I suspect my parent has dementia

SoloCarer

New member
Mar 8, 2023
6
0
Hello

I am very uncertain about what to do.
I think my mother has dementia. Attempts to discuss things with her have either been closed down quickly or she has become angry. The symptoms have been worsening for about 18 months or so to the extent where other people have noticed. People who only see her once a week for a couple of hours have said to me that they think Mum may have dementia.
She cannot retain short term information reliably (or at all, often). Trying to get her to remember that something is happening on Monday, for example, is hopeless. No matter how many times she is told the information doesn't go in.
She is more withdrawn than before. She does have a hearing aid, which she uses and which works properly - I arrange to have this tested via a home visit every six months. In things like pub quizzes she is very quiet and questions that she should, easily, know the answer to she just gets wrong.
Time order is often misremembered and she thinks things happened in a different order, or she 'reinvents history' because she can't remember how something happened. If you attempt to correct her she gets angry - so generally I don't bother.
Local car journeys that she does regularly are fine, but if she drives anywhere not local or that she is unfamiliar with she will usually ask me to drive under a pretext, or I will offer because I want to do 'X' there or some similar excuse.
There have been some serious issues. A car journey that should have taken 90 minutes and that she has done several times before ended up taking over 7 hours - I was beside myself and close to calling the police when she finally messaged me. I have come home to find the house full of gas and mum totally oblivious to it.
I am the sole carer and have no siblings. My father died many years ago.
I am very tired and starting to become upset because I see no end in sight to this. I am unable to work because mum simply cannot be left alone for too long and she gets anxious. I have virtually no income - I am trying to claim UC but I am sure they will expect me to work because there is no formal diagnosis in place. I can understand this but it is very unhelpful for me.
I have spoken to the GP (we use the same practice) and explained my concerns. The GP is going to arrange for the practice matron to call in mum on the pretext of a sort of 'MOT' and health review as she is on long term medication for blood pressure.
Mum's diet is very poor - I am a good cook but I find it very difficult to persuade her to eat proper meals, and when she does she eats small quantities. She drinks probably 3 bottles of wine a week and is totally sedentary.
I am at a very low point now - I am worried that the GP may be unable to find anything obviously wrong. Mum presents, casually, reasonably well and on the face of it has no memory or mind issues. This isn't really the case though.
My question to the panel is: what on earth am I supposed to do going forwards ? Not just for myself, but for mum.
 

canary

Registered User
Feb 25, 2014
25,461
0
South coast
Hello @SoloCarer and welcome to Talking Point

Everything you have mentioned sounds so very familiar. I think it very likely that your mum has dementia, although obviously we cannot diagnose that on here.

It is good that your GP is getting the ball rolling with a visit under the pretext of a health MOT. It is likely that she will have to go to the memory clinic for a formal diagnosis, but there are a few things that you can do even without one.
Your mum is obviously very limited in what she can do now and is not safe to be left for long, so even if it doesnt turn out to be dementia she would still be eligible for Attendance Allowance as you dont need a diagnosis to apply, so you can apply now. I would get help in filling in the form from somewhere like Age UK or Citizens advice as you need to fill in the form as if it were the very worst day and it is easy to understate the difficulties. Once you have that you can apply for Carers Allowance for yourself. Its not much, but it will pay your National Insurance, will stop you being nagged to find work and there are other additional benefits on top that you may be eligible for.

The other thing you can do is ask Social Services for a needs assessment. You may not need this now, but there is often a waiting list and even if its decided that they cant offer anything its good to get on their "radar".

Also, try and get POA if you dont have this already. Your life will be much more difficult without it.

Once your mum has a formal diagnosis it will open doors to other help eg a local dementia hub. There is unfortunately, not a huge amount of support for dementia and what there is you usually have to look for, but a diagnosis will definitely help.
xx
 

Shirty

New member
Jan 7, 2023
7
0
Hello @SoloCarer and welcome to Talking Point

Everything you have mentioned sounds so very familiar. I think it very likely that your mum has dementia, although obviously we cannot diagnose that on here.

It is good that your GP is getting the ball rolling with a visit under the pretext of a health MOT. It is likely that she will have to go to the memory clinic for a formal diagnosis, but there are a few things that you can do even without one.
Your mum is obviously very limited in what she can do now and is not safe to be left for long, so even if it doesnt turn out to be dementia she would still be eligible for Attendance Allowance as you dont need a diagnosis to apply, so you can apply now. I would get help in filling in the form from somewhere like Age UK or Citizens advice as you need to fill in the form as if it were the very worst day and it is easy to understate the difficulties. Once you have that you can apply for Carers Allowance for yourself. Its not much, but it will pay your National Insurance, will stop you being nagged to find work and there are other additional benefits on top that you may be eligible for.

