He won't face up to what's happening

New to Carers Connect
1

Hi, all. I’ve read quite a few posts on here before posting this and realise most people are struggling with much tougher situations than me. I’m just 60 but more or less gave up work 4 years ago to help look after my (only child) wife’s parents as she has a very successful career. I don’t mean that to sound like she’s ‘hard nosed and uncaring’, she isn’t at all. We just made the decision that it was best for her to carry on working and for me to start the caring.

Mum-in-law died 3 years ago after a very rapid decline into dementia/Alzheimer’s. She remained very fit and active throughout and didn’t need a lot of physical care but mentally it was quite exhausting, although often quite amusing. She had a wonderful turn of phrase and seemed to know when she was being inappropriately funny! She was a week short of her 96th birthday when she died and apart from the last 6 months had had a long happy life.

Father-in-law is just about to turn 97, still lives in his own bungalow, which is 2 mins drive from us or a 15 minute walk. He and MiL were always very self-sufficient and never needed or ever asked for much help from us, so we’ve been very lucky in that regard. He has increasingly severe mobility/balance issues (vascular Parkinsonism), macular degeneration, is about 60% deaf but no other specific problems other than the kind of whole body degeneration that comes with his age. His mental faculties are good.

And this is the problem. He simply does not believe/understand that getting to 97 comes with limitations that are also irreversible. He gets annoyed with healthcare professionals when they tell him they can’t ‘make him better’. He genuinely believes it’s just a matter of time before ‘the right doctor’ will ‘cure’ him. He is clueless about even basic medical issues but nevertheless thinks they are all ‘rubbish’ and don’t know what they’re doing. In the mean time he refuses help and continues to attempt to do things he doesn’t need to or can’t realistically achieve despite me being there to help.

As a result he falls, cuts himself, spills things all over the place and has bouts of continence issues. He is terrified of going into a care home (he can afford it but is adamant he won’t) and is also terrified of dying. He is determined to cook for himself but his kitchen needs a lot (!) of clearing up afterwards. He seems to be terrified of admitting he needs care at all although it’s quite obvious that he does, and that we provide it for him.

I’m very conscious that most people on this forum have the opposite problem i.e. that the person they care for is perhaps too demanding. The situation I’m in is that FiL needs more care than he’s willing to accept, which in turn creates more problems than are necessary. Instead of being resentful we don’t provide enough care (as is probably the case for many carers) he’s resentful that we’re trying to give him too much! As a result he conceals things from us (or tries to), lies about what’s happening and point blank refuses to take reasonable steps to mitigate the potential dangers to himself. He’s become quite belligerent about some things…

Sorry, I’ve rambled on but would be interested in your views. Just so you know he has all the mobility aids you can think of (2 scooters, 3 push-walkers, a wheelchair and grab handles on every surface I can put them on) but still puts himself in stupid situations or tires himself out gardening when he has a gardener! Help!

2

Perhaps try asking him to take charge. I’m confused you say he does not have cognitive issues but then he fails to understand simple things.

3

Bless him. Stoic to the end.

That generation are of the Dunkirk spirit aren’t they?
They also grew up with the generation where doctors are Quacks or later miracle workers and hospital was a one way trip to the mortuary.

It sounds like he is in denial and/or hoping for that panacea, I take my hat off to him and his spirit for life and will to live. He is amazing but I can see your frustrations.

A care home is seen as God’s waiting room, exit in a wooden box, sitting around wondering who is next.

So he is fighting to retain his independence and for survival in denial of his limitations.

Could he be persuaded to have a few meals on wheels a week to keep out of the kitchen?

You are up against a lot here, I don’t have any answers, it might be a matter of waiting for the time that he actually realises, accepts and admits.

Independence
Male pride.
Denial.
Fear.
Stiff upper lip.
Stubborn

S A R A H model (usually used in management of staff during a meeting but this situation would take much longer I guess)
Shock - shock of his age and health
Anger - at the situation and limitations
Rejection - of the facts and help
Acceptance - realisation of his health and limitations
Honesty - admitting he can’t manage

My mother is 90 and has had to accept that she needs my help because she has lost her abilities. She seems to enjoy the help but there are times when she’s adamant she will do something like sort out a cupboard that doesn’t need sorting out and then I have it all to clear up and put back but that is just once in a blue moon so I count my blessings.

