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DOes this sound like dementia, or something else?

(27 Posts)
AmberLin Wed 17-May-17 00:03:30

My DM is only 63 years old. Last March she left her job of 30 years after it becoming too stressful for her and her not getting fully along with her boss. She was happy to finish. Not long before this, her weight had already started decreasing rapidly and has continued to do so. She is now quite frail looking, whereas she was a very round size 16 in my wedding photos of 2013.

The confused episodes started around the same time, possibly even before.

She is constantly looking for her phone and keys. She doesn't know how to use phone, never responds to texts anymore so people have stopped texting her. We tried and tried to teach her how to fasten our toddler into a car seat, it was impossible so we just gave up. That was a while ago and she has since given up on driving. Her driving became shocking really - stopping to give way in the middle of busy roundabouts, moving lanes on the motorway without signalling or realising she was swaying from lane to lane. It was terrifying.

She has become so quite and reserved - always been a quiet shy person though but she has retreated so much. When I bring my DS to their house, she shows very little interest in him and talks to him like he is a grown up sometimes (he is 2.5). Her days consist of getting up around 9, having a bath when she gets round to it, then sitting at home waiting for my dad to finish work. She has stopped cooking and only does very occassional housework - ie washing dishes and leaving them to dry. She doesn't touch the hoover, dishwasher or clean the fridge. My dad is still working full time, he is doing everything for her right now.

She seems to get into accidents frequently. Falling over, tripping up, walking into things.

She makes strange statements that I can't figure out - here is an example. She was at my house, it was around 7pm and we were about to say goodbye and I was about to take DS up for a bath. She started asking me if I would fix him in the car seat as she wouldnt be able to do it. I explained to her that DS was staying her and about to have a bath. She took a minute to understand and couldnt understand why she had assumed he was going home with her. This is happening more and more frequently now.

It's taken a while for them to go to see a doctor. They at first said she was fine!!! Then a second visit with my aunt and dad together, my dear aunt politely explained to GP that something wasn't right and she has been referred for a chest x-ray and MRI brain scan. Her chest x-ray is on Thursday.

I'm starting to think this may not even be dementia-related at all. My aunt has said they may suspect a brain tumour of some kind. Has anyone had any experience with this. Are these symptoms typical for someone with early dementia? Or a tumour?

We are so worried about her. She is too young for all this. I should add that she hasn't had a particularly healthy life - she's never done a days exercise in her life, hates walking, doesnt eat very well, and drinks every day. I think the booze gives her some confidence, which she doesnt normally have.

any insight would be appreciated. Thanks for reading.

YNK Wed 17-May-17 00:13:50

Make sure she has blood tests for B12, folate, ferritin, fbc and full thyroid panel.

AmberLin Wed 17-May-17 00:19:47

Thanks for that YNK. I forgot to mention she has lost her sense of smell. She can't smell my dads huge wisteria at their patio doors - my dad mentioned this the other day. She has had some blood tests done, as far as I know they came back normal, but I will ask her tomorrow about this as she has quite a few of those symptoms on the list.

YesEinsteinsMumDid Wed 17-May-17 00:33:56

Has she been treated with a lot of steroids recently? My mum gives the impression of demention when she has a high dose of steroid inhalers. Which is an issue as she has really bad asthma.

bear28 Wed 17-May-17 00:41:26

My gran had the same symptoms. And she was treated for dementia for months before being diagnosed with a cancerous brain tumour. She found out she had a tumour on her lung about a year before the symptoms started and didn't want it treated or to talk about it. Unfortunately with an untreated Tumour elsewhere in the body... it can cause a tumour in the brain. It was her tumour in the brain that was causing all of her confusion, memory, everything. We were lucky enough to be with her in the hospice when she passed but I would advise getting any/all appropriate tests done. Xx

AmberLin Wed 17-May-17 09:18:47

How old was she when she was diagnosed bear? And what kind of treatment was she on for dementia? And how long did she have from diagnosis to her passing? Thanks for replying.

