How much responsibility do you feel to look after parents in old age?

Yes this is the case for my DPs with this attitude. They still support us all in many ways now that we are all adults. They expect they would be supported in turn if they needed. And I think that's a reasonable expectation, as far as we (me and siblings) can manage if the time comes. They devoted themselves to us all, they still do.

My parents are like yours. Although I reckon my DF is the type to top himself if was still able if he was facing a situation of long-term care and decline.

Actually now that I think about it nobody in any side of my family has ever been in a nursing or residential home at all (so far) (at least as far back as my great grandparents anyway).

Thankfully I am one of 3 and we all live local to each other and my DPs at least. DH, DB and DF are all HCPs which helps too.

Great post London. Yes it can be very difficult. Nobody should judge. While we helped we our dad nobody could do it long term then lack of sleep going into your job. Something gives in the end.

I do think that caring for someone sometimes means making the hardest decisions. And not always the ones agreed upon when the person was younger/fitter/less ill. Sometimes those can mean taking the person into your own home, sometimes it means finding care either in the home or in a care home.

I have a friend whose mum would forget to use toilet paper and would then smear the poo all over the loo, handle to the door, walls and towel (she forgot to wash her hands but remembered to dry). A friend's family member was having to lift his wife (who had a stroke) onto the loo at the age of 75. Even with family help the constant 24 hour care can be very hard. It's no failure to admit defeat. Care home staff get to go home - my friend and my other friend's FIL couldn't do that. The lack of rest can take its toll on the ones 'left behind' in caring.

All we can ever do is our best and that can sometimes mean taking hard decisions. It's what we do with our children and it's what they may have to do with us. No one should feel guilty or be made to feel guilty as we can never walk in each others shoes.

@iwishiwasonacruise 💐for you, sorry for your loss. I’m sure your mum knew how much you loved her. Try not to feel guilty (easier said than done, I know) you sound like a lovely daughter.

I have some experience of caring for my much loved mum before she died a couple of years ago. She was a fantastic mum & granny, unconditionally loving and supportive of us all and I miss her dreadfully. Her illness was brutal and those months of caring were horrendous and nearly broke me, and of course affected everyone in the family. I had my own cancer diagnosis a year or so ago, and believe the stress of that time is at least partially responsible. I have immense sympathy for those caring for loved ones for years at a time.

Lots of wise words on this thread from people with experience of caring for their loved ones. ❤️ to everyone coping with this.

Not going into care homes does come with quite a lot of risks you're probably unable to eliminate even if you live close-by

Quite. They're not safe in care homes either, unfortunately. My mum got up in the middle of the night, wandered about silently, went unheard by the night staff and managed to get herself onto the stairs which she fell down. Bumped her head and advanced the dementia to the end - died 3 weeks later. Terrible upset for everyone, care home included, had to go through an I quest, discussion with Social Services etc. She needed to be in a home but it killed her prematurely.

It gave me a bit of a surprise recently when a few of my friends said they've never had to care for their parents like I do. I thought everyone had to do it.

It means I can't work full time and am always running around stressed out.

There were times I wish my father went to sleep and didn't wake up again, and I still feel like that knowing what is coming down the line for him.

I can very much relate to this. Also recognise the frustrated, confused, anxious and aggressive person who lashes out. It's very hard and I do agree that dementia is thought of as people who are a wee bit confused and might wander off sometimes. That's not the half of it.

I helped to care for my father who has dementia for the last few years because my mum was adamant she didn't want him to go into a home. Even with both of us providing full time care, it was physically and mentally exhausting. In the end he deteriorated so much that we just couldn't care for him anymore. It nearly broke us. But still there is so much guilt attached to putting someone in a home.
People who haven't helped care for someone with dementia have no idea how difficult it is. After a while the person you know and love is gone - my lovely, kind, funny, gentle dad was slowly replaced by an angry, frustrated, aggressive man who hated us doing anything for him.
He would fight us over everything, be awake pacing the house at all hours, would stand there pissing in his trousers and then shout at me 'what are you doing to me?' because he didn't realise he was doing it. Not to mention walking shit into the carpet all over the house because he wouldn't stay still long enough to let me clean him. Whoever said it's like having a giant toddler (who is bigger and stronger than me)was right, several times he nearly caused us to fall down the stairs because he thought I was attacking him and tried to push me out of the way. I could go on and on.

Before he was diagnosed I would have imagined dementia as a kindly doddery old person sitting contentedly in a chair and maybe drooling slightly, not able to remember their name.
But that is the very end stages when they can no longer do anything really, the in-between stages (which can last 5-7 years on average) is a horrible time because the person knows something is wrong but is still convinced that they are fine while their world slowly closes in. There were times I wish my father went to sleep and didn't wake up again, and I still feel like that knowing what is coming down the line for him.

If my mother needs care I will do my best, but having been through the last few years I will put in place better boundaries.

None as they both died relatively young.

My parents are in their 80's and still independent but I will do whatever I can to care for them as they have been the best mum and dad.

FIL had dementia. Absolutely adamant he didn't want to go into a care home. DH put some care arrangements in place at FIL's home but I don't think they were enough and was pestering DH to be a bit more on the case. We live four hours drive away and because DH is a man - I believe - didn't feel the pressure for any more involvement in the care than that. SIL lived in the same city as FIL and did very, very little. Mainly tried to block any money being spent on care so she didn't loose any of her inheritance.

