Help with stubborn mindset

[catherinewa]

How does anyone come to terms with the non adapting mindset of their family who didnt even accept they are getting old let alone alzheimers? I know I cant force change on my parents but would like to put a safety net under them. I am struggling to find ways to accept they dont want this and I wonder if they are covering up more than I realise.

5 months on after my dad got his diagnosis (and prob 2 years since I voiced concerns), my parents are still rejecting it.
Im please they are up and doing as always but not making even tiny adjustments

Their unrealistic approach means dad will go shopping in a blizzard when they have 2 chest freezers and a fridge full of food and dad will insist on putting washing to dry in the loft despite having a much safer spare bedroom with clothes horses in...
He thinks this is fighting it and he is perfectly capable and mum is just used to him doing everything for her and prefers to bury her head in the sand. She refuses to even use her inhaler and neither accept when her breathing is bad and that her ankles are v swollen.
They are working on lpas and i have got them some help with the attendance allowance form which they are pleased about.
My dad is the only one who could use a computer and i have managed to get them a much cheaper broadband package which they like too but my dad keeps putting off using the computer to check emsils..he cant google or use websites.

They both get v sensitive if me and my brother make alternative suggestions which they see as intefering... so they muddleon through.

They have always been a good team with v traditional roles but i feel this v unrealistic and unreflective approach could lead to bigger difficulties in the future and then social services will rightly take over (which they will hate)

Unfortunately dad damaged his car and is not allowed to drive anymore. Mum hasnt driven in decades. Im relieved we dont have to have the discussions about safe driving anymore. But even that accident did not encourage reflection about getting old... but it did with the medics which eventually led to the diagnosis. Something I had guessed at several years ago.

 

[Spottydog]

Your story resonates with me a lot. My dad has vascular and mixed dementia since at least 2015 and my mum died in 2019. She had COPD and didn't look after herself as much as she could and relied on my dad but propping him up where he needed it. I do think that if she were still alive they would be managing in some shape or form. I would focus on getting your mum to see if there is any additional medication that could help her. Getting lpas etc in place is a great move. You are doing your best.

 

[Angel55]

💗 Hello and welcome

There are a few things to think about. Ageing, ageing with dementia and ageing with another medical condition as well.

If someone has dementia then part of that is not having any insight into their condition or its potential limitations. My own loved one even though they now live in a residential place still thinks there is nothing wrong with them. You can't reason either.

Both my parents raged against older age and made no fore thought of that but I suspect that is something that happens an awful lot. My in laws are still alive and are pretty much the same.

I was never really successful either in preventing a crisis point.

I think the hardest part is accepting that you cannot prevent a lot of things that happen even if you try and to a certain extent people make their own choices. We tried so many different things but we always met with no but we did keep trying.

That is all you can do keep trying.

 

[Lawson58]

My husband is 84 years old, has chronic heart failure along with some form of dementia. He has had numerous other problems over the years. He understands about all the physical issues but will never acknowledge dementia, that it’s me that has some sort of memory problem.

I am almost 80 years old, in reasonable condition and quite active. But I hate the thought of getting old with a vengeance like you wouldn’t believe. Being a carer, there’s not anything very great about it. As @Angel55 said, she has seen the same in her parents and in-laws so it’s not unusual for your parents to reject the thought of getting old. Just pretend that you’re not getting old and it might not be true.

.When a couple have been together for so many years, they just seem to dovetail together and their interdependancy on each other is remarkable. I also wonder if her denial of her need for her inhaler and the swollen legs is perhaps an indication that she may also have some cognitive failings.

I think you need to be patient for a while. You don’t say how old they are but perhaps you need to consider what is going to happen if one becomes ill for a while and cannot offer the mutual support they rely on.

 

[PammieA]

I am in a very similar situation but also live many miles away from them, plus it's my step dad. I am also a nurse and yes sometimes I have my nursing hat rather than daughter hat.
Over the years I've had a difficult relationship with step dad, as when I've tried to support/advise/help he has said, "she is MY wife and I'll look after her"
He has always been jealous of my mum & my relationship and extremely possessive of her.
That said, he adores her and does look after her.

