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Please help!! Diagnose my mum

(25 Posts)
YesAnastasia Sat 11-Jan-20 16:50:32

She's 65. I'll just list her symptoms for now.
* Memory problems.
Long and short term (no cognitive
impairment)
* Confusion
* Depression/apathy/anxiety
* Loss of appetite/anorexia
* Skin problems. Had a scalp and skin infection that looked which has cleared somewhat but very dry skin has remained.

I might be forgetting some so will add when I remember.

She has had a brain scan but no dementia/Alzheimer's found.

She has always drank. For years she would probably drink a bottle of wine per night (possible more at the weekends) but since she has been poorly, she gets intoxicated very quickly so although she still drinks nightly, she actually drinks much less now than she used to.

GP and the memory clinic have just said it's the alcohol but I don't see how that can be. She has never drunk in the day but the symptoms are still there, maybe worse. If she had alcohol induced dementia, that would still be dementia and would show on the scan which they say it isn't!

She is getting worse by the day and by saying this is caused by her drinking half a bottle of wine a night - they are refusing to treat her for any of the other symptoms!!

I would really appreciate if any of you (don't care if you do or don't have a medical background) could offer some advice or suggestions. I am so worried that by the time we discover how to treat her, it will be too late.

OP’s posts: |
AwkwardPaws27 Sat 11-Jan-20 17:00:00

Vitamin deficiency - B1 and B6 deficiencies are common in people who have a history of heavy drinking. Not sure it would explain the skin issues, but potentially the other symptoms.

Seventytwoseventythree Sat 11-Jan-20 17:12:57

Doctor here (not a memory specialist though). You can have dementia with a normal brain scan. It can be useful to show shrinkage that we see in dementia but it’s not absolute. The main point of the scan is not to make the diagnosis but to rule out issues with the fluid pressure in the brain and brain tumours as causes of the memory issues. It’s also difficult to diagnose alcohol related dementia properly while someone is still drinking (because the effects of the alcohol will be in their system when the assessment is done). Agree with above poster about vitamin deficiencies, these are also often defined as alcohol related brain diseases (wernickes encephalopthy and korsakoff disease) in this country as they are most common in people who drink heavily. I’m afraid I agree with the memory clinic that alcohol is the most likely cause, She’s the right age and sex. I think they probably mean she has an early form of alcohol related dementia rather than “alcohol is the cause” meaning that she’s intoxicated so the fact she doesn’t drink in the day team is meaningless. Based on what you’ve said, if she has drunk those kinds of daily amounts of years then she has unfortunately drunk enough to hurt her brain. Stopping drinking is the most useful thing to do and she needs to be taking vitamin B to prevent the other issues that alcohol and poor diet can give the brain (ask your GP for thiamine supplements). I can see why you’re so worried, she’s very young. I’m glad she’s seen the memory clinic and had the scan, those are the two key things I would want in a young person in order to rule out something reversible.

Seventytwoseventythree Sat 11-Jan-20 17:17:02

See www.alzheimers.org.uk/about-dementia/types-dementia/arbd-diagnosis

And the skin issues are unlikely to be related (though may be linked to a poor diet) would ask the GP to check iron, folate and B12 levels and would get this seen and treated as a separate issue

TroysMammy Sat 11-Jan-20 17:19:50

Korsakoff syndrome?

AmazingGreats Sat 11-Jan-20 17:25:13

Sounds like korsakoffs (wet brain)

How is her liver?

AnnaMagnani Sat 11-Jan-20 17:34:21

It does sound very much like alcohol related memory damage like Korsakoffs.

Brain scans are part of the diagnosis of dementia but not all of the diagnosis - they help identify particular types of dementia but the history and cognitive tests done at memory clinic are just as important, if not more important than the scans.

Apathy is a big part of many memory disorders - you can't remember what it was you wanted to do so you never get motivated.

Has she been given vitamin supplements?

YesAnastasia Sat 11-Jan-20 21:13:53

She does take b vits and supplements. She has also (recently) been taking a supplement called Phenibut we buy online which is somewhat curbing her anxiety.

The GP and the memory clinic are adamant that she has no form of dementia, alcohol induced or otherwise. Because for me, that would be the only way it would make sense. Drinking 3 glasses of wine a night when otherwise healthy does not cause these symptoms while intoxicated or the day after when the alcohol has left the system.

If that's the case and she does have alcohol induced dementia, what is the treatment? Prognosis? We have been given no guidance or help at all. I am already a carer and do not have the capacity to care for her the way she needs.

