Worried about Mum

[Mum1945]

Hello

New to the forum and after some advice after a seriously upsetting incident with my mum yesterday.

For the last couple of years, we've noticed that things haven't exactly been 'right' with her- forgetting common words, not being able to follow conversations, losing things, great concern over money, confusion over dates etc.

On top of this, she's drinking too much wine. A glass or two at night has turned into a bottle or two over the course of the day.

I think there were two significant episodes of stress that brought about a change in her- having a breast removed due to cancer (she bounced back almost too quickly) and her 94 year old (rather mean) mother moving to a care home close to her and mum feeling more stress/ pressure to look after her.

However, any vocalisation of our concerns were met with deaf ears and a significant amount of anger about how wrong we are and how all their friends think she's great!

Even her partner wouldn't admit there was a problem at first but is finding it hard to deal with her mood swings and increasing anger towards him.

And, whilst we've been very concerned and saddened, we've coped. But something happened this weekend that's taken her to another level and I'd love to know from others how 'normal' this is.

She came to stay at my house in London (she lives in Norfolk) and my sister came to stay and on Saturday evening and Sunday lunch, we got together with my dad/ her first husband- they are still friendly despite divorcing over 30 years ago.

We mostly had a lovely time- except for us all trying after lunch on the Sunday to persuade her to see a doctor- which she didn't take kindly too and she went straight to bed and sleep around 5pm. She even drank less than normal, as we had some control.

On Monday morning I was due to take her to the station for a 9am train and I could tell she was getting a bit concerned about the arrangements (she's always been a nervous traveller), so I wrote her a note explaining that I'd set my alarm for 6.30 and wake her up, and we'd both get a taxi together at 7.30 with plenty of time for her 9am train.

I was expecting her to wake before 6.30 but what I wasn't prepared for was a 3am wake up with her fully dressed, panicking about missing the train. I told her to go back to sleep but she came back in at 5am and couldn't understand the time or plans. I got up at this point and decided my only option was to go with it and treat her almost as a child. And whilst that helped, the whole day she couldn't understand anything- why we were traveling, where her partner was, she even ended up calling me by her partner's daughters name for most of the afternoon, and talking about another person in the house who wasn't there!

I got her partner onside and we booked her a doctors appointment for 4pm and decided that we'd pretend it was for me but get her in the room too and flip it over to her. However, it transpired that she'd drunk at least 3/4 bottle of wine from 11am and by 4pm was dead to the world.

We tried to wake her but to no avail and so I went to speak to the doctor instead. (He's coming for a house visit this afternoon which her partner and I are very concerned about because she will be so angry- although luckily the doctor is happy to go along with a story of my elder sister calling him to book it for both my mum and her partner as I said to her that I was concerned about them both).

Aside from us waking her to try and fail to make her have some dinner with us (it didn't work, she thought it was breakfast and stormed around the house in her knickers telling us to be quiet) she slept for 15 hours until 6am this morning.

She's a little better today- she at least recognises me but still quite agitated. She was very keen to know when I was leaving as they have friends coming Thursday! (So I have gone home now rather than wait until after the doctor visits as planned.) And she's still muddled over plans, dates, money etc.

So my questions, and apology for the essay to get here:
- Do these seem like normal signs of Alzheimer's/ dementia to others?
- Is that very rapid deterioration normal? And do we just need to control it by her not travelling/ getting her into a routine?
- I'm so concerned about her poor partner who is in his mid-80s and not in the best health himself. What support can I get for him?
- What should I do if she has another really bad episode?

I know the doctor is coming round but chatting yesterday he seemed to focus most on the drinking, which definitely is an issue but perhaps not the primary one.

And I'm so sad, she's been an amazing mum and I sort of feel like I've lost her.

Any help is hugely appreciated, thank you x

 

[Cat27]

Welcome to TP

I’m glad the GP is coming out. I’d write down everything that’s been going on & hand to the GP as he arrives.

 

[Shedrech]

