My mum - advice needed

Rohan

New member
Nov 22, 2021
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Hi everyone,

My mum (72) has not been diagnosed with dementia but she's convinced herself she has it. I can’t deny that it does seem to be heading that way but I also wonder how much of it has been her telling herself over the years that she’s going to get it/has it. Bit like a self-fulfilling prophecy.

Her mum was diagnosed with Alzheimer but much later on in life and mum has convinced herself that because her mum had it and because she has problems with her memory, she therefore must have it too. It is and has been for many years her biggest fear, as she watched her mum go through it and it is, as we all know, one of the most evil diseases.

Mum has lived alone for many years so is used to (and content with) her own company. But, like so many others during that first lockdown, having all that time alone had a detrimental impact on her. When the support bubble was introduced it of course made things so much better for her as she was able to join my bubble (along with my husband and our daughter).

In May of this year she also developed some severe neck pains which she’s been under investigations for and which is still (very frustratingly) ongoing. She’s not in pain every day but it has affected her a lot and has, she says, put her life on hold.

Since the lockdown and her neck pain she has (I hate to use this word) ‘deteriorated’ I feel a lot. She used to belong to a choir pre-Covid which was a huge part of her life. Since choirs have opened up their doors again she hasn’t been back. She seems depressed to me and when I try to discuss this with her and her maybe speaking to someone she says “what’s the point”.

We had a chat a few days ago whereby she opened up more and told me that thought I was maybe in denial about the [dementia] road she is on. She said that I have very little patience for her and she worries if I’m like this now what will I be like when things get worse.

Now firstly I would say that a) she hasn’t had a diagnosis of Dementia so she surely needs to stop using this language and convincing herself she has it; b) go and see a doctor to see whether she does have it (but she’s too scared to do this); d) she is a very negative person and this is what I struggle with. She complains about A LOT. Much of the time!

I told her I’m not in denial at all and accept that it could be a reality but that unless she’s going to do something about it and see a doctor, then she MUST do things to help herself. I told her how I have struggled to know how to handle her negativity as it has an impact on me and my family. She wonders why my daughter (8) is not as close to her as she used to be but to me it’s obvious - my daughter has seen/felt the change in mum these past few years and she probably doesn’t know how to handle her either.

Mum also told me that last week she came downstairs with a basketful of dirty washing, bent down to the washing machine, put the clothes in the machine and then just stared at the machine not knowing how to operate it. She said that it scared her, which of course it would do. She managed to find the manual and figure it out and has now put a note on the machine so that should that happen again, she’ll know what to do.

She also said that occasionally (approximately a few times a month), she has this ‘sensation’ which she finds incredibly hard to verbalise, but she says it’s like she’s not really there, like she’s looking at herself (?!?!). It’s a sensation she says which feels horrible and frightening for her. It doesn’t last long and has only ever happened when she’s been at home. Is anyone able to say whether things like this are ‘common’ for dementia?

I would really appreciate some advice from people who are in the same boat as me in terms of how I can best support mum.

Mum and I have always been close. For many years it was just her and I. I do have an older brother who I’m very close to and who also does help where he can, but he lives up North and therefore the ‘burden’ falls much more on me.

Mum and I are not as close as we were. We are both to blame for this. I know I need to be more patient. I want to believe that if she was diagnosed with dementia then I would have more patience but I get hugely frustrated with her as I have to listen to her using such bad, negative language on herself, saying things like “oh you know what my memory’s like” and “because I have such a bad memory…..”. She knows how powerful the mind is and what we talk about regularly, we bring about.

Sorry for the long post, I could go on with so much more too! Any advice would be greatly received and thank you in advance for taking the time to read this.
 

Jessbow

Registered User
Mar 1, 2013
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Midlands
Funny old place to be. Forgetting how to use the washing machine is one thing- have the thought pattern to find the manual and find out ( never mind writing the instructios and sticking on the mahine) doesnt sound like typical dementia to me.