She is also not eating. At all some days. This is not being treated either. The word anorexia is on her doctor's notes - when I saw that, I hadn't considered it neither had it been mentioned.

I would like to go private. Who do we choose to go to see? Are there private memory specialists/consultants who investigate (then TREAT!!) the cause of memory problems.

OP’s posts: |
YesAnastasia Sat 11-Jan-20 21:17:24

I'm sorry, I meant to thank you all for replying! I really appreciate it. I knew there would be someone on here who would listen 💛

OP’s posts: |
DonKeyshot Sun 12-Jan-20 02:27:11

Have you looked at the possible side effects of Phenibut? It wouldn't be my drug of choice for your dm's current symptoms.

In common with many others who live in northern climates, It's highly likely that your dm doesn't get outdoors enough to convert sunshine into vitamin d.

A lack of vitamin d can result in what, from my own experience, I can only term 'brain fog' and I suggest you get your dm started on 4000iu/250mcg Vitamin D3 and K2 tablets as soon as possible.

If she is suffering from a vit d deficiency you can expect to see an improvement within 2-3 weeks of her taking a supplement, if not earlier.

DonKeyshot Sun 12-Jan-20 02:34:59

Even with low level depression/confusion, your dm may find it too much of an effort to cook for one.

Can you stock her freezer with supply of ready meals that she can easily reheat in the oven or microwave?

I strongly recommend that you go down the Vitamin D supplement route first but, if you haven't already done so, also arrange for your dm's GP to carry out blood tests including one for liver function before you start splashing the cash on private consultants.

Gingernaut Sun 12-Jan-20 02:44:51

Taking vitamins when deficient and then drinking the alcohol which is causing the deficiencies is not going to help.

She has to stop drinking.

It does sound like alcoholic dementia.

Self neglect, anorexia, confusion etc are all common signs of dementia.

Phenibut is a central nervous system depressant (like alcohol) which can also cause loss of appetite, nausea, confusion, lack of balance and coordination and hangover like symptoms.

She needs to stop taking that as well.

The alcohol is probably compounding any side effects.

AwkwardPaws27 Sun 12-Jan-20 08:58:48

She is also not eating. At all some days. This is not being treated either. The word anorexia is on her doctor's notes - when I saw that, I hadn't considered it neither had it been mentioned.

If I've understood this comment correctly, I think you are wondering if there is an underlying eating disorder the doctor hasn't mentioned to you?
To clarify, Anorexia (in medical terminology) means loss of appetite - the eating disorder is Anorexia Nervosa.

I hadn't heard of Phenibut before but a quick look at the Wikipedia page shows it should not be taken with alcohol (this drug is a CNS depressant so may amplify and extend the effects of alcohol).
It would be safer to have a prescribed anxiety medication under medical supervision.

As per a previous poster, improving your mum's nutritional intake may help. Good quality, individual ready meals is a good suggestion; ideally paired with stopping or decreasing alcohol intake.
Heavy drinking causes decreased absorption of nutrients - so taking a vitamin supplement or eating more healthily will have a more limited effect than in a non-drinker.

YesAnastasia Sun 12-Jan-20 15:11:41

She has only been taking Phenibut for the last few months, it isn't causing any of her symptoms. It was all I could think of to ease her symptoms because her GP isn't treating her. I considered cannabis too - might still opt for that. I can't leave her feeling like this with no relief. So far, she has been unable to tolerate any of the antidepressants she has tried. I asked for Bupropion (sp?) because that works on dopamine rather than seratonin and would maybe have worked for her but her GP refused (might've stopped her smoking too but...) I forgot to mention she smokes. A lot. She isn't cleaning herself (or her house) often at all so she doesn't smell great. She just sits and does puzzles all day. She isn't interested in her grandchildren at all and tells everyone she is lonely but doesn't want to see her family.

She is not drinking heavily at the moment. I don't even feel like she ever drank enough to cause Korsakoff, especially now I have researched it (thanks for the link). And her liver function test was fine.

She does take vit D and b. Should I get her stronger ones? Any particular brand better than others?

Sadly, it isn't cooking that is an issue. If it would help, I'd cook for her every night. She just won't eat. We take her food, she goes to restaurants, she has convenience food aplenty she just says 'I don't fancy it'. Of course I try to insist but she gets upset. It's infuriating. I have shakes delivered to her house, they stay unopened 🤷

OP’s posts: |
YesAnastasia Sun 12-Jan-20 15:15:25

I see awkwardpaws thanks for clearing that up. Even so, it might be anorexia Nervosa. She isn't concerned about weight though so can it still be considered as an eating disorder? And if so, why won't she eat? What's the psychology behind it if it isn't control or being thin??