Although it is very frustrating catherinewa, as it is for you, for my own sanity, and self preservation I have had to accept that I have no control, they need to make there own choices.
I ring them both everyday and offer to drive up and stay for a while to help.
Luckily the mental health team are involved and following a crisis (which I only knew about as Mum rang me scared & upset), a Social Service referral has been done.
Even when asking step dad about this crisis, he minimised it, and said all is OK.

As lots of people on this forum have advised, sometimes you have to wait for the crisis and hope that they will then accept more support.
This forum is a brilliant place to hear other people's experiences, and obtained support and advice.
Thank you everyone for helping me, as I start my journey with my mum and dementia (no diagnosis yet) but my personal & professional head tells me it is dementia.

 

[catherinewa]

Thankyou al. My parents are 80

 

[maisiecat]

Hi @catherinewa I'm afraid one of society's issues is that while we plan for earlier parts of our lives no one really plans for old age. Where we live,how we live,how we manage when we are no longer mobile are not looked at so inevitably we end up in crisis.
Add in dementia and the first thing about dementia is the PWD has no insight into their condition whatsoever. My husband who can walk with help for short distances wants to go to Butlins to go on the helter skelter.
Lots of people on here are having Dementia review with the GP but really they should reintroduce health visitors for the elderly and when people retire they should visit and assess.
I worked hard at all of this because I didn't want my children to be burdened but inevitably my husband's crisis came sooner than expected.
Good luck and you are doing your best which is all anyone can do and remember dementia doesn't recognise itself in the PWD

 

[PammieA]

Has anyone read Wendy Mitchell books, she used to post on here, that's how I became aware of her - she had early onset Alzheimers, diagnosed at 58, symptoms fromm 55 - she can recall all of her early memories of her symptoms. Her book "somebody I used to know" recalls in detail about her thoughts & details of her memories. I would urge everyone caring for someone with dementia to read her books, an insight into the mind of somebody with dementia.
But how does she describe her thoughts & feelings, her memory loss and worries as the dementia develops. Yet our lovely PWD does not accept or is able to talk about their experiences - is it an age difference, "early onset" individuals are able to think, remember more?
I find it fascinating but extremely sad, I wonder what others think.

 

[PammieA]

Hi @catherinewa I'm afraid one of society's issues is that while we plan for earlier parts of our lives no one really plans for old age. Where we live,how we live,how we manage when we are no longer mobile are not looked at so inevitably we end up in crisis.
Add in dementia and the first thing about dementia is the PWD has no insight into their condition whatsoever. My husband who can walk with help for short distances wants to go to Butlins to go on the helter skelter.
Lots of people on here are having Dementia review with the GP but really they should reintroduce health visitors for the elderly and when people retire they should visit and assess.
I worked hard at all of this because I didn't want my children to be burdened but inevitably my husband's crisis came sooner than expected.
Good luck and you are doing your best which is all anyone can do and remember dementia doesn't recognise itself in the PWD

I totally agree about a Health Visitor for the elderly. I have worked as a Health Visitor for the 0-5 year old. But I feel there is definitely a need for a specialist HV to work with the elderly.

Even the 1950's Midwives had a role to support the elderly (call the midwife shows this).
We are supposed to have evolved our NHS for the better, but sometimes I think the 'older years' had better services.

 

[catherinewa]

I am in a very similar situation but also live many miles away from them, plus it's my step dad. I am also a nurse and yes sometimes I have my nursing hat rather than daughter hat.
Over the years I've had a difficult relationship with step dad, as when I've tried to support/advise/help he has said, "she is MY wife and I'll look after her"
He has always been jealous of my mum & my relationship and extremely possessive of her.
That said, he adores her and does look after her.

Although it is very frustrating catherinewa, as it is for you, for my own sanity, and self preservation I have had to accept that I have no control, they need to make there own choices.
I ring them both everyday and offer to drive up and stay for a while to help.
Luckily the mental health team are involved and following a crisis (which I only knew about as Mum rang me scared & upset), a Social Service referral has been done.
Even when asking step dad about this crisis, he minimised it, and said all is OK.

