Mum keeps rejecting any help

[Nickinotnikki]

Hello all, my 83yo mum with recently diagnosed vascular dementia keeps rejecting any outside help. She sacked the AgeUK home help after 5 visits, she liked - then said she didn’t like - Wiltshire Farm Foods. She’s now onto her second set of carers (1/2 hour every weekday lunchtime) and is saying she doesn’t want/need them, and never agreed to them in the first place. And now also says she doesn’t have dementia, having been to a day centre last week where she was “by far the cleverest”.

So ... what do I do? I know she needs a bit of help (with cleaning, and prompts for tablets and sometimes to eat and drink).

Is this new denial just another step?

She is very independent and proud. Do I just leave her until a crisis necessitates intervention?

It is very hard to just leave her struggling even though she doesn’t see it and “just wants to be left alone”. I live 100 miles away and there are no close/able relatives so we rely on the kindness of neighbours.

Thanks for any kind words of advice.

 

[canary]

Your mum has reached the stage where she no longer remembers nor understands that she has dementia. It is not denial as she has no control over it - its a symptom called anosognosia. Once this develops, Im afraid that it doesnt go away, so it wont be a passing phase. I remember my mum insisting that she was perfectly well, didnt have anything wrong with her and that she kept herself fit by running up and down the stairs - despite the fact that she could barely shuffle a few feet with her zimmer frame.

Unfortunately there is not a lot that you can do as you live so far away. I would write a letter to her GP so that s/he knows what is going on and keep reinstating the carers etc while you wait for that crisis.

 

[Nickinotnikki]

Thank-you. I think I am suffering a bit of denial myself ... ;-)

Your mum has reached the stage where she no longer remembers nor understands that she has dementia. It is not denial as she has no control over it - its a symptom called anosognosia. Once this develops, Im afraid that it doesnt go away, so it wont be a passing phase. I remember my mum insisting that she was perfectly well, didnt have anything wrong with her and that she kept herself fit by running up and down the stairs - despite the fact that she could barely shuffle a few feet with her zimmer frame.

Unfortunately there is not a lot that you can do as you live so far away. I would write a letter to her GP so that s/he knows what is going on and keep reinstating the carers etc while you wait for that crisis.

 

[Soroptimist]

Hi @Nickinotnikki

My mum had this, exactly. She didn't think there was anything wrong with her. She told the live in carer to leave (after less than 48 hours) and similarly told the social services people to stop coming round. When we saw an article in the newspaper about Alzheimer's she said "oh yes, that must be an awful thing to have". It would have been funny if it wasn't so desperate.

The key is that from her point of view the carers were either telling her what to do or trying to care for her, which in her mind (as there's nothing wrong with her) was totally unacceptable to her.

The care model that worked for us was an agency whose carers presented themselves as her friend. They had no name badges or uniforms, they ate with her (rather than SS visits where they heat something up and put it in front of her) and they did the things with her that she wanted to do - like visit places and go to charity shops. It worked really well - as it meant she felt like things were normal. I think when someone with dementia is like this you have to enter their world and design things around them.

I hope that helps. I think it's against forum rules to post names of agencies? But if you can PM me I can let you know - it's a national franchise.

 

[Donkeyshere]

Ahh the old "I can look after myself" , "you don't do anything for me" prose and "of course I dont need meals on wheels when you are away, how ridiculous I can cook for myself" - (she does not even have an oven!) We went through a similar stage with our MIL even up until a month or so ago and she lives with us!

I agree contacting her doctor and telling them what is happening as they may not be aware - PWD are very good at seeming to be quite able when in reality its far from the truth. I asked the social worker a question today about a personal issue with the MIL which I felt still needed a level of respect and found hard to mention to her but sometimes you have to quite inventive and devious to get around issues! I also think getting in touch with the carers would be a good idea to explain exactly what is happening.

If you look at it from your mums view, she is probably scared and does not want to admit what is happening to her and had been very independent up to a point - at least that is what we found hence the denial in accepting help.

