Dad not accepting /understanding how to help my mum

[HelenFR]

Please help. I'm at the end of my tether. Mum has alzheimer's (not officially diagnosed yet but very likely). My dad just does not get it! The way he responds to the things my mum does generally makes things worse, and themore advice we get, as much as I try to help he just doesn't get it.
I'm a single mum to an almost three year old, mum is 72, dad is 80 and really struggling! Does anyone have any advice? I'm so fed up!

 

[Violet Jane]

It might be easier once your mother has been formally diagnosed with dementia. Is she due to have an appointment at the Memory Clinic soon? Once she has been diagnosed your father is more likely to accept that things will have to change and that includes how he deals with your mother.

Your priority is to your young child who needs you more than your parents do. You may have to let your parents muddle along if they will not accept advice or help. You can advise your father about how he relates to your mother but you can’t make him change. I would put some firm boundaries in place (eg not taking multiple phone calls a day, not going round whenever you are asked, not intervening when there is a blowup because your father has said or done something which upsets your mother) otherwise you will be overwhelmed. Decide what support you can realistically give to your parents and don’t go beyond that. That might sound cold but you need to protect your own health so that you can look after your child who depends on you.

Push for a formal diagnosis and get the rest of your family involved if there is any other family. Your child has to come first. SS can step in if the situation becomes really unsatisfactory.

 

[HelenFR]

It might be easier once your mother has been formally diagnosed with dementia. Is she due to have an appointment at the Memory Clinic soon? Once she has been diagnosed your father is more likely to accept that things will have to change and that includes how he deals with your mother.

Your priority is to your young child who needs you more than your parents do. You may have to let your parents muddle along if they will not accept advice or help. You can advise your father about how he relates to your mother but you can’t make him change. I would put some firm boundaries in place (eg not taking multiple phone calls a day, not going round whenever you are asked, not intervening when there is a blowup because your father has said or done something which upsets your mother) otherwise you will be overwhelmed. Decide what support you can realistically give to your parents and don’t go beyond that. That might sound cold but you need to protect your own health so that you can look after your child who depends on you.

Push for a formal diagnosis and get the rest of your family involved if there is any other family. Your child has to come first. SS can step in if the situation becomes really unsatisfactory.

Thank you. It's just so hard when I know how miserable my mum is ?

 

[Cat27]

Welcome to TP @HelenFR
It’s incredibly difficult to stand by & watch our parents struggle.
Please keep posting as you’ll get lots of support here.

 

[canary]

Your dad is probably in denial, because he doesnt want to contemplate something like this happening to his wife. Hopefully he will come round once she has a diagnosis.



Mind you, when I hear of stories like this a bit of me wonders whether the spouse is beginning to develop dementia too...............

 

[HelenFR]

Your dad is probably in denial, because he doesnt want to contemplate something like this happening to his wife. Hopefully he will come round once she has a diagnosis.



Mind you, when I hear of stories like this a bit of me wonders whether the spouse is beginning to develop dementia too...............

There is definitely denial! And I have actually wondered that at times too!

 

[Shedrech]

Hello @HelenFR
A warm welcome from me too

It's tough on everyone trying to come to terms with a likely diagnosis

The suggestions on this thread may give you, and hopefully your dad, some ideas ... nothing is guaranteed to work but something may be useful

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Linbrusco]

@HelenFR
My Mum was diagnosed with Alzheimers in 2013 at age 72, in hindsight from age 70.
Dad at the time was 75.
He never ever accepted Mums diagnosis. Never understood her limitations, nor why she did or said things.
A year later Dad was diagnosed with Mild Cognitive impairment.
To a degree denial was part of it, but really it was down to his MCI and after 50odd yrs of marriage he expected Mum and their life to be no different.
My only regret is that I didnt get them used to outside help right in the early days.
I struggled too much on my own trying to put things right , helping Mum, and often playing referee.
By the time I really needed help with mums showering & dressing, Dad was of no use but also when carers did come, Dad would send them away.
No amount of explaining why carers had to help would suffice, even pointing out Mums unwashed hair, clothes mismatching or back to front.
Mum went into care 2016.
Dad could physically see her decline but yet still asked when she’d be better and come home.
A year later Dad was diagnosed with Mixed Dementia.