Supporther by just letting it wash over you.
 

silkiest

Registered User
Feb 9, 2017
865
0
Hi @Rohan,
you are right in that many conditions can give similar symptoms to dementia and she might not have it, depression, hypothyroidism, anaemia, diabetes and vitamin deficiencies can all make people concerned. So much so that the guidelines for GP's tell them to test for and exclude these conditions first and if they are present to stabilise them before referring to memory clinic for dementia assessment if the symptoms persist
I would try being really positive with your mum about the need for a checkup and tests for conditions that can be treated and improve her quality of life.
Genetically if you inherit 1 alzheimers gene from a parent and non from the other you only have a 20% increased risk to the general population.
"vague" episodes could be mini strokes as well as other things. If your mum has not been diagnosed with cardiovascular problems it would certainly seem worthwhile to have her blood pressure and cholesterol checked, as again medication can help.
I can understand her fears as both my mum and grandmother suffered with this condition. I have tried to reduce the risk by keeping mentally active and positive, but I have also set up Power of Attorneys for both finance and health and discussed my wishes with my family. Would your mum see setting up POA as a positive act to protect her future self?
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
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Nottinghamshire
Hi @Rohan, I think the best thing would be to suggest your mum goes to the GP. There are other things such a thyroid problems, depression or vitamin deficiency that can mimic dementia, so those need to be ruled out. Supporting her while she gets investigated would show her you are not being dismissive of her concerns.
 

Rohan

New member
Nov 22, 2021
5
0
Hi @Rohan,
you are right in that many conditions can give similar symptoms to dementia and she might not have it, depression, hypothyroidism, anaemia, diabetes and vitamin deficiencies can all make people concerned. So much so that the guidelines for GP's tell them to test for and exclude these conditions first and if they are present to stabilise them before referring to memory clinic for dementia assessment if the symptoms persist
I would try being really positive with your mum about the need for a checkup and tests for conditions that can be treated and improve her quality of life.
Genetically if you inherit 1 alzheimers gene from a parent and non from the other you only have a 20% increased risk to the general population.
"vague" episodes could be mini strokes as well as other things. If your mum has not been diagnosed with cardiovascular problems it would certainly seem worthwhile to have her blood pressure and cholesterol checked, as again medication can help.
I can understand her fears as both my mum and grandmother suffered with this condition. I have tried to reduce the risk by keeping mentally active and positive, but I have also set up Power of Attorneys for both finance and health and discussed my wishes with my family. Would your mum see setting up POA as a positive act to protect her future self?
Thank you for your reply.

I can confirm that I am in the process of setting up LPAs for mum and will be sending these off tomorrow actually to be registered so that's all in hand. Mum knew that it made good sense to have that all in order.

I don't think I understand your comment about a "20% increased risk to the general public". Could you please clarify?

She is SO fearful of seeing a GP about this but also, in fairness to her, these ongoing issues she's having with her neck and all the various scans she's had/having are taking over rather a lot. Therefore adding this to the mix as well is just too much at the moment.

She's under a neurologist who arranged her most recent full body and brain MRI (where they use dye) so guess we'll see what comes of that.
 

DreamsAreReal

Registered User
Oct 17, 2015
476
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@Rohan I think it means a 20% increased compared to the general public (ie, people who don’t have that gene).

I don’t know how old your Mum is, but menopause can bring cognitive impairment sometimes. More like brain fog than dementia, but it does feel like your brain isn’t working properly. It’s quite depressing to find yourself getting older and slower and I’m not surprised your Mum is negative about it. Do try to be patient with her, it sounds like you’re her only support right now (?). I know it’s easy for me to say and hard to do. Edit: she’s 72, just noticed, doh.

Just in case she does have Dementia, have you seen the Compassionate Communication guide? It’s not possible to do it all the time unless you’re a saint, but it does make a difference if you can remember to do it even just sometimes.

The washing machine incident could be any kind of brain fog by the sound of it (I have it from med side effects and it happens to me sometimes). But the feeling of being outside of herself looking in is more concerning. Sounds like the kind of thing my mum says (she has mixed dementia). That doesn’t mean it is, though.