In the end FIL with quite advanced dementia decided to do some work in his garden and no-one was there to dissuade him. He had a terrible accident and bled to death on his kitchen floor. Meals on Wheels person tried to administer first aid but it was too late.

Not going into care homes does come with quite a lot of risks you're probably unable to eliminate even if you live close-by. But then again if people make their choices they should be able to do so. It just means you can't compensate for everything as a relative trying to support them.

Obviously I would provide immediate necessary care to anyone I care about (even people I don't know or care about). I'm not a monster!

Providing personal care to family wouldn't promote their dignity (for my parents, other parents might feel differently). My experience of caring for someone with dementia has been it really does fluctuate. They may not know who you are but know you're a family member of some sort, they may be embarrassed one day and not care the next, they may resent you trying to help and thank you the next time. There are plenty of reasons for needing personal care that don't effect cognition too.

Helping to eat isn't personal care. Washing, toileting etc is very different to helping someone to eat, doing some cleaning, picking up shopping, taking someone to appointments etc. I won't be providing personal care except in emergencies but I will do some "care" because I care. I am not going to be a carer.

Also they might actually not care who does it if they have dementia. My experience is the most proud, adamant parents who profess this prior to Illness become like 99% other elderly, dementia patients. They just want a human to help them. Whether it’s lifting them, taking them to the toilet, cleaning up after a toilet accident, spoon feeding them dinner because they can’t hold the cutlery due to tremors. They are seeing the situation through the lens of a well person when they’re saying this. They will honestly not notice or believe that they are a burden they just know they need food, toilet, water, cleaning up.

• DH is an only child and MIL lives 2 hours away. We moved away 25 years ago and she said she would move too… we moved and then she took her house off the market as she changed her mind. Now, we’ve had her house upgraded/adapted so she has downstairs bathroom etc but if she fell or went into hospital then we could not be there for her. She refuses to move to be nearer to us so we can help and she’s tight as old boots so won’t pay for anyone to do anything… we do have POA and if she had to go into a home due to dementia or Ill health then we will place her near us as there is no way I’m driving 120 miles just to see her.

Well, yes I do feel quite a lot of responsibility.

my DPs would never want to be seen as a burden and could afford help. But I was brought up with love and kindness and I feel I want to return that as much as possible.

would I have them move in with us? No way.
would I taxi to appointments and do shopping, help with tasks etc? Yes definitely and already do.

Sorry that reply was to @ ImCrunchyOnTheOutside

I really hope somebody is looking out for you too xx

I help my parents now and although my father has Alzheimer’s they are still relatively independent. At this stage I mostly help by visiting, taking them to do their groceries and have stepped up help in the past during various hospital stays. Also computer issues/ tax filing, hosting all family gatherings. I have several siblings though so it doesn’t all fall on me.

My parents have clear plans about financially supporting themselves and moving into a care home when needed. However I would be open to them living here. My parents were good people who gave me a stable and wonderful life. I have no expectations of inheritance.

We would help my in-laws as they are also good people. However we live in another country so it’s not practical. My husband calls almost every day and is visiting more frequently. They are also financially independent but are against going into care.

I won't be providing personal care at all. My parents wouldn't expect me to.

That’s what I said. No way was I going to leave my mum sitting in her own vomit. I suspect you wouldn’t either.

My DF cared for my DM at the expense of his own health. It led him to have a series of TIAs which has affected his memory. We didn't realise the extent of her behaviour because he didn't really admit. He had fought against any intervention from us until he finally had to admit he couldn't cope. Her loss of mobility and worsening dementia led us all to make the decision to put her into a care home which proved to be mediocre at best. Fortunately she was moved to an excellent nursing home for the final few months of her life.
My DF (89) now muddles through on his own. Gets very stroppy when we try to help, which makes it stressful for us. Fiercely independent but doesn't remember to wash, change his clothes or turn off taps. However he can shuffle to the microwave to reheat a meal. He won't wear a Lifeline bracelet or use the shower seat as he doesn't see himself as elderly or unsteady. He's a real fall risk and I always fear I'm going to find him on the floor when I visit him.
Luckily my siblings and I are all close and can keep an eye. It's the little things like checking medication, eye drops, changing hearing aid batteries and washing up properly. We'll do everything we can do keep him in his own home but if his mobility goes, that's when it becomes impossible.
It's the saddest thing watching your parents in a slow decline.

I'll help with organising care, advocating for them etc (my job makes me better placed to navigate this stuff than my siblings) but I won't be living with them, except in the short term (e.g. an injury or acute illness) and I won't be providing personal care at all. My parents wouldn't expect me to.

That’s good, I hope it works out. My mum had the “placidly bemused” form of dementia, which made it much less stressful for my dad. The thing that was hugely upsetting for him was that there were days when she didn’t know who he was. Bloody heartbreaking.

@venusandmars yes the mental health toll on the spouse is not to be underestimated. Dad is in hospital currently and mum is obviously worried about him and the future - but also feels that a lot of the pressure is off as someone else is making sure he's fed, taking his medication, not wandering off.