The other thing you can do is ask Social Services for a needs assessment. You may not need this now, but there is often a waiting list and even if its decided that they cant offer anything its good to get on their "radar".

Also, try and get POA if you dont have this already. Your life will be much more difficult without it.

Once your mum has a formal diagnosis it will open doors to other help eg a local dementia hub. There is unfortunately, not a huge amount of support for dementia and what there is you usually have to look for, but a diagnosis will definitely help.
xx
Hello

I am very uncertain about what to do.
I think my mother has dementia. Attempts to discuss things with her have either been closed down quickly or she has become angry. The symptoms have been worsening for about 18 months or so to the extent where other people have noticed. People who only see her once a week for a couple of hours have said to me that they think Mum may have dementia.
She cannot retain short term information reliably (or at all, often). Trying to get her to remember that something is happening on Monday, for example, is hopeless. No matter how many times she is told the information doesn't go in.
She is more withdrawn than before. She does have a hearing aid, which she uses and which works properly - I arrange to have this tested via a home visit every six months. In things like pub quizzes she is very quiet and questions that she should, easily, know the answer to she just gets wrong.
Time order is often misremembered and she thinks things happened in a different order, or she 'reinvents history' because she can't remember how something happened. If you attempt to correct her she gets angry - so generally I don't bother.
Local car journeys that she does regularly are fine, but if she drives anywhere not local or that she is unfamiliar with she will usually ask me to drive under a pretext, or I will offer because I want to do 'X' there or some similar excuse.
There have been some serious issues. A car journey that should have taken 90 minutes and that she has done several times before ended up taking over 7 hours - I was beside myself and close to calling the police when she finally messaged me. I have come home to find the house full of gas and mum totally oblivious to it.
I am the sole carer and have no siblings. My father died many years ago.
I am very tired and starting to become upset because I see no end in sight to this. I am unable to work because mum simply cannot be left alone for too long and she gets anxious. I have virtually no income - I am trying to claim UC but I am sure they will expect me to work because there is no formal diagnosis in place. I can understand this but it is very unhelpful for me.
I have spoken to the GP (we use the same practice) and explained my concerns. The GP is going to arrange for the practice matron to call in mum on the pretext of a sort of 'MOT' and health review as she is on long term medication for blood pressure.
Mum's diet is very poor - I am a good cook but I find it very difficult to persuade her to eat proper meals, and when she does she eats small quantities. She drinks probably 3 bottles of wine a week and is totally sedentary.
I am at a very low point now - I am worried that the GP may be unable to find anything obviously wrong. Mum presents, casually, reasonably well and on the face of it has no memory or mind issues. This isn't really the case though.
My question to the panel is: what on earth am I supposed to do going forwards ? Not just for myself, but for mum.
Hello Solocarter,
I’m sorry to hear about your situation. I am also new to the forum having come here for information and support as my mother in law has dementia. Regarding your financial situation, Canary is right, attendance allowance will enable you to claim carers allowance but you can also go right ahead and claim UC now. Declare on the application that you are caring full time, it doesn’t matter that the attendance allowance isn’t sorted out yet. They should not expect you to look for work as long as you are caring for over 35 hours per week. I hope this helps.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,442
0
Nottinghamshire
A warm welcome to Dementia Talking Point @SoloCarer and @Shirty .
@solocater, write a bullet pointed list of all your concerns about your mum to hand in to the practice matron ahead of the appointment so they can see exactly what your concerns are. I’d also second what @canary was saying about getting power of attorney sorted.
I’m glad you’ve both found us, this is a very friendly and supportive site.
 
Last edited:

CAL Y

Registered User
Jul 17, 2021
649
0
@SoloCarer . I’m sorry to hear about your mother.
One thing I would say is that if she is still driving Please try to stop her.
It won’t be easy and you might have a fight on your hands but it’s imperative that she doesn’t drive .
This is not only a dangerous situation for her and other road users but under these circumstances, if an accident were to occur she would probably not be covered by insurance.
 

SoloCarer

New member
Mar 8, 2023
6
0
Many thanks to all who replied - it's such a wretched situation in all ways.

I have adjusted my UC claim. I didn't realise that you could put down carer without some sort of formal diagnosis in place - that's taken a real weight from my mind. UC isn't brilliant but I have almost no income now so anything is helpful.

With the driving, this is really hard. I have spoken to the Alzheimer's helpline earlier and their advice was to limit mum's driving until she's seen the GP. I can do this because generally if it isn't a route within a few miles of home that she knows really well she will try to think of a reason to get me to drive her. Once she has a diagnosis the GP/Doctor will notify DVLA and mum will probably be assessed to see if she can keep driving or not.