OP’s posts: |
WonderTree Sun 12-Jan-20 15:16:11

Cumulative damage from all the drinking. A bottle of wine a night for years? That's a hell of a lot. And she's still drinking. Sorry.

bigchris Sun 12-Jan-20 15:19:15

With all due respect stop trying to medicate her yourself with drugs

Get her a good doctor

We can't diagnose her !

YesAnastasia Sun 12-Jan-20 15:21:49

Yeah, of course I do know it's a lot. I'm not in denial. If that's what it is, I need someone to tell me it is and treat her acvordingly. Her GP says she doesn't have dementia, alcohol induced or otherwise. She says it's the current drinking causing the problem yet she isn't drinking heavily at the moment.

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AttilaTheMeerkat Sun 12-Jan-20 15:23:37

YesAnastasia

Your mother does not want your help or support - all you are doing now is tying yourself up in knots by trying to help your alcoholic mother. You're just enabling her and what you've been trying here has not worked. All such enabling does is giving you a false sense of control. No point either in going private; she is not willing to address her alcoholism at all and besides which who is going to pay for this?.

The doctors are likely not wrong here; her long term alcoholism has and is affecting her cognition. Short term memory loss in particular is one of many problems associated with long term alcoholism.

YesAnastasia Sun 12-Jan-20 15:24:30

With all due respect bigchris I am trying.

Your comment wasn't helpful, kind or necessary.

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AttilaTheMeerkat Sun 12-Jan-20 15:25:52

Why is it down to you to treat your mother?. Who gave you that role, you?. You're not helping and she does not want your help or support. All you will end up doing is making your own self ill and broke because she is really dragging you now down with her.

You'd be far better off trying to help your own self instead; attending Al-anon meetings would be a good start.

YesAnastasia Sun 12-Jan-20 15:39:23

Attila you have replied to me before, you have truth seeing super powers that are wasted on Mumsnet. I definitely have mother issues and looking after her is doubly difficult considering she never looked after me (emotionally). And no, she isn't prepared to help herself.
Nevertheless, I must keep trying, just in case there is something I can do to help. When she dies, I'll still be here and I will need to know I did all I could for her.

Did you mean for me to go to Al anon?

OP’s posts: |
AttilaTheMeerkat Sun 12-Jan-20 15:52:35

YesAnastasia

I remember replying to you before now as well re your mother.

You've already done more than enough for her already and you need to let this sense of obligation to her go before this really does destroy you. She was not a ideal example of a parent to you when you were growing up and you are really under no obligation (apart from the one you impose on your own self like many adult children of alcoholics do) to care for her now. She is not taking care of her own self and her health problems now are both acute and mounting steadily.

Who is taking care of you here?. You're very much the adult child of an alcoholic and codependent to boot. You will make yourself ill if you carry on in such a vein and she still won't recover, say thanks or be the kindly mother figure you still want her to be. You can only look after your own self ultimately, she does not want to be helped. You cannot keep acting as the rescuer and or saviour here; neither approach works.

What you have tried to date has not worked because SHE is the only person who can help her. You're her daughter; you are too close to her and besides which she does not want your help or support here.

Seek support for your own self and consider going to Al-anon meetings. You will thank you own self for putting that investment into you.

YesAnastasia Sun 12-Jan-20 17:56:29

I love everything you said, thank you. But as a neglected child, you know I won't be able to stop trying to help (ok, save...)

The problem with this situation is that I am not convinced that alcohol is the problem here. I really feel there is something that the doctor has wrong. Even if that is alcohol induced dementia, I need to know about it. Otherwise I WILL be stuck caring for her because she will have no treatment or diagnosis and therefore will get worse with no help from social services/community nurses. I have autistic children so am already a carer I just can't do it.

I will change GP or go private. I have found a private memory clinic so will ring them tomorrow.

OP’s posts: |
RoLaren Sun 12-Jan-20 20:15:51

AA is for the alcoholic, Al Anon is for the spouse/child/parent of the addict. You should go, it'll save you sanity, if not your life. One other thing, all this effort being expended on someone who doesn't seem to want it, wouldn't that energy/time be better spent on your children?

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