The more information you can tell those looking after her the better - even though I have found the proud and independence side of things has to be put aside with dementia as the PWD is still vulnerable and will need help despite what she says. Its hard as the dynamics that were once there change completely.

However, this is just my experience and everyone's on here is different, but keep posting I have found these forums very valuable even when I have put a load of codswallop and vented!

 

[Rosettastone57]

Hello all, my 83yo mum with recently diagnosed vascular dementia keeps rejecting any outside help. She sacked the AgeUK home help after 5 visits, she liked - then said she didn’t like - Wiltshire Farm Foods. She’s now onto her second set of carers (1/2 hour every weekday lunchtime) and is saying she doesn’t want/need them, and never agreed to them in the first place. And now also says she doesn’t have dementia, having been to a day centre last week where she was “by far the cleverest”.

So ... what do I do? I know she needs a bit of help (with cleaning, and prompts for tablets and sometimes to eat and drink).

Is this new denial just another step?

She is very independent and proud. Do I just leave her until a crisis necessitates intervention?

It is very hard to just leave her struggling even though she doesn’t see it and “just wants to be left alone”. I live 100 miles away and there are no close/able relatives so we rely on the kindness of neighbours.

Thanks for any kind words of advice.

My mother-in-law was like this. She was self funding and she was in her own home . She had carers in three times a day for three years . Every week she would say she didn't need the help but in reality she could do little for herself. My husband told her he was in charge now and carers were not negotiable. The agency were told they were to still keep coming, any proposed variation of calls came through me. She refused to go to day centres after she went a couple of times and someone "sleighted " her in some way. Eventually she went into hospital last summer and we arranged for her to go into care . By then, the situation had deteriorated so much, there was no choice

 

[Nickinotnikki]

Hi thanks @Soroptimist .. don’t know how to send a private message ... I think I maybe have to post 10 times before that is available?

Hi @Nickinotnikki

My mum had this, exactly. She didn't think there was anything wrong with her. She told the live in carer to leave (after less than 48 hours) and similarly told the social services people to stop coming round. When we saw an article in the newspaper about Alzheimer's she said "oh yes, that must be an awful thing to have". It would have been funny if it wasn't so desperate.

The key is that from her point of view the carers were either telling her what to do or trying to care for her, which in her mind (as there's nothing wrong with her) was totally unacceptable to her.

The care model that worked for us was an agency whose carers presented themselves as her friend. They had no name badges or uniforms, they ate with her (rather than SS visits where they heat something up and put it in front of her) and they did the things with her that she wanted to do - like visit places and go to charity shops. It worked really well - as it meant she felt like things were normal. I think when someone with dementia is like this you have to enter their world and design things around them.

I hope that helps. I think it's against forum rules to post names of agencies? But if you can PM me I can let you know - it's a national franchise.

 

[Clarem66]

Nicki, thank you so much for your post and everyone's responses. I thought I was alone in struggling with Mum who now is having real difficulties caring for herself but is adamant that she doesn't need help and, exactly the quote "I keep fit by running up and down the stairs", which just wouldn't be possible. I've been talking to a counsellor who said that I should join a group or forum and she was absolutely right. You've helped me enormously already.

 

[Nickinotnikki]

Nicki, thank you so much for your post and everyone's responses. I thought I was alone in struggling with Mum who now is having real difficulties caring for herself but is adamant that she doesn't need help and, exactly the quote "I keep fit by running up and down the stairs", which just wouldn't be possible. I've been talking to a counsellor who said that I should join a group or forum and she was absolutely right. You've helped me enormously already.

This site is probably going to save my sanity too - I've read up about dementia, signed onto a dementia MOOC, booked myself on carers courses, done all the financial stuff etc … but what I REALLY need is just to talk to people going through it (or who came out the other end) and one day I hope I'll be able to pay it back. In the absence of a physical group that I can attend locally (having a moan down the pub and to just be able to acknowledge that its ****) TP is truly amazing.

