Pretty sure my mum has dementia

[El31]

for the last few years I have seen my mum go through some very odd changes and I'm pretty sure it's dementia. She is 69 and her personality has completely changed.. She has no empathy for people and comes across really cold and rude..She no longer completes housework, she sleeps in an unmade bed most of the time and her bedroom is filthy, she washes up with cold water, no washing up liquid and using her hands which leaves food all on the plate so they always need re-washing..everyday is pretty much the same for her, she will get up about 5.30am, insist on going to the shops at around 7am and throughout the day she will go to the shop about 5 times, its like she gets the idea in her head and she has to go..she will then have a bath around 4pm and go to bed at 6pm.. She repeats herself constantly and only talks about a handful of things, she forgets words and sometimes what shes talking about mid conversation, She also almost chants to herself so will say things over and over like "I'm going out now, I'm going out now, I'm going out now". She is very vague also and will sometimes just stare in to space during a conversation, almost like she doesn't know how to answer. She is obessed with shopping and comes home with a new top every couple of days, she also has a crazy obsession with sweet foods when she used to be very healthy and hardly touch sweets.. She is obsessed with cornetto ice creams and also the drink schloer.. she had to rush out today because she only had 2 bottles left.
She forgets to take her bag out with her a lot of the time, occasionally locked herself out the house, she struggles with the sequencing of cooking now and will get flustered while cooking a roast, she also has awful table manners and will just pick food up with her hands and eat before anyone else has sat down.
My dad is 75 and is very fit and healthy and is doing an amazing job but she is driving him mad. I'm 32 and have 2 brothers aged 35 and 38 and we try and visit to help out as much as we can, especially with the housework but she is driving us all a bit bonkers and we are starting to get short tempered with her, which I feel terrible about but it is really draining.
She went for a memory test at the GP and got 30/30 a few months back so came home saying there is nothing wrong with her and she is fine. the strange thing is, her memory is actually pretty good and unless you have known her in the past you would probably just think that she was a bit vague and ditsy.
I sat her down yesterday and I explained my concerns and she said she would go to the GP again with me but she isn't happy about it and thinks im bullying her.
Sorry for the very jumbled post.. I'm just wondering if anyone else has seen these changes in a loved one and have they been diagnosed? I really don't know what further tests they will be able to do, do you think they would give her an MRI?
Ellie x

 

[canary]

Does this seem familiar?
https://www.theaftd.org/what-is-ftd/ftd-disorders/behavioral-variant-ftd-bvftd/

My OH can still pass the Mini Mental State Examination easily, even though he can now do very little for himself.
An MRI scan would be good, but the thing that would probably be most useful when the memory is still good, but dementia is suspected is neuropsychology testing - which is a bit like the MMSE, looks at lots of other functions of the brain and takes a couple of hours.

 

[El31]

Thanks for you response Canary, I’m so sorry about your OH, it’s such a cruel disease. I have always thought about FTD and I’m sure this is the type she has got. I will see what the GP says when we go for the appointment, she honestly thinks that nothing is wrong, she thinks we are all mad thinking there is which in a way I’m happy about because at least she is happy and not worried. I really don’t think she would believe the diagnosis if she got one.

 

[canary]

she honestly thinks that nothing is wrong

Thats very common - its called anosognosia.

 

[maryjoan]

Thanks for you response Canary, I’m so sorry about your OH, it’s such a cruel disease. I have always thought about FTD and I’m sure this is the type she has got. I will see what the GP says when we go for the appointment, she honestly thinks that nothing is wrong, she thinks we are all mad thinking there is which in a way I’m happy about because at least she is happy and not worried. I really don’t think she would believe the diagnosis if she got one.

You need to copy your original post into a letter and send it to your mother's doctor with the acknowledgement that you do not expect a reply because of patient confidentiality, but you will be making an appt to come and see Doc with Mum, for a chat.

This is exactly what I did- and it worked. Sending the letter first gave the Doc time to consider what I was saying, and things really started to move forward from that point.

My OH also has anosognosia and even now cannot acknowledge that he has severely depleted brain function.

