this.

@geekchicz I will have a look, thank you

I'll never be a carer to my mum.
She lives 3 hours away and I will always work full time. She has too large a support network where she lives to uproot herself and move closer to me - it would be crazy. Even if circumstances were different, I'm simply unwilling to give up my life for the drudge of unpaid care work.
Selfish? Damn right. I come first.
What I increasingly find frustrating, and its the case with my mum (but not my dad) and my ILs, is they have slim, active, resilient children, but have themselves gone down the route of being very overweight, getting no exercise at all of any kind, and then being flawed by the slightest health complaint. They just sit in a chair, taking no accountability for their health. I'd resent so terribly being someone who has been driven to maintain my weight and keep fit, caring for someone who has always done the opposite.
God I sound like a monster, but im jyst being honest and that's what anonymous forums are for.

I would use the fact that she is negative about care homes to get her to think about how she plans to live in her own house. Tell her about the adaptions that she may need to put in place sooner rather than later. I wouldn't want to care for her full-time if I was you so I think you need to make her think now about the reality of how care is going to look. Was her experience of being a carer god or bad? Can she be persuaded to use her experience as a way of making practical plans for herself?

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.

It was me who said "choose somewhere nice". I am not in the UK, as I said, and frankly your system sounds awful to me. Care homes are run differently here - as long as they are affiliated with the local hospital board then you pay the same, whichever home you go to, as there is a price cap. They are expensive, and you pay the going rate until your savings reach a certain level (which is much higher than the one in the UK). The homes are regularly audited, and as I said, all the ones in my home town are good. Of course there are incidents, and not everywhere is perfect, but from what I have seen in my dealings residents are generally well cared for and respected. It also seems easier to get into a home here.

Frankly, your system sounds rather broken - and that's not a criticism, just an observation.

I just feel for all of you on this thread going though living with a parent with dementia.

It’s worse than someone dying, for everyone. It’s evil, it really is.

To lose someone while they are still alive and to know that it only gets worse. I wouldn’t wish it on anyone.

Frankly, your system sounds rather broken - and that's not a criticism, just an observation.

It is. It's on its knees, unfortunately.