In my experience once your Mum is diagnosed it might help your Dad to understand the situation , but dont be surprised if it doesnt.
Make sure the diagnosis is not from you or by letter but maybe a sit down appointment with the specialist. ( Covid permitting in your country)
Get as much help as you can early on.
Best wishes x

 

[Locl]

@Linbrusco
Reading your story has helped me to realise that I am not the only one in this situation. Thank you so much.
My mum has moderate/severe dementia and is refusing to wash or even change her clothes (which she wears day in day out and also sleeps in). Often sleeps in coat too. Wears coat at home with gloves on even when summer. Heating on in the house too! All blood tests normal so no reason there for this other than the dementia.

My dad has always been an 'ostrich' about anything he can't cope with and although he says he knows mum has dementia he treats and speaks to her as though she hasn't. He is not a patient man and so I think mum is now fighting back for all the years he bullied her. All in all a nightmare.

The memory nurse also thinks my dad has mild dementia but he refuses to get tested as he doesn't think he has a problem and thinks he will be stopped from driving. Even though we have explained that this is not an automatic outcome. To be honest his driving does worry me....

Both have refused care until just before Xmas. Mum is urinary incontinent, won't wear pads (or even underwear) and she and the house smell terrible. It breaks my heart to see them like this as my mum was so house proud and was always smart and clean.

I get frustrated and cross with my dad that he has just given up trying to help her. I am hoping that when the carers start coming in that things will improve. All in all affecting my mental health too.

 

[Cat27]

Welcome to TP @Locl
You are far from the only one in this situation.
Please keep posting as you’ll get lots of support here.

 

[Linbrusco]

@Linbrusco
Reading your story has helped me to realise that I am not the only one in this situation. Thank you so much.
My mum has moderate/severe dementia and is refusing to wash or even change her clothes (which she wears day in day out and also sleeps in). Often sleeps in coat too. Wears coat at home with gloves on even when summer. Heating on in the house too! All blood tests normal so no reason there for this other than the dementia.

My dad has always been an 'ostrich' about anything he can't cope with and although he says he knows mum has dementia he treats and speaks to her as though she hasn't. He is not a patient man and so I think mum is now fighting back for all the years he bullied her. All in all a nightmare.

The memory nurse also thinks my dad has mild dementia but he refuses to get tested as he doesn't think he has a problem and thinks he will be stopped from driving. Even though we have explained that this is not an automatic outcome. To be honest his driving does worry me....

Both have refused care until just before Xmas. Mum is urinary incontinent, won't wear pads (or even underwear) and she and the house smell terrible. It breaks my heart to see them like this as my mum was so house proud and was always smart and clean.

I get frustrated and cross with my dad that he has just given up trying to help her. I am hoping that when the carers start coming in that things will improve. All in all affecting my mental health too.

Im sorry to read of your situation.
My Dad was a bully to Mum for most of their married life
By the time she went into care Dad was a complete stranger to her but recognised everyone else.
She would often be looking for the man in her wedding photo and ask when David was coming to visit.
Dad of course would be “ What are you on about, Im here, Im David”
Mum would say “ Yes but wheres David”
Tragic but funny.

 

[Emiliag]

This is something I am also finding difficult my nana has vascular dementia and Alzheimer’s and I often find my grandad loses patience with her easily. Pointing out when she is doing something that is very obviously due to the condition ie. Asking for people that are no longer with us or repeating questions and hiding things. I have tried to explain in many ways and with different types of information about the condition but nothing seems to help. Her frustrations are often directed at him and I can understand why he is finding it difficult to re assure her or answer calmly. I’m also at a loss when trying to keep them both from becoming upset or frustrated.

 

[MartinWL]

The memory nurse also thinks my dad has mild dementia but he refuses to get tested as he doesn't think he has a problem and thinks he will be stopped from driving. Even though we have explained that this is not an automatic outcome. To be honest his driving does worry me....

If your dad's driving is a worry then you really should start the process of getting him stopped from driving. To avoid a bust-up you can report anonymously to DVLC and deny all knowledge, or even get a trusted friend to do the dirty so you can truthfully deny it was you. They will send a questionnaire and ask his GP for a report. This is a very tough one as there is a very poor system in place in the UK for identification of and stopping dangerous drivers. It takes months.