 

[Shedrech]

just to say Welcome @Clarem66 ... you've certainly found the best place for support and to share experiences .. now you're part of this sympathetic community you are definitely no longer alone ... so post with whatever is on your mind and folk will respond

 

[DesperateofDevon]

Hi folks, my mum is the ultimate in awkward! I can honestly say that stepping back & letting the crisis happen is heart breaking. GP is the first point of call, if your Mums GP is supportive then half the battle is won!
Mum cancelled carers then got another UTI so is now pretty much immobile & extremely reliant now on the carers she never wanted 4 times a day!
It sucks & it’s not what I’d want for my loved one but it is what it is.
I’m now trying to claw back some sort of life for myself- having learnt the hard way that self preservation is vitally important when you have a PWD ( or two!) in your life.

 

[TNJJ]

Hi folks, my mum is the ultimate in awkward! I can honestly say that stepping back & letting the crisis happen is heart breaking. GP is the first point of call, if your Mums GP is supportive then half the battle is won!
Mum cancelled carers then got another UTI so is now pretty much immobile & extremely reliant now on the carers she never wanted 4 times a day!
It sucks & it’s not what I’d want for my loved one but it is what it is.
I’m now trying to claw back some sort of life for myself- having learnt the hard way that self preservation is vitally important when you have a PWD ( or two!) in your life.

Sorry to read this.

 

[Nickinotnikki]

@DesperateofDevon my mum’s GP is not interested ... “it’s not like 70s where your local doctor visited you, you know” she told me. If she has a medical need, they’ll see her, but otherwise “you’re on your own”. It most definitely sucks!! I hope you are getting back a semblance of normal life...

Hi folks, my mum is the ultimate in awkward! I can honestly say that stepping back & letting the crisis happen is heart breaking. GP is the first point of call, if your Mums GP is supportive then half the battle is won!
Mum cancelled carers then got another UTI so is now pretty much immobile & extremely reliant now on the carers she never wanted 4 times a day!
It sucks & it’s not what I’d want for my loved one but it is what it is.
I’m now trying to claw back some sort of life for myself- having learnt the hard way that self preservation is vitally important when you have a PWD ( or two!) in your life.

 

[DesperateofDevon]

Normality.... what’s normal for each person on this forum would horrify those who don’t have a PWD in their life.
That’s the problem isn’t it .... people don’t really understand until they experience it themselves.
Sadly for us all there is only one natural conclusion to this, a finality that leaves us wondering if we could have done more, & wrecked emotionally by the whole experience.
It’s cruel beyond belief for our loved ones to be robbed slowly of their mental capacity.
I count myself lucky in the fact that Dad is in a CH & Mum now has carers in 4 times a day.
I’m one of the lucky ones!!
Made me realise how fortunate I am getting care sorted when reading other people’s struggles on this forum. But it was a hard won process that leaves you emotionally drained & mentally exhausted.

Recently I contacted the CQC to speak about my concerns that Mums GP really wasn’t interested- as that GP is the practice manager & only works 2 days a week I had exhausted all other possibilities
of communication. Especially since Mums TEC / DNR details needed the GP to fill in all relevant information & sign- this hadn’t been passed on or marked bold onto her file details. Infact it still hasn’t as far as I know!
CQC want me to report to the parliamentary commission! Why can’t they just send all the information across I gave them?? Why does everything have to be down to those who care for the PWD???
Surely someone must realise somewhere that carers need help & support & even though you explain you just don’t have the energy or fight left in you to go through all this again - still the responsibility to report is left to you!
No wonder nothing changes!

Oh I’m not bitter ( much) or angry ( just a tad as it uses too much energy!) but frustrated & hurt that PWD & the families are left to try & sort our way through the absurd systems that are in place.

Meanwhile each separate piece of the jigsaw that makes up the system doesn’t seem to communicate well with each other.

Ahhhh...... vent over!

Thanks peeps !