It is generally a massive issue at becoming incapable/losing abilities and needing help, frustrating, upsetting, humiliating etc.

4

Some care homes do a day centre where non residents can join in activities for the day and are given lunch and drinks.

I don’t know that you’d have any chance of him agreeing to have one day a week there.
If you could, he would see for himself how good it would be to be there - hopefully.

But find out what activities are on which day first, if you can get him to partake.

My mother tried it once on the recommendation of a social worker.
But the activities were no good for her due to her stroke, she can’t do numbers, they had bingo in the morning and dominoes in the afternoon, both in the dining room, so she was sat on her own in the lounge - which she could have done at home for free instead of paying a day fee and two taxi fares for the privilege!

5

I’ve come across this at work and at home. It’s particularly prevalent among people who have always been the strong one, the provider, Superman, never an ill day until…an inability to accept the change that is inevitable.

Far easier to blame the medics for being unable to cure the incurable than to accept that your world is diminishing. Remember: he saw this happen to his wife, and the chances are that all this is tied up with his grief over losing her. If he’s afraid of death, then accepting it’s inevitability will be impossible - along with all the deterioration associated with age.

Does he have any religious beliefs that involve his being reunited with his wife? If not, then that may explain why he can’t face it.
If he does, then at least you have a way of discussing the future, and his wishes.

And in either case you can tell him that he’s risking bringing that day forward, and suggest ways he can stay independent.

6

Thanks for all the replies!
Asking him to ‘take charge’ is quite funny because he thinks he still is in charge despite all the help he gets. :open_mouth:
His cognitive functions are probably 90% of what they’ve always been. He has trouble with names but then he always has. If he wants something done then he never forgets to ask us every day until it actually gets done, so there’s no problem there.
We’ve suggested the day care thing but although MiL enjoyed it a few times, FiL went once (aged 89) and came back saying he never wanted to go again because - I kid you not - “It’s full of old people”!

My wife (his daughter) says he’s always been stubborn and very self centred. It’s not that he’s unkind so much as thoughtless about other people. One year he gave MiL and her (each) a bottle of dandruff shampoo for Christmas! They both laughed about it but it’s the kind of thing he does.

I get that he’s scared of dying, it’s painful to watch him sometimes as he gets teary but won’t talk about it. He deals with it through denial and ‘optimism’. He was too young to fight in the War (he worked from the age of 14 during the war) and never talks about his experiences. There’s no ‘Dunkirk Spirit’ there. I get a bit fed up with people saying how ‘heroic’ he is for keeping going as it’s easy to say when they’re not the one cleaning poo off his loo every day and scrubbing down the kitchen, or waiting hours for him at the hospital. I am, of course, impressed that he manages so much but it comes at increasing cost to us, particularly in terms of the constant worry. We have stopped our lives so he can carry on his.

And then I start to feel bad for thinking these things. I hate to see him suffer and I totally get why he doesn’t want to go into a care home. We’ve been in enough of them to know that however good they are they’re still a kind of ‘last place to go before death’. He wants to put that off for as long as possible so he pretends everything is ok. Lots of things are still ok but only because we make sure they are. But we’re all fighting a losing battle against time and the inevitable end, and day by day it’s getting worse.

Ah well, I guess we just “keep b*ggering on”, as Churchill said!

7

That’s exactly what my dad would have said about care homes - full of old people!

Your thoughts and feelings are natural and justified.

It is a shame that he in such stubborn denial.

8

I honestly wouldn’t put his brain at 90% from what you describe, especially scrubbing the poo off the toilet!
He sounds reckless, and that would really worry me, and so would his lack of self perception, that like it or not he is very old now and needs help.
Is his GP aware of the situation.
If he lived a long way away it would be easier to ignore, but each one of his wrong decisions is having a direct impact of you and your wife!
Sadly, you are in a state of “sitting on a volcano” because very soon something will happen that ends up being a “life changing moment” for him.
I wish I could suggest something more positive.