It will be interesting to see the results of the scan. Does the Neurologist know she suspects dementia? If not, it would be wise to let him know. Best of luck to you both x
 

Rohan

New member
Nov 22, 2021
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@Rohan I think it means a 20% increased compared to the general public (ie, people who don’t have that gene).

I don’t know how old your Mum is, but menopause can bring cognitive impairment sometimes. More like brain fog than dementia, but it does feel like your brain isn’t working properly. It’s quite depressing to find yourself getting older and slower and I’m not surprised your Mum is negative about it. Do try to be patient with her, it sounds like you’re her only support right now (?). I know it’s easy for me to say and hard to do.

Just in case she does have Dementia, have you seen the Compassionate Communication guide? It’s not possible to do it all the time unless you’re a saint, but it does make a difference if you can remember to do it even just sometimes.

The washing machine incident could be any kind of brain fog by the sound of it (I have it from med side effects and it happens to me sometimes). But the feeling of being outside of herself looking in is more concerning. Sounds like the kind of thing my mum says (she has mixed dementia). That doesn’t mean it is, though.

It will be interesting to see the results of the scan. Does the Neurologist know she suspects dementia? If not, it would be wise to let him know. Best of luck to you both x
Thank you @DreamsAreReal for taking the time to respond.

Mum is 72 and has gone through her menopause many years ago.

I am mum's main support and know I need to be more patient. And I want to be more patient. But she lets such insignificant things affect her in such a big way (and I know the reason why just as she does - because its easier to 'sweat' the small things in life rather than face the big things). The negativity she has affects those around her, including my 8 year old daughter and that I can't of course ignore.

Mum and I are both firm believers in the power of our minds and she should (I don't like that word but using it anyway!) know better. I see a tense, negative person a lot of the time and that can only have a detrimental impact on her physical health!

I don't think her neurologist knows about her fears of dementia and agree it's definitely worth mentioning it to him.

I haven't seen the Compassionate Communication guide but will search for it. Thank you.
 

DreamsAreReal

Registered User
Oct 17, 2015
476
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Thank you @DreamsAreReal for taking the time to respond.

Mum is 72 and has gone through her menopause many years ago.

I am mum's main support and know I need to be more patient. And I want to be more patient. But she lets such insignificant things affect her in such a big way (and I know the reason why just as she does - because its easier to 'sweat' the small things in life rather than face the big things). The negativity she has affects those around her, including my 8 year old daughter and that I can't of course ignore.

Mum and I are both firm believers in the power of our minds and she should (I don't like that word but using it anyway!) know better. I see a tense, negative person a lot of the time and that can only have a detrimental impact on her physical health!

I don't think her neurologist knows about her fears of dementia and agree it's definitely worth mentioning it to him.

I haven't seen the Compassionate Communication guide but will search for it. Thank you.
@Rohan I edited my post to include the link and also your mum’s age. I do sympathise - I always go into mum’s with the best of intentions but when there’s a bit of history there, it’s easy to get triggered and lose your patience!
 

canary

Registered User
Feb 25, 2014
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South coast
I think that many people who have cared for someone with dementia worry that they will get it too - I know I do sometimes. When I just cant remember someones name, or the word I want, suddenly realise that Im looking in the fridge for a book, or have forgotten (again!) to put the dinner in the oven, then I seriously begin to wonder if its the start of dementia, but I keep telling myself that its probably just stress. I recognise the feeling of looking down on yourself doing things and that is definitely stress. The neck pain could be stress too - when you are stressed you tend to tense all your muscles, particularly the ones in your neck and shoulders, resulting in muscular pain, although I realise that it is important to check for other things.

The only way that you can be sure, though, is by testing. If your mum wont go to the GP then what you could do is write a letter, or send an email, to her GP outlining your concerns. You may not get a reply due to patient confidentiality, but your letter will go in her file and next time she sees her GP they will see the letter and may surreptitiously do one or two tests. I would also suggest that you contact the neurologist explaining your concerns in the same way.
 