Once you can get a diagnosis, it will open doors for you, for your Mum and Dad. You can apply for Attendance Allowance and get help from Social Services. Dad can get a Carers Assessment - you should then be able to get help with Mum of a practical nature. I do pretend it will be easy - but once a few things are in place it will make life more bearable for you all.

Also, of great importance to yourself and siblings is that with a diagnosis, all the beating yourselves up with the ' has she, hasn't she, has she, has't she' will stop - you will know for sure and will be able to take some sort of action.

Stay on here - everyone will help you.

 

[El31]

Thank you. I have already phoned GP on numerous occasions and he is aware but has said unless she agrees he can’t do anything which I understand.
I am actually a social worker and I work with adults and I know mum is not at the stage yet where they would be able to help; she just wouldn’t be eligible as her care needs are no way high enough, but they also have a lot of money and property so they would always be self funders. Dad has already got LPA sorted which we all share for both of them which is good.. I think for us to have a diagnosis will just put all our minds at rest.. not that I want her to have dementia but if she hasn’t i will be very surprised.
Thanks so much, I wil keep you updated x

 

[El31]

I have just got back from GP and mum is being sent for further more thorough blood tests and if they come back clear then she will be referred on to the memory clinic. I’m so glad the doctor took me seriously

 

[canary]

Good, Im glad someone is listening to you. I had a long period when OH passed the MMSE easily, denied having any problems (told the GP I was making it all up) and the GP believed every word he said. I only managed to get him assessed by a very tortuous pathway, although it is now very obvious that something is wrong.

When you go to the memory clinic make sure that you or your dad go with her as family observations are very important to the diagnosis. If you dont feel that you can say anything in front of her (it is very difficult) then a tip I picked up from here which works very well is to write a letter outlining all your concerns (maybe C&P your original post here) and surreptitiously hand the letter to the nurse so that the doctor can read it before your mum goes in.

Being a SW doesnt help much when its your own family, though, does it? I am a health professional and thought I was dementia trained. Its been a steep learning curve, though

 

[El31]

Yes completely agree, and it’s hard because I’m so aware of what is to come. In the doctors today I spoke about all my concerns that I listed here in my original post, and my mum laughed which was a good thing .. I’m actually happy that she is so cheerful about it all.. she said she wouldn’t be upset if she got a diagnosis and she would get on with it.
I am so sorry about your husband, it must be so so hard for you.. is he still living at home?

 

[canary]

Yes @El31 he is still at home. He is still very well orientated in the here and now (hence he still does well on the MMSE) and still has this vast array of knowledge - he just cant take this knowledge and apply it into real life. It is odd, because he can tell you what to do, but be totally unable to actually do it. He also has speech problems, mobility problems and hand tremour, but can still wash and dress himself, so its difficult to see what help is available, although Im going to try a day centre again this year. Last year he was offered a place, but he refused it on the grounds that everyone else was older (he was then 61 years old) and much worse than him

 

[El31]

It’s so hard because to everyone else he prob seems ok, but when you live with someone and see them day in and day out it’s very different.
Yes that’s the prob with day centres , they are full of older people.. one of my clients is 95 and said ‘I’m not going to a day centre, they are all old’.. made me chuckle.
Also check the age UK website.. not sure if they run similar groups in your area but they have one called ‘men in sheds’
Around us which I’m sure younger males go to. It’s so hard and I’m
Sorry you are going through all this. Do you feel like you have grieved already? I have been feeling like that with my mum and she hasn’t even been diagnosed yet x

 

[El31]

https://menssheds.org.uk/

 

[canary]

Yes, mens sheds is where Im hoping to persuade him to go.
I think Ive become numb from grief. I was also mums carer (though she never lived with me) - she had Alzheimers and died 18 months ago. I suddenly discovered that mum had mid-stage dementia at the same time that I was trying to get tests done on OH. Lots of balls in the air.