YesEinstein - no steroids, no, but thanks for replying.

Deemail Wed 17-May-17 09:24:38

My father had similar but ended up been fluid on the brain. Treatment involved having a shunt inserted and he hasn't looked back. Regained weight, memory better and more alert.
It could be anything, my point is don't just write it off as dementia as had initially happened with father.

SouthPole Wed 17-May-17 09:29:01

This sounds like my friend's father who it turned out to have CJD.

Once everything else was discounted (stroke, dementia, tumour) then they moved to CJD.

When this was happening I had a feeling it was CJD after knowing someone in Ireland who also died of it. But I kept schtum until the diagnosis.

I'm sorry about what you're all going through OP.

BTW from the first time my friend's DF got lost on the way home from his work of 40 years to his peaceful death it was 6 weeks. There's also a lot of support from the CJD society (or whatever their proper name is) if you wanted it.

I hope you find out what's happening.

ImperialBlether Wed 17-May-17 09:31:31

It doesn't really sound like dementia, does it? That wouldn't cause the sense of smell to go, would it? I'm really glad that she's going to be tested now - is she happy with that?

When you say she drinks every day, is she a problem drinker in terms of her behaviour? How much does she drink? Does she still remember to drink every day now?

YNK Wed 17-May-17 09:34:13

Losing her sense of smell is a huge flag for B12 deficiency.
Mine was gone for 2y before treatment. It has come back now.
It's a neurological symptom indicating a dysfunction of the autonomic nervous system.

Apart from the fbc the ones I posted are not routine tests. They have to be specifically requested!
Please don't delay - B12d is a potentially fatal autoimmune condition that prevents absorption from food.
The good news is your DM does not have dementia and her symptoms can be reversed.

Always obtain blood results from the doctor. Admin in this FB group will help you understand them.

halcyondays Wed 17-May-17 09:44:22

Do you know if they have considered Parkinson's? This could be a possible cause of falling, memory loss and even losing sense of smell.
My dad has Parkinson's but it took quite a while for him to be diagnosed.

Does she drink very heavily every day, if so this can cause memory problems?

AmberLin Wed 17-May-17 09:44:28

She tends to buy either wine or beer every day from our local off license, and drink it fully every night. My dad tries to stop her but she gets all defensive about it. Example, we were watching football at my uncles house last week, it was the Spurs final match so a long one, my dad and dh were drinking one beer. My mum literally went through about 3 cans of beer and was asking for a 4th, my dad basically stopped her and she sat there in silence for the remainder of the show (it was some special send off game that had a load of waffle at the end of it). She does act and talk a bit inappropriate after drinks, and has caused offense a number of times. She will drink whatever is in the house. We bought a good whisky for my dad for his birthday recently which he literally has to hide in the garage - if she knows about it, it will be gone within a day or two. I don't honestly believe she can taste the difference between what wines she is drinking at dinner either, she will often take my dads wine during sunday lunch or my dh's and won't notice what she is doing, even though they are drinking something different. She has mixed up tea and coffee before too. We've been telling her for years to cut back her drinking with no success, even after her sister (the same aunt who is helping us now) basically got told her liver was permanently ruined and she no longer touches alcohol and has turned her life around. I am going to look into that CJD now. The MRI is the thing that is going to take the longest, they told her to expect about 10 weeks on the waiting list, that was last week. We assumed dementia because we honestly didn't know what else could be causing it, but now after talking to a few people and digging around, it seems there could be a number of causes. I'm calling over to see her today, hopefully her chest x ray results won't take too long to come through. Thanks all for responding.

SouthPole Wed 17-May-17 09:47:35

Is the doc aware of her drinking history, OP? The real story.

elephantscansing Wed 17-May-17 09:49:48

Some sort of dementia linked to her heavy drinking? I hope you get some answers soon. But the GP needs to know about her alcohol intake.

