How realistic is it for my mum to cope with my dad like he is?

[SlothfulSusan]

I'm looking for some perspective.
I live 250 miles away from my parents who are almost 92 and 91.The only help they have is my sibling who lives close by.

My dad has vascular dementia and other chronic illnesses. His dementia is 'moderate'. My mum is 100% certain she wants to look after him at home for as long as possible. But it's very hard for her.
I'd like to know if anyone else has a parent being the main carer and how you decided if the ill parent needs a care home.

None of us want dad to go into a care home. He is fairly docile and dozes off during the day a lot. The biggest issues are his incontinence - he can't always control his bowels and has an accident roughly once a week or fortnight, which mum has to clean up. Even with incontinence pants, they don't always contain everything. Mum finds this very tiring having to shower him - he can stand but is frail.

He also gets up at night and makes his breakfast sometimes at 2am, sometimes 4am, not every night. This wakes mum up. Sometimes he gets up during the night and starts tidying his room or making a noise which wakes her (they sleep in separate rooms.)

Consequently she has days when she is exhausted.

I must stress she is not your average 91 yr old. She digs the garden, reads avidly, makes all their meals from scratch and is active socially when she dares leave dad for an hour or so.

She won't even discuss a care home- partly because they have very few savings and she doesn't want to use it - but also because she feels it is her duty to care for him- a bit like a martyr.

I am really worried about her and wonder how long - if he lives much longer- she can keep going. Her GP is also concerned but mum wants to battle on.

Would they consider having carers at home. Has he been referred to his local continence nurse which the GP can arrange. They can ask social services to come and assess his needs at home, the GP could ask for an occupational therapist to visit the house to see if there is any equipment that would make life a bit easier for them like shower stool. The district nurse team may offer a bathing service. Are they claiming attendance and carers allowance which could help them.

My dad didn't have your poor dad's problems but he suddenly became very frail. My parents are a similar age and my mum was a lot like yours.

What happened is she had a fall and broke her shoulder and he suddenly became frail. We found they were both entitled to benefits as a result - they used the money for a cleaner and a gardener (my dad was the gardener, not my mum.) That made things a lot easier. My FIL, on the other hand, used to pay for carers to come in a couple of times a day to help him with getting showered and dressed in the morning and to help put him to bed in the evening. They also did shopping for him. Both my parents and my ILs stayed living independently as a result.

The thing is that many from that generation just hate asking for help. We got round it with the cleaner and gardener by saying it was keeping people in work - that was much more acceptable to them.

My mother in law has vascular dementia, she is 82 and my film is 84. He is fit and active and was not at all keen for her to go into a home but he was exhausted.

She was up and down the stairs all night, could not rest and therefore neither could he. He couldn,t just leave her downstairs alone and was just not getting enough rest.

Although he was capable of looking after her the exhaustion was really breaking him and she had to leave home in the end.

We did try respite care but it just wasn't enough.

The lack of sleep for your mum and having to shower him sounds very tiring and could lead to accidents.

Just on a practical note - you can get special shower chairs. Might one of them be suitable?

Have they had a social services assessment? There may be things they can do to help, and provide aids to reduce wandering at night (there are movement sensors which will say 'go back to bed' for instance)
My parents (mum has dementia, dad is very frail himself) live at home still, but have carers everyday, mum is taken out twice a week to give dad some respite and they have a cleaner, gardener and handyman.

Dad didn't want carers, but once he accepted them it is def what keeps mum at home, and he is less tired. They are self funding, which means they have the same carers all the time and that has been invaluable as they are flexible and keep an eye on everything.

Would they consider having carers at home. Has he been referred to his local continence nurse which the GP can arrange.

They don't want / need carers at home. Mum manages all the housework and cooking. His incontinence is because of his dementia- he can't get to the loo on time.

They can ask social services to come and assess his needs at home, the GP could ask for an occupational therapist to visit the house to see if there is any equipment that would make life a bit easier for them like shower stool. The district nurse team may offer a bathing service.

He has been assessed twice recently by OTs. He's got 2 walking sticks and a commode which he won't use. He can't manage a frame of any kind.

Are they claiming attendance and carers allowance which could help them

They get AO- I set that up. They can't get carers allowance as my mum has her own state pension which is more than the carers allowance- you get one or the other.

He dresses himself but he refuses to shower. He only showers if he soils himself. Mum helps him have an all over wash. He has refused a shower chair.

Mum is adamant she doesn't want a cleaner or anyone coming in. They use the AO for a gardener, having the heating on all day and night (he feels the cold) and taxis for mum if she needs to go out.

I do her online food shopping every other week but she goes out on a shopper bus- which is a social event for her- when she can. I do a lot of online shopping for her for clothes etc. Most people think she is late 70s or early 80s- she's always looked 10 yrs younger. But last week when he pooed his pants again she did say she didn't know how much longer she could go on. There are plans in the pipeline to take him to a day centre once a week or so, and she's been reluctant to let him go- in case he falls etc. She's very controlling.

They have an alarm and have been told that their local SS /carers will come if she uses it, to help shower him after a toileting accident.

I just feel it's amazing she does all she does at almost 91 .

Hi, sorry to hear about your dad.
Your mum may be able to claim attendance allowance, which could help to get some help in.
If you speak to his gp it might be possible for him to have some care via nhs.
This would help your mum with showering.
Lots of forms to fill in which to be honest are daunting but if your mum really wants to keep him at home then worth it.
Good luck.

It is amazing, but she needs to consider what will happen to him if something happens to her. And if he goes to a day centre once a month he won't remember going so it'll be fresh each time, whereas if he went three times a week he'd be more familiar with it.

She really needs to loosen control (easier said than done) because she's assuming she'll outlive him - he needs to be used to being with others.

I give met some wonderful spouses over the years, it's amazing what people do in difficult situations, my mum looked after my dad at home and never wanted or asked for any help.

Thanks for all the replies. Good to have some support.

To give a bit more info:
Dad can dress himself and make a boiled egg. Sometimes that's at 2am though. he doesn't need a carer in the morning to help; social services have suggested this (although my parents would have to pay for it) but mum is adamant it's not necessary.

Dad doesn't want to go out to the day centre; he feels no need. he says he's always been a loner- which is true. it's going to be a trial run to see how he reacts. His speech is quite badly affected - slow- so whether he will settle there is another matter. There is no way he'd go 3 x a week- the cost is £41 a day and they can't stretch to that.

They live in a small bungalow and it's clean and tidy- more than mine! I think the strain on mum is lack of sleep and always having to be aware of what he is doing- like looking after a toddler- because he can barely walk now and she is terrified he has a fall.

He is also very deaf even with hearing aids, so it's exhausting for her to make him hear and understand.

He's quite clumsy- knocks drinks over- and she gets very exasperated by it all.

I think she feels conflicted; on the one hand she is adamant she will not give up on him, but at the same time it's like living with a stranger- no conversation. Thankfully she has masses of friends mainly younger than her, so she's not isolated.