This is a very common issue that causes much strife and anger but nobody wants to be told one day that their elderly parent has killed himself and three innocent children whilst driving.

 

[Shedrech]

hi @Emiliag
I wonder whether it might help your grandad by realising that his wife has, sadly, possibly at times slipped back to an earlier time in her life, so for her those family members long gone are in her present and of course she asks about them ... sometimes answering with a neutral phrase such as 'they're much the same' or 'we might visit when they're not so busy' helps ...though, you may have already tried this and it's not easy to stay patient all the time

something here may help

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Ressie]

My grandma had Parkinson’s with Lewy-Bodies, so not quite the same thing, but exhibited similar issues as PWD. She was 76 when she got the diagnosis and died last year aged 81. Grandad is 2 years older than her.

Even though granddad accepted that something was wrong even before the formal diagnosis (my grandma’s sister had been diagnosed with the same a few years earlier…) dealing with it was another matter.

In the early stages a lot of his behaviours were a result of the belief that if she would only try harder and put in more effort, then she could do more and counteract some of the symptoms (the freezing, for example). He felt like he was putting more effort in than she was to try and address the issues and this did lead to him losing his patience.

Later on it was sheer tiredness any the stress of being her main carer which expressed itself in impatience and his constant desire to correct her incorrect memories or tell her her hallucinations were silly or wrong. No matter how much we spoke to him about going along with things, distracting etc. the tiredness, stress, lack of patience and his very logical thinking brain meant ‘playing along’ was a challenge for him until the point where she could no longer articulate her memories or hallucinations and the problem ‘solved itself’ so to speak. He adapted many things and was a wonderful husband and carer, but this was just one of the things he couldn’t seem to manage.

I tried to be as compassionate with him as i was with my grandma, I tried to be her advocate explaining that it wasn’t that she didn’t want it was that she couldn’t (when it came to physical things), and that correcting her ultimately just increased the frustration for both of them.

I guess for a partner, or indeed any loved one, it’s very difficult to ever accept what is happening and sometimes we need to take a step back and give them the time and hope that somewhen our ’advice’ will sink in? I don’t know how strong your communication with your dad is, but if it’s good, could you perhaps try asking him some leading questions to find out the root of his behaviour. It’s most likely fears, but which specific fears. Maybe finding the root will also help you both find a way to address them without him getting frustrated or seeing it as criticism of what he’s doing?

 

[Sunshine11!]

Mum has been Dad's rock for all his life. Now that she has been diagnosed with emerging Alzheimers he is really struggling. he seems to have some very strange priorities. My sister lives at home with them but has issues herself, which she has/is doing nothing to get any help for. Ive contacted social services, age UK, the Drs, but have been told at every step that they "can't get involved without the permission of my family".
I'm finding it so hard to not have a permanent guilt complex, about being there every hour, of every day, but have a life of my own and know that if I do too much, it will impact on me.
How do other people cope with this please?

 

[canary]

Hi @Sunshine11! it is very hard to step back, but the trouble is that if you are always there sorting out all the problems for them they will rely on you more and more until you collapse. Carers breakdown is a real thing. Ditch the guilt, sit down and decide what you can and, more importantly, what you cannot do - and stick to it. If they moan that you arent doing things, suggest that they get outside help in.

Im afraid that sometimes you have to develop a thick skin, but being there for them all the time isnt good for either you, or them

 

[Bex123]

Sor

Please help. I'm at the end of my tether. Mum has alzheimer's (not officially diagnosed yet but very likely). My dad just does not get it! The way he responds to the things my mum does generally makes things worse, and themore advice we get, as much as I try to help he just doesn't get it.
I'm a single mum to an almost three year old, mum is 72, dad is 80 and really struggling! Does anyone have any advice? I'm so fed u

Sorry to hear you’re facing this horrible disease too. My mum is in the early stages too and my dad has had a similar reaction. Especially, in the very early days he would snap at her and get frustrated. It’s so upsetting to watch as a daughter. I tried to speak to dad alone when I was in a good ish state of mind and try and make him understand that it was the condition doing it to mum and encouraged him to speak to people about it and not bottle his feelings. It’s still baby steps but he has since told his sisters about what’s going on and a couple of friends and things have improved slightly.