Whywonttheyletmeusemyusername Wed 17-May-17 09:53:49

A close family member displayed the exact same symptoms you describe. Unfortunately it was a grade 4 brain tumour - she died 10 months after her diagnosis. I sincerely hope this isn't what your DM has, but only you and family members know how she is "normally" - if she is acting completely out of character, you will need to convey this to the medical staff, and really push for tests.

AmberLin Wed 17-May-17 10:00:46

I think the doctor does know, she has never really cut down though. We've all tried to tell her to cut back. We used to think she did it to cope with the stress of her job, but she has continued to do it even since retiring. It has always been out of hand - I remember when I was pregnant with my DS. DH picked her up from the airport (she had flown up to Scotland where we were living at the time) and she was tipsy after 2 double gin and tonics on the plane (a very quick flight from manchester to aberdeen!) and had even brought a bottle of gin to the house she had bought in the airport I assume. Both DH were in shock at how much she was putting away, this was supposed to be a visit to help me get prepared for DS1 arriving but she was acting like a 20 year old going to Magaluf for the first time. The family (I have 2 brothers, both live down south) have become desensitised to her drinking, I've even heard uncles/aunts/cousins make comments on "xxx's drinking" like it's common knowledge she drinks far too much and takes things too far.

AmberLin Wed 17-May-17 10:08:09

Whywonttheyletmeusemyusername Wed 17-May-17 09:53:49

- thats interesting, how similar are we talking? The rapid onset, weight loss, bad driving, silly outbursts?

Whywonttheyletmeusemyusername Wed 17-May-17 10:15:51

Yes, exactly this. Things like reversing backwards down the road 'towards' oncoming traffic. Leaving the oven on etc. A complete personality change also - from one extreme (placid) to another (vicious)

YNK Wed 17-May-17 10:41:56

I'm even more convinced its B12d now but maybe not autoimmune.

Alcohol depletes B12.
When alcoholics are admitted for treatment it used to be routine to give them a course of 6 B12 injections over a 2 week period!
Please discuss this with your doctor!

MakingMerry Wed 17-May-17 18:45:16

The loss of sense of smell, is one symptom of Alzheimer's, and a lot of what you have described: loss of motivation, forgetting how to use technology, outbursts/disinhibition/ leaving appliances on, making odd leaps of thought, is also consistent with what I know of that disease. However it's diagnosed by a process of elimination, when other tests come back okay, and it can take months or years to get a diagnosis because ongoing decline is one symptom - so declining performance on mental ability tests year on year would support a diagnosis.

It does sound as though the drinking may also be playing into her symptoms. I hope you find some answers soon.

Out2pasture Wed 17-May-17 21:27:42

Look up Werneki-Korsakoff syndrome
It's a form of dementia associated with alcohol dependency.
The MRI will be helpful at providing a diagnosis.

mrwhitesfly Wed 17-May-17 21:36:29

Sorry to hear about this, it must be very worrying. Apart from the loss of smell the symptoms are really similar to those of my mum who was diagnosed with alzheimers a few years ago at age 64.

AmberLin Thu 18-May-17 13:25:54

my dad told GP today about my mothers loss of sense of smell - GP replied, oh it's probably because she had a cold or something. This is the second time the same GP has fobbed off our concerns... she's having the chest x-ray today. Hope it won't be long for this MRI... thanks all.

CiderwithBuda Thu 18-May-17 13:42:59

You will have to push for proper diagnosis. Write down all the symptoms. Ask for a referral to a neurologist now as it could take ages to come through. Ask for the blood tests mentioned up thread.

It's really hard. My mum had Lewy Bodies dementia but we had to diagnose it ourselves. Doctors weren't interested.

SpongeBobJudgeyPants Thu 18-May-17 13:57:07

Like Out, I thought Korsakoff syndrome also link

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