Rohan

New member
Nov 22, 2021
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I think that many people who have cared for someone with dementia worry that they will get it too - I know I do sometimes. When I just cant remember someones name, or the word I want, suddenly realise that Im looking in the fridge for a book, or have forgotten (again!) to put the dinner in the oven, then I seriously begin to wonder if its the start of dementia, but I keep telling myself that its probably just stress. I recognise the feeling of looking down on yourself doing things and that is definitely stress. The neck pain could be stress too - when you are stressed you tend to tense all your muscles, particularly the ones in your neck and shoulders, resulting in muscular pain, although I realise that it is important to check for other things.

The only way that you can be sure, though, is by testing. If your mum wont go to the GP then what you could do is write a letter, or send an email, to her GP outlining your concerns. You may not get a reply due to patient confidentiality, but your letter will go in her file and next time she sees her GP they will see the letter and may surreptitiously do one or two tests. I would also suggest that you contact the neurologist explaining your concerns in the same way.
Thank you @canary for taking the time to respond.

I wish mum would accept that some (if not all) of the things she feels/experiences could easily be something else. It is not a foregone conclusion that she has or will have dementia. Just wish she accepted that.

The neck thing is likely wear and tear from years of figure work (she is a retired book keeper) but guess we'll see in a weeks' time when mum has her phone call with the neurologist.
 

silkiest

Registered User
Feb 9, 2017
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Hi @Rohan, everyone has a certain risk of developing alzheimer's and the likelihood increases with age. The genetic component increases the risk but does not mean you will definitely inherit it. If you inherit one of the genes your risk of developing alzheimers is only 20% (at the most) higher than the general population. That risk increases further if 2 genes are inherited.
On the other hand you can reduce your risk by living a healthy, active lifestyle - no smoking or alcohol, healthy food etc.
The trouble is its all a gamble and it's a case of trying to tip the odds in your favour.
 

canary

Registered User
Feb 25, 2014
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South coast
Id just like to point out that most cases of Alzheimers are sporadic - ie there is no genetic reason for the disease. Only 1% of cases have a genetic component.
 

Violet Jane

Registered User
Aug 23, 2021
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You say that your mother has deteriorated but in what ways other than being negative and anxious? Does she have memory problems, struggle with every day tasks or with handling money, forget appointments, have a poor sense of time? Obviously, dementia is a possibility but so are other things including anxiety and depression. It sounds as if the lockdown and the unresolved neck problem have really taken a toll on her. There is no alternative to going to the doctor though. Yes, she is fearful about what she might be told but she’s fearful anyway and the fear is ruining her life.
 

Rohan

New member
Nov 22, 2021
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You say that your mother has deteriorated but in what ways other than being negative and anxious? Does she have memory problems, struggle with every day tasks or with handling money, forget appointments, have a poor sense of time? Obviously, dementia is a possibility but so are other things including anxiety and depression. It sounds as if the lockdown and the unresolved neck problem have really taken a toll on her. There is no alternative to going to the doctor though. Yes, she is fearful about what she might be told but she’s fearful anyway and the fear is ruining her life.
Thanks @Violet Jane for taking the time to respond. You are SO right about the fear ruining her life. I will definitely try and talk with her about this all again.

In terms of her deterioration, before the first lockdown she was happy. Obviously not all day every day but happy nonetheless. Yes she complained about things but it was in proportion and because the rest of her life was much more fulfilled, she naturally had less to complain about.

Other than the negativity, the ‘deterioration’ has also been her memory getting worse, she repeats herself more and can ask you about something you’ve only moments previously talked about.

She never misses appointments - and she’s had LOTS these past months coz of her neck problems. She uses her calendar. She also writes down what she has to take regarding her meds but as far as I’m concerned anyone would need to do that to keep track of it all as she takes rather a lot!

‘Deterioration’ may be a poor choice of word.