 

[AlisonE]

for the last few years I have seen my mum go through some very odd changes and I'm pretty sure it's dementia. She is 69 and her personality has completely changed.. She has no empathy for people and comes across really cold and rude..She no longer completes housework, she sleeps in an unmade bed most of the time and her bedroom is filthy, she washes up with cold water, no washing up liquid and using her hands which leaves food all on the plate so they always need re-washing..everyday is pretty much the same for her, she will get up about 5.30am, insist on going to the shops at around 7am and throughout the day she will go to the shop about 5 times, its like she gets the idea in her head and she has to go..she will then have a bath around 4pm and go to bed at 6pm.. She repeats herself constantly and only talks about a handful of things, she forgets words and sometimes what shes talking about mid conversation, She also almost chants to herself so will say things over and over like "I'm going out now, I'm going out now, I'm going out now". She is very vague also and will sometimes just stare in to space during a conversation, almost like she doesn't know how to answer. She is obessed with shopping and comes home with a new top every couple of days, she also has a crazy obsession with sweet foods when she used to be very healthy and hardly touch sweets.. She is obsessed with cornetto ice creams and also the drink schloer.. she had to rush out today because she only had 2 bottles left.
She forgets to take her bag out with her a lot of the time, occasionally locked herself out the house, she struggles with the sequencing of cooking now and will get flustered while cooking a roast, she also has awful table manners and will just pick food up with her hands and eat before anyone else has sat down.
My dad is 75 and is very fit and healthy and is doing an amazing job but she is driving him mad. I'm 32 and have 2 brothers aged 35 and 38 and we try and visit to help out as much as we can, especially with the housework but she is driving us all a bit bonkers and we are starting to get short tempered with her, which I feel terrible about but it is really draining.
She went for a memory test at the GP and got 30/30 a few months back so came home saying there is nothing wrong with her and she is fine. the strange thing is, her memory is actually pretty good and unless you have known her in the past you would probably just think that she was a bit vague and ditsy.
I sat her down yesterday and I explained my concerns and she said she would go to the GP again with me but she isn't happy about it and thinks im bullying her.
Sorry for the very jumbled post.. I'm just wondering if anyone else has seen these changes in a loved one and have they been diagnosed? I really don't know what further tests they will be able to do, do you think they would give her an MRI?
Ellie x

 

[AlisonE]

Have followed this thread with interest. I watched my Dad's dementia slowly develop and right to the end a lot of folk outside thought there was nothing wrong with him due to his fab social skills combined with my Mum covering up a lot for him. Now Mum is going down the same road, and having the diagnosis confirmed really helped as I thought I was going mad - her confabulation was brilliant, her memory not bad at all but with the GPCOG the informant questionnaire and also with other tests the informant questionnaire gave the answer - she is a different person from two years ago. Now I can cope with the confabulation much better as I know it is her illness not me, and that she is not doing it on purpose (she has always been a bit of a martyr and at times manipulative, so the confabulation seemed at times like a nastier extension of that. Now I can manage not to take it personally which really helps!) She also has anosognosia (refused to attend final Memory Clinic (I wish they would call it something else!) appt and refused to engage with psychological assessment) so I went myself, alone, as her attorney and that was it. It makes no difference to her really, as I look after her and have all the advance care planning in place, but it helps me no end to have her diagnosed as I can get help as well, and can be more patient when I hear the same story for the 35th time. I too am a health professional and work a lot with people with dementia and their families - I tell you it doesn't help when it is your own parent!!! (I just feel inadequate and that I should be able to cope!)

 

[El31]

Hi Alison,
Thanks so much for sharing your story. I am so sorry about your mum. Can you tell me what dementia she has been diagnosed with? I am losing patience daily with her, I do visit a lot and have Been here with my son most of the weekend.. I have had to re wash everything she has washed up today as she just runs water over it , no matter how many times I tell
Her she must use washing up liquid and the brush she just doesn’t retain the information, either that or she is just being difficult. She also has told me 10
Times in past hour what her and dad are having for lunch. Did your mum seem vague at all? I wil
Be talking to my mum and she just stares vacantly and then says ‘what?’ .. she agreed to an MRI which she paid for privately so I’m
Going with her tomorrow or Tuesday for results. Did your mum
Have a scan was it diagnosed through the memory tests?
Is your mum now having treatment? Is she accepting of support? Xx

 

[El31]

Sorry I have just seen she refused to engage with the assessment,
Is your dad still around

 

[canary]

Hi @El31
You might find this link helpful. I love Teepa Snow and the way she role plays. I watch it and think - Oh, thats so true!

 

[El31]

Thanks so much, I will give this a watch later x