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What help/support can I get for my mum WITHOUT an official diagnosis?

Debbie Ann C

New member
Apr 1, 2020
9
In order to get her diagnosed I know I need to get her in contact with her Dr but this is where the problem starts. She is VERY anti Dr and anti medication, always has been and every time I mention the Dr she is suddenly ok ‘I’m fine’ she says... she is not....
I am continuing to persuade mum to call the dr and if that doesn't work I will probably see if I can get the dr to call her but I’m worried that this will betray her trust which I have at the moment. I dont want her to turn against me as it will make everything so much harder. So my question is can I get mum home help without an official diagnosis. She can safely cook and keep her self and the bungalow clean and tidy so this is fine. I just need someone who understand how to handle dementia to call on her regularly to just check she’s ok. She gets really worried and panicky when letters from the bank or any unexpected post arrives. once we have POA we can re direct her mail but there will always be something she gets in a panic about. She can’t understand things anymore. She does ring me and we speak daily but I’m in Wales and she is in Cheltenham so I can’t pop in to check she is ok (esp. at the moment) The neighbours have ‘fallen out with her’ and they don’t speak. She has only one friend who is self isolating and it’s also not fair on him to be the one to ‘look after‘ mum. He’s late 70’s and has his own life to live.
Any advise gratefully received
 

karaokePete

Registered User
Jul 23, 2017
5,452
N Ireland
Hello @Debbie Ann C and welcome to the forum. You have come to the right place for information and support.

As you state, the best thing to do in this situation is have a chat with the GP. Many treatable conditions, such as depression, stress, thyroid problems, vitamin deficiencies etc., can cause dementia like symptoms so it's important to have a check-up. Please don't cause additional stress by jumping to the immediate conclusion that it's dementia. On the other hand, if it is dementia then a diagnosis may open up support for you. Some members have managed to get an examination by colluding with the GP to call their loved one in for something like a wellwoman appointment as the older generation can obey a doctor where they are refusing family.

Here is a link to a Society Fact sheet about the diagnosis issue. Just click the second line to read or print the document

Assessment and diagnosis (426)
PDF printable version

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

On the subject of help, any vulnerable adult is entitled to an assessment so it's worth talking to the GP or local Social services about that.
 

lemonbalm

Registered User
May 21, 2018
185
My mum detested doctors and nobody ever managed to do memory tests, as it made her panic and get aggressive. Anybody can arrange help at home and many agencies offer a simple pop in service, just to check all is well, which would help put your mind at rest. Would your mum be ok with strangers popping in?

Without an assessment, you would have to pay for this yourself or, when you have POA in place, pay the agency from your mum's account. You could perhaps do this in the short term if it if financially possible while you are considering your next step. Best to make it clear that you don't want invoices sent to your mum but to you in any case.

I couldn't get my mum to accept carers for more than a couple of weeks when she was just out of hospital after breaking a hip, but I lived much closer so could do it all myself as long for as it was possible to keep her in her flat.
 

Sarasa

Registered User
Apr 13, 2018
1,235
Hi @Debbie Ann C, and welcome to Dementia Talking Point, you'll find lots of help and advice here.
My mum wasn't anti doctors as such, she was often at her doctor's surgery worrying over minor issues, but she certainly would not have gone along with the idea that she needed testing for dementia. As far as she was concerned she was perfectly fine. I kept a diary of my concerns , emailed them to the GP and then piggybacked an appointment for something else to get the ball rolling on getting a diagnosis. You could try , if nothing else, alerting her GP means he/she is aware of the situation.
I too couldn't get any help from the local dementia association, but Age UK did have a scheme in her area where someone would come round to keep you company or do light housework (not personal care). I suggested it to mum and the person visited, but mum insisted she didn't need help. You could also try care agencies for similar help. The problem of course is at the moment they'll all be working flat out, so may not be taking new clients.
It might well be worth flagging things up with Social Services, just so they are aware, and at the moment local councils are co-ordinating volunteers to check on vulnerable people. This appears to be the one for your mother's area.
Hope that helps. I found that things were OK for a long while, then it became obvious that mum really wasn't coping and I had to move her into care, so it might be worth looking at those options as well either near her or near you. You won't be able to visit any at the moment, but at least you can look at their websites and read the Care Quality Commission Reports.
 

Jale

Registered User
Jul 9, 2018
443
My mum refused to go to the doctors for anything except blood pressure checks with the practice nurse. When we suspected dementia I wrote a letter to her GP (we hadn't go POA at that point) explaining what had been happening, how mum was behaving etc. I asked if the GP could make her an appointment under the pretext of having her blood pressure and medication check. When we got to the doctors surgery for the appointment the doctor told her that the nurse was off sick and she would be doing the bp check and tablet review, oh and they were also "doing checks on the over 80's to see if the medication was ok. Mum did the checks - managed a couple, but not all and from there she was referred to the memory clinic, but when they sent her an appointment for a brain scan I cancelled it as I knew she would get distressed and upset at the thought of having it. I spoke to someone from the memory clinic and they agreed that in mum's case it would not be suitable. They saw her records from the GP and said although they couldn't be 100% certain without the scan, they did say that she had vascular dementia.

Good luck
 

canary

Registered User
Feb 25, 2014
12,216
South coast
My OH does not have an official diagnosis, but we have been able to put together a lot of things.

I started with AgeUK and their Home Help scheme. They can get someone in to clean the house, do ironing, sit and chat, or whatever. It is cheaper than getting carers in, but they cannot do personal care (ie no help with washing dressing, medication, etc), but it was a good introduction to someone coming into the home and if you just want someone to pop in and to check your mum is OK it might be a good place to start.

