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

[myusernamed]

As the title says.

Do your parents talk about when they are old and what they might expect from you in terms of looking after them?

Do you feel a sense of responsibility for looking after them in old age?

There is only me and my sister and she now lives a few hours away. I automatically feel as though I will be responsible for sorting stuff out.

Father often says he will never go into a home - like it's up to me to make sure that doesn't happen.

Does anyone else feel this expectation?

That’s all fine and dandy but doesn’t mitigate the need for residential care. All the things you mention are avoiding the need for help, not care.

There’s not much point in having a freezer full of ready meals if you can’t microwave them or having a walk in shower if you need to be reminded to shower and helped to do so. At the end of the day, if you get dementia it doesn’t matter what future proofing you do, you’ll need 24/7 care.

@TheDogthatDug

No my background is West Indies / Caribbean. I was born and raised in the UK but have family both here and in two other countries (mother and father’s country of origin). It is not so much multigenerational households but more of lots of family living very close by with stronger community ties. So grandma might live for a short time with mum but neighbours, friends, aunts, uncles, nieces, nephews, sisters and brothers will pop in and support. The main difference I see is that there is less time when the elderly need really intense support. They don’t seem to be as Ill for as long before passing so there is less intense care needs. This is purely my observation but I think warm weather, lots of visitors, lots of fresh fruit and good cooking helps.

OP if your father doesn't want to go into a home then he needs to put things in place to help avoid it. Such as living in a flat or low maintenance bungalow. Having a housekeeper or cleaner. Making sure the garden is low maintenance. Having a big freezer for ready meals. Making sure he lives near good public transport (at least for the moment, it's not easy to predict bus routes etc but living near a railway station helps). Having a walk in shower rather than a bath. Living as healthy a lifestyle as possible to avoid avoidable problems.

My PILs had sensibly moved to a single level house, replaced the bath with an accesible shower, had help at home, private physio support, meals-on-wheels etc. Eventually though that is not enough. A care home is now the only place where they can be safe. It will be devastating for the one with dementia - the differing care needs means that even if we can find a home that can take them both, they won't be together.

Yes my parents are similar - their house is all on one level, when they had the bathroom revamped just after Christmas they had a bigger walk-in shower put in, with grab rails and a flip down seat. It's all the rest of it though, agree that there's no point having a freezer full of food or all the tablets sorted into the days of the week if the person can't recognise that they are hungry and need to eat, or doesn't know what day of the week it is.

I found a home that took both mine - one with dementia, the other without @venusandmars. There were some care homes that would have split them up and I rejected those. My parents had adjoining rooms and spent all day together, just as they had at home.

@Blossomtoes that is good to hear. I think we've possibly found one (a nice one) that will take them both when they have spaces. They will sleep in separate areas but can be together during the day. tbh I think the one without dementia needs the space, it is destroying their mental health and mood to see their much loved partner ranting and raving and shitting themselves.

Exactly this - great post

@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.

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.

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.

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 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.

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 really hope somebody is looking out for you too xx

Sorry that reply was to @ ImCrunchyOnTheOutside

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.

• 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.

unfortunately she is reaping what she sows as she is a difficult woman and v selfish. She refuses to discuss things and whatever we say she does the opposite just to be awkward- so really not sure what will happen. whereas my own mum has downsized to a 2 bed bungalow where you can only live if you are over 60. There is a care plan for the estate where they have nurses do the rounds to check on people. She’s also moved to be a 20 minute drive away from my DB and his husband and he provides her with the tech support and general handyman services… we’ve discussed as a family (2 other DB) that the rest of us will help contribute to a carer if one is needed so that burden doesn’t fall onto one person and DM has some finances behind her as well. the difference in the two of them is staggering - my DM has planned it and we all know where we stand, whereas MIL … 😕

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.

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.

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.

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.

None as they both died relatively young.

How sad.

Very good point thought about the risk of not going into a home.

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.

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.