9

Thanks again for the replies. It’s all very difficult. With MiL I was her legal Relative Representative (because OH works away a lot) and I learnt a lot about basic rights of the elderly person and their legal capacity to make decisions in their own interest. FiL still has legally recognised mental capacity to make his own decisions. We have Power of Attorney but we can only exercise that with his consent or if he loses that capacity. We can’t force him to stop being stubborn, reckless with his own safety or occasionally downright stupid.

Yesterday he did something stupid and fell over. He didn’t hurt himself but sent a table flying over with plates, glasses, a bottle of wine and a tub of margarine that had basically melted in the summer heat. I spent the next half hour cleaning it all up, dealing with broken glass etc. There was margarine everywhere. I asked if he thought it might be better to keep it in the fridge? He agreed. I went in this morning and there’s the new tub of margarine out on the table again! arrrgghhh! He just doesn’t care or think anything we tell him is important or even true.

Equally, he likes to cook his own ‘full English’ breakfast so I let him most days. This morning he’s sat there eating and I notice his sausage is raw with just a singe of heat on one side. I’ve told him so often that he needs to cook the sausages for a minimum of 10 mins otherwise they won’t be cooked through but he ignores me. I told him again what happens if he eats raw meat (I have to clear it up, as well…). I said, “That sausage is raw!” He said, “I don’t think it is…” and carried on eating it. I’m getting too tired to argue any more. If he thinks something isn’t a problem then he just ignores it whatever the evidence to the contrary.

So like you say, we’re just waiting for the next problem all the time. And when they happen he just laughs and says, “Never mind…” We can’t force him to change. He just carries on regardless, oblivious to the trail of carnage he leaves in his wake.

I wish more older people would read these threads so they could get a glimpse of the impact they have on their carers…

10

A very difficult situation.

I hope it doesn’t take something catastrophic for him to realise, I hope he has realisation before then.

11

I had to laugh at “it’s for old people”. I have two family members who have said that - my Dad, who was in his late 70s at the time, talking about a day service, and my youngest son who was 18 at the time looking at a day service that he’d been offered. He was not impressed at all.

What you’re describing is difficult to unpick. There are elements that make capacity questionable - in that he will not even consider alternatives when they are presented, or the facts of a situation - and yet other things (raw sausages) seem also to be a matter of either choice or a lack of cooking skill (put everything in the pan at the same time and when one’s ready they all are). Either way, the sausage thing is dodgy! The problem with assessing capacity is that it’s not about the quality of the decision so much as the quality of the process of decision making. If your FIL can show that he’s going through the stages of the decision making process, then he has capacity. My only question is: is that actually what’s happening here?

The margarine issue could be stubbornness or a memory issue: if he leaves it in one place, no matter what, he can find it?
He may have forgotten about cooking times for sausages as an example and be covering for that when challenged?

It might he worth looking at everything he does and applying questions to them: would memory issues and an unwillingness to admit to those issues explain this behaviour? If so, it may be worth getting him assessed.

12

Good luck

13

Hi everyone

Not sure what has happened but we appear to have been at least partly hacked as there are unsuitable posts on here blocking up the forum. I’m posting here to bring this topic higher up the forum so that the rubbish can be ignored until the techs get to it.

Sorry about this.

14

Hello,
I read this in detail and just wanted to add my sympathy for your situation.
I too care for a very stubborn in law who everyone says we should be “proud of” because of her age (95) and the fact she still lives in her own home.
Like you, her life goes on at the expense of ours , I think.
We do most things alongside a gardener and cleaner, and at various medical appointments she tells doctors how well she manages !!!
Of course, they don’t bother to include us in any discussions and just take her word for it.
Please don’t feel guilty for feeling angry or as though you should be happier about caring, it drains you, and for me, I wake up with a feeling of dread about what the day will bring.
I too wish there was more honesty about the plight of carers, the cantankerousness of many older people and the impact it has on everyone- obviously I exclude this forum, although I do find myself thinking twice before I post something.
I can’t offer any gems of knowledge as I’m in the same situation, but I can offer emotional solidarity!