I am now waiting for the letter from the GP inviting her to go in and I am keeping everything crossed that the 'MOT' that they're going to do uncovers the problem. I don't know what I'm going to do if it doesn't but I'll cross that bridge when I come to it. My worry is that Mum 'presents' well. People who know her have seen the decline and commented to me, but anyone who doesn't know her would think she's doing pretty well for mid 70's. I daresay this is common in the early stages.
 

SoloCarer

New member
Mar 8, 2023
6
0
So, some considerable time has passed and after much cajoling and persuasion and - frankly - tears with the surgery, the practice matron visited mum today to assess her. Mum wanted privacy so I left them to it. They were there for around an hour.

Afterwards Mum was very happy because apparently there is nothing wrong with her mentally and she passed every test. I spoke to her about it and asked what tests she did. Apparently she had to recite the months of the year backwards, count backwards from 20 and also was given an address which she had to remember and recall later on. The first two I think perhaps wouldn't have been a big deal but the address I find hard to believe she could do.

I haven't spoken to or heard from the Matron.

I'm now more depressed about this than ever. Mum's cognitive issues are so apparent to anyone who lives with her. I spoke extensively to the Matron before her visit last week and outlined some of the issues and gave several examples of fairly 'macro level' memory issues and the fallout from these problems. But I also warned her that if she came and had a coffee with Mum and a chat, she may not realise anything is wrong because Mum is very good at concealing things and she just makes stuff up that seems plausible - it's only if you KNOW her that you realise it's all made up.

I just do not know what to do. I feel the surgery have done what they should (finally) but if Mum really has passed the tests then I'm sort of at the end of the road. What is anyone supposed to do in this situation? I have no other family - I'm an only child and my father died around 10 years ago. I am financially in a very precarious position - my UC claim is in but I am refused carer's allowance because there is no formal diagnosis for Mum. I cannot accept a job because Mum really cannot be left alone for extended periods.

I'm totally lost now.
 

Banjomansmate

Registered User
Jan 13, 2019
5,701
0
Dorset
I should wait a few days to see if the GP surgery get back to you, although they might not speak to you without your Mother’s permission. You may find she receives an appointment for the memory service or she gets called in for blood tests to rule out other medical problems.
 

canary

Registered User
Feb 25, 2014
25,461
0
South coast
Hello @SoloCarer

It is always a disappointment when others dont seem to see what you see. This is usually due to a phenomenon known as Hostess Mode where they can suppress their dementia symptoms for short lengths of time, although it takes a lot of effort and leaves them very tired afterwards. However, you only have your mums word on what happened and it may well not be accurate.

However, even if she did pass the tests this does not mean that all is lost. You can try again in a few months and, in the meantime you can apply for attendance allowance as this is not dependant on a diagnosis. Do get someone like Age UK, a carers organisation, or Citizens Advice to help you fill in the form as it is complex and very easy to downplay the problems. You have to fill it in assuming that it is the worst day.
You do not have to have a diagnosis to claim Carers Allowance either, but your mum does have to have Attendance Allowance before you can claim it
 

SoloCarer

New member
Mar 8, 2023
6
0
Mum doesn't have attendance allowance - sorry, but why would she ? In her eyes there is nothing wrong so no reason to apply for it.

The 'hostess mode' I am aware of from background reading which is why I pre-warned the Matron about her appearing plausible on the surface. I have been at this for probably something like 18 months and have spent the last 9 months trying to get a visit from the surgery because Mum simply will not go in and whenever I try to discuss her medical issues she becomes very angry and it is, frankly, a storm I am not willing to weather.

I don't think I can carry on like this and I want to walk out and leave her to it and the cards fall as they may - and if she ends up dead because she's left the gas on again, well, so be it. It's not my fault. That's how bad I feel.
 

canary

Registered User
Feb 25, 2014
25,461
0
South coast
Mum doesn't have attendance allowance - sorry, but why would she ? In her eyes there is nothing wrong so no reason to apply for it.
You can apply for it on her behalf - I did for mum before she got her diagnosis.
Most people with dementia dont think they have anything wrong with them
 

SoloCarer

New member
Mar 8, 2023
6
0
OK - but if I apply for it she wil get angry. I mean REALLY angry. She does this whenever I discuss medical issues and that will provoke a massive storm because I will have done this behind her back and implied she's incapable of looking after herself. I'm not willing to do this.

It's just an impossible situation - I honestly wish she was dead at times because I'm so sick of it and then I hate myself for being so horrible.
 

canary

Registered User
Feb 25, 2014
25,461
0
South coast
No-one has the responsibility of care - Social Services do, so if you do decide to walk out, then you can. Id let SS know if you do that, though.