As lots of people on this forum have advised, sometimes you have to wait for the crisis and hope that they will then accept more support.
This forum is a brilliant place to hear other people's experiences, and obtained support and advice.
Thank you everyone for helping me, as I start my journey with my mum and dementia (no diagnosis yet) but my personal & professional head tells me it is dementia.

Thank you. I too live a long way away but my brother lives near my parents and helps with the minicrises. They are 80 and retired teachers and think they know best but their decision making is mads on hearsay or what they are used to.. rather than facts and they dont consider that their bodies are not the same as they used to be...

 

[Angel55]

Has anyone read Wendy Mitchell books, she used to post on here, that's how I became aware of her - she had early onset Alzheimers, diagnosed at 58, symptoms fromm 55 - she can recall all of her early memories of her symptoms. Her book "somebody I used to know" recalls in detail about her thoughts & details of her memories. I would urge everyone caring for someone with dementia to read her books, an insight into the mind of somebody with dementia.
But how does she describe her thoughts & feelings, her memory loss and worries as the dementia develops. Yet our lovely PWD does not accept or is able to talk about their experiences - is it an age difference, "early onset" individuals are able to think, remember more?
I find it fascinating but extremely sad, I wonder what others think.

Hello 💗

I did read that book and thought how insightful and self aware she was but like you say she was considerable younger .

My Dad was nearly 75 when things became more obvious however he was always in denial about his age and older age as was my mum when she was alive. She passed away from cancer in her early sixties but neither of them planned or prepared or thought about older age whereas I am acutely aware of older age and its challenges.

My in laws are much the same but whilst they accept older age they are living in a totally unsuitable house for mobility and in a place where there are few services so I can see problems over the hill approaching our way again. I do not want my own children to feel as I have felt so I hope I will have the opportunity to make my own choices if I am fortunate enough to have the mindset to do so.

 

[Anna321]

How does anyone come to terms with the non adapting mindset of their family who didnt even accept they are getting old let alone alzheimers? I know I cant force change on my parents but would like to put a safety net under them. I am struggling to find ways to accept they dont want this and I wonder if they are covering up more than I realise.

5 months on after my dad got his diagnosis (and prob 2 years since I voiced concerns), my parents are still rejecting it.
Im please they are up and doing as always but not making even tiny adjustments

Their unrealistic approach means dad will go shopping in a blizzard when they have 2 chest freezers and a fridge full of food and dad will insist on putting washing to dry in the loft despite having a much safer spare bedroom with clothes horses in...
He thinks this is fighting it and he is perfectly capable and mum is just used to him doing everything for her and prefers to bury her head in the sand. She refuses to even use her inhaler and neither accept when her breathing is bad and that her ankles are v swollen.
They are working on lpas and i have got them some help with the attendance allowance form which they are pleased about.
My dad is the only one who could use a computer and i have managed to get them a much cheaper broadband package which they like too but my dad keeps putting off using the computer to check emsils..he cant google or use websites.

They both get v sensitive if me and my brother make alternative suggestions which they see as intefering... so they muddleon through.

They have always been a good team with v traditional roles but i feel this v unrealistic and unreflective approach could lead to bigger difficulties in the future and then social services will rightly take over (which they will hate)

Unfortunately dad damaged his car and is not allowed to drive anymore. Mum hasnt driven in decades. Im relieved we dont have to have the discussions about safe driving anymore. But even that accident did not encourage reflection about getting old... but it did with the medics which eventually led to the diagnosis. Something I had guessed at several years ago.

Hi what is an Ipas please?

 

[Grannie G]

Hi what is an Ipas please?

An LPA is a Lasting Power of Attorney which allows a family member or someone close to be able to make health and financial decisions for a person with dementia who has lost the capacity to make decisions for themselves.

It is a trusting legality which ensures whoever has a LPA acts in the best interests of that person

 

[Anna321]

thank you