Once OH needed help with showering, dressing, shaving etc I contacted care agencies and organised it myself. I did this because I knew that we were just over the threshold for being self-funded, but I also requested a needs assessment from Social Services. Even though OH didnt have a diagnosis there was no problem and the SW agreed that he needed help with personal care. I also asked the SW if he could be referred to day care. This was trickier as most of the places need a diagnosis before they will accept them, and also, OH is too young for many places. There is one place that he could go to and I was just in the process of organising it when everywhere shut because of covid (sigh). Age UK has only a skeleton staff now and my Home Help is not coming until the lockdown is lifted. The agency carers are still coming, but the agency is not taking on any more clients at the moment.

Which brings us back to the way everything seems to have stopped because of the virus. You probably wont be able to put anything into place at the moment, but you can still request a needs assessment from SS. Then you will be ready when the restrictions are lifted.
 

Debbie Ann C

New member
Apr 1, 2020
9
My OH does not have an official diagnosis, but we have been able to put together a lot of things.

I started with AgeUK and their Home Help scheme. They can get someone in to clean the house, do ironing, sit and chat, or whatever. It is cheaper than getting carers in, but they cannot do personal care (ie no help with washing dressing, medication, etc), but it was a good introduction to someone coming into the home and if you just want someone to pop in and to check your mum is OK it might be a good place to start.

Once OH needed help with showering, dressing, shaving etc I contacted care agencies and organised it myself. I did this because I knew that we were just over the threshold for being self-funded, but I also requested a needs assessment from Social Services. Even though OH didnt have a diagnosis there was no problem and the SW agreed that he needed help with personal care. I also asked the SW if he could be referred to day care. This was trickier as most of the places need a diagnosis before they will accept them, and also, OH is too young for many places. There is one place that he could go to and I was just in the process of organising it when everywhere shut because of covid (sigh). Age UK has only a skeleton staff now and my Home Help is not coming until the lockdown is lifted. The agency carers are still coming, but the agency is not taking on any more clients at the moment.

Which brings us back to the way everything seems to have stopped because of the virus. You probably wont be able to put anything into place at the moment, but you can still request a needs assessment from SS. Then you will be ready when the restrictions are lifted.
Thank you
 

Debbie Ann C

New member
Apr 1, 2020
9
My mum refused to go to the doctors for anything except blood pressure checks with the practice nurse. When we suspected dementia I wrote a letter to her GP (we hadn't go POA at that point) explaining what had been happening, how mum was behaving etc. I asked if the GP could make her an appointment under the pretext of having her blood pressure and medication check. When we got to the doctors surgery for the appointment the doctor told her that the nurse was off sick and she would be doing the bp check and tablet review, oh and they were also "doing checks on the over 80's to see if the medication was ok. Mum did the checks - managed a couple, but not all and from there she was referred to the memory clinic, but when they sent her an appointment for a brain scan I cancelled it as I knew she would get distressed and upset at the thought of having it. I spoke to someone from the memory clinic and they agreed that in mum's case it would not be suitable. They saw her records from the GP and said although they couldn't be 100% certain without the scan, they did say that she had vascular dementia.

Good luck
Thank you so much. i have been worried about the suggestion of a brain scan. That would absolute tip her over the edge so it’s encouraging to read that this might be avoided. Thanks again .
 

sjm80

New member
Dec 20, 2017
3
Debbie Ann C - Thank you for sharing your story. Sometimes it seems like many people have had a diagnosis and the person goes along with things, but that's often not the case. We are in a very similar situation so it's helpful to read the ideas. I can relate to your situation.

Can a GP consultation alone be sufficient to get a diagnosis or are blood tests and scan required? There's no way we could get her to do those. Unfortunately mum has not seen a doctor in years and she's now 80 and blatantly refuses to, so even that may be hard. Perhaps the flu jab or something could be used as a reason for a visit.
 

Debbie Ann C

New member
Apr 1, 2020
9
Debbie Ann C - Thank you for sharing your story. Sometimes it seems like many people have had a diagnosis and the person goes along with things, but that's often not the case. We are in a very similar situation so it's helpful to read the ideas. I can relate to your situation.

Can a GP consultation alone be sufficient to get a diagnosis or are blood tests and scan required? There's no way we could get her to do those. Unfortunately mum has not seen a doctor in years and she's now 80 and blatantly refuses to, so even that may be hard. Perhaps the flu jab or something could be used as a reason for a visit.
 

Debbie Ann C

New member
Apr 1, 2020
9
I‘m going to contact social services to see if we can get a care needs assessment without a diagnosi. I’ll let you know how this goes. We keep mentioning the dr hoping that she will eventually think it’s a good idea.... flu jab is a great idea. Unfortunately I think she’s already had it for this year but I’ll check.
Thanks for sharing. Good to know we are not alone in our difficultie.
 

canary

Registered User
Feb 25, 2014
12,216
South coast
flu jab is a great idea. Unfortunately I think she’s already had it for this year but I’ll check.
Would she actually remember whether she has had a flu jab? The idea is to use some sort of ruse to get her to the doctor. It doesnt matter whether its true or not.
 

worriedson77

Registered User
Jan 29, 2020
51
Hi @Debbie Ann, just to echo the above, firstly I have had a wealth of help from this board which has been invaluable and would say that the hardest part for me was feeling like I was trying to almost manipulate/fib to my mum (She was accusing me of doing this anyway but to the degree of me trying to steal from her). Your experience of the post is a replica of mine which is why I posted. The tips from here such as keeping a log and certainly engaging with the dr really helped as they have lots of experience of getting to see patients that are unwilling to see them but obviously right now is not great for this to happen. For me the advice to take a day at a time, dont take things personally and to think with the end on mind really helped me (So I'm no longer afraid to tell love lies from time to time) and the poa and stuff you are doing is perfect, take care.
 

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