My therapy yesterday was clearing out 3 kitchen cupboards! The joy in filling up the bin was palpable!

Celebrated with a limoncello & tonic ( not a total idiot hence the tonic!!) & lots of ice!!!

Obviously I’m not used to alcohol now & have a fuzzy head !!! On the positive side..

At least I’m a cheap date !!!!

 

[DesperateofDevon]

@DesperateofDevon my mum’s GP is not interested ... “it’s not like 70s where your local doctor visited you, you know” she told me. If she has a medical need, they’ll see her, but otherwise “you’re on your own”. It most definitely sucks!! I hope you are getting back a semblance of normal life...

That’s harsh! GPs are the Lynchpin in the care process.
I’m so sorry you have to experience this to.
I pestered SS until a SW was allocated & at least she’s lovely & understands & that puts a bit more pressure on the GP. Plus SS / council pick up the bill rather than the NHS.
Let me know how you get on
X

 

[Palerider]

I'm in a similar situation and agree with everyone else above. I have made sure the carers keep on coming regardless. They often stand outside and check mum is ok and leave if she refuses them. Mum sacked the cleaners over two years ago and has refused to have any since, which adds to my work load on top of everything else.

Its hard to watch this, but it is what it is and there isn't much we can do other than be bystanders waiting to help or make changes as the need arises, there is much testinomy to that on here

 

[DesperateofDevon]

Ah I learnt the hard way about keeping mums home clean. GP, social worker etc said Mum was coping as the house was so clean!!!

Silent screams over internet!

So now after last hospital admission I don’t clean!

Hard to not do but needs must !

 

[Bedllington]

Im in a very similar place. Mum cannot conceive that she has alzheimers, shecl was diagnosed a year ago but showed signs about 3 years ago.
Shes very angry, trying to be independent and not coping. I have spent hours and hours and... hours! Sorting carers, daycare, cleaners etc etc. With it all being chucked back in my face ... accepting day care for 5 visits then refusing to go back. I have now got a social worker appointment this week, to assess competency and mums needs. I really feel that she would be much safer in a care home and have found a 5 star brand new one locally. Im going to look at the home this week (my emotions are all over the place, sadness, guilt, greif...everything) ive no idea how we would get mum to go as i i have no doubt that she will kick off massively. Im at my wits end and cant take much more. I just hope SS recognize how bad mum is (shes a very good actor and hides it all so well) as badcas it sounds, i hope they agree with my thoughts about going into care. How awful this illness is and how it affects PWD family

 

[DesperateofDevon]

Ask for respite care at the home, maybe after a couple of weeks she won’t want to come home!
Or be assessed in the home & then the decision is taken out of your hands.
It’s a horrible disease that the emotional
toll on family & carers is not realised by others until they are in that situation.
It’s a bit of a no win situation; as the PWD often has no concept of the issues created by their behaviour- however frustrating it is. I hope things get easier, but don’t feel guilty, your Mum is lucky to have someone who cares so much. Many don’t.
Imagine how you would feel if she fell at home, broke a hip etc? You are doing your best in a difficult situation.
Good luck with the meeting & let us know how you get on.
X

 

[Nickinotnikki]

We were assigned a SW when we had the needs assessment ... but she’s now “closed the case” as they don’t have enough SWs to keep all cases open and as (1) we are self funding and (2) mum refused telecare, SW has also decided nothing more can be done, but says “do call SS again if her needs change. (!)

Just arrived back home after a 3hr drive following a weekend visit ... she’s trying her hardest to show she doesn’t need care ... and for once, her house wasn’t as bad as it’s could’ve been, and her cognitive functions seems to have perked up. Long may this plateau linger and give us all a break!!

That’s harsh! GPs are the Lynchpin in the care process.
I’m so sorry you have to experience this to.
I pestered SS until a SW was allocated & at least she’s lovely & understands & that puts a bit more pressure on the GP. Plus SS / council pick up the bill rather than the NHS.
Let me know how you get on
X