hello @Mum1945
a warm welcome from me too
no wonder you are worried about your mum, if dementia isn't at play, something is not right
there are other causes for dementia-like symptoms eg vitamin B12 deficiency, stress, depression ... so it definitely is worth her GP checking her over
any chance you can e-mail the GP or your mum's partner a copy of your post here as it clearly describes the behaviour you are concerned about - and maybe phone at the time of the appointment to speak to the GP
although drinking that amount of wine will have an effect, as during your mum's visit she didn't drink so much, it appears to be a contributory factor, indeed a symptom, rather than the whole cause
actually, I know your mum sent you away, but is there any chance you could get to be there for the appointment - it's pretty usual for partner's to play down concerns and not want to give a full picture of what is going on - and the person themselves can put on 'hostess mode' (a term we use on TP) ie they make a massive effort to gather themselves together and can fool even medics into thinking that nothing is wrong, they are their usual selves; then, of course, the person falls apart later and is back to the behaviour that was causing concern, but no-one but the person who lives with them sees this - it's actually very helpful that you yourself saw exactly how your mum was during her visit, as sometimes the person can fool family into thinking their partner is telling fibs
you are right that taking someone with dementia out of their usual routines and environment can massively increase their confusion - it does sound as though your mum is displaying much changed behaviour whilst at home, though, and could do with some support - and yes, behaviour can change slowly or rapidly; for each person the path is individual
might you suggest to her partner that he keep some of the empty wine bottles (especially if they are screw top) and decant into them some low alcohol/non-alcoholic wine so that she can drink (looks as though it's a habit, rather than enjoying the taste/effect) but she won't be hit by the alcohol; hopefully she won't notice - that way you can also see whether the much lower intake of alcohol makes any difference to how she is
I hope the GP understands and helps
let us know how the appointment goes
best wishes

 

[Mum1945]

Thank you Shedrech. I am back in London now and the appointment is happening as I type- I'm still waiting for the update.

I spoke to the doctor at length yesterday so he should have a pretty good idea of what's going on.

She is a fair bit better today but yesterday was crazy. I've never witnessed anyone in a state like that before. Probably a sign of what's to come.

I appreciate your help and will post an update once I've heard.

I forgot to say in my last post that she had lost so much weight recently because she's not eating properly, so a vitamin deficiency is quite plausible.

Of course if we mention it to her, she's always been thin and it's only fat people being jealous!

If it wasn't so heartbreaking, I'd laugh x

 

[Mum1945]

Ps I think that's a brilliant idea about the wine. I will definitely suggest that to him x

 

[utopian]

Hi Mum1945,

Your mum sounds very similar to mine so felt compelled to reply. My mum was diagnosed early last year (she was 68), but the signs had been showing for a little longer than was only really apparent in retrospect.

It does sound like a form of dementia / Alzheimers, but you will certainly need professional assessment and an MRI to determine for sure. I organised an MRI for my mum in the early stages to find out the causes of her "memory loss", as she was adamant and got quite aggressive when anyone suggested she had dementia. For that age group, dementia has been seen as something very much to be ashamed of and was a dirty word, so I've learnt that while in this stage of denial, I'd always talked to her about "memory loss" and coaxed her into getting tests.

A year and a bit on and she's had numerous confirmed diagnosis and memory clinic visits. She's no longer in denial and to be honest, that can make it harder as she became more emotional because of the realisation.

Mum used to live overseas but I had to bring her back to look after her more after the diagnosis, but she's living in an independent living complex with carers visiting daily to assist where required.

Definitely recommend getting an MRI if possible to allay all doubt and realise that the carer (you and the family) need support too as it's a difficult road, but there are a lot of us out there that have similar situations and experiences so do the best for your mum, yourself and your family's health as it doesn't just affect the person with the illness.

Hope all goes well with the GP.

utopian.

 

[utopian]

Hi Mum1945,

To add to my last post, my mum was consuming a lot of wine too and that certainly wasn't helping the situation. She's given it in moderation these days and is a lot better with it anyway after having accepted the diagnosis. In the early days, I used to buy decent alcohol free wine and she was none-the-wiser, which reduced the aggression greatly and the stress of everyone around her.

utopian.

 

[Mum1945]

Thank you utopian. I am so sorry to hear about your mum but pleased for you that shes getting some care.

Apparently mine reacted very badly to the doctor showing up. She said she'd never seen him before and scowled at her partner after he introduced himself, and that he couldn't get anywhere near her. (I heard this from a follow uk call with the doctor.)

I also recieved this email from her partner who obviously can't call if she's in the house -
"What a fiasco! His visit has really ‘put the cat amongst the pigeons’ – I am now ‘persona non grata’ completely. A horrendous row and being told to get out (again) I was afraid this would happen so I’m afraid that the idea has backfired completely. She just will not understand that we all want to help her – but all it has achieved is that I am the bogey man and not welcome here. Oh God what a bloody mess."

My sister called the house to explain to her that it was her who'd arranged the doctor and not her partner and she screamed down the phone at her that she was a "disgrace and that she is no longer her daughter". Her partner (who answered) also said that she'd just thrown a glass of wine at him.

She's always been head strong very proud, and I didn't think this would be easy but after yesterday I felt that we couldn't ignore it any more.

We've tried linking it to memory loss, weight loss, drinking etc, but none of it resonates with her. I'm not sure if it's genuine denial or saving face or what.

Both my sister and I are going to write her a letter but I sort of think that it's going to be something major that brings this to a head. I just hope that it's not physical injury to herself, her partner, or anyone else

I do think the wine idea is an excellent one and I'll see how that goes. And I guess we'll keep on trying.

Best of luck with your mums and thank you for taking the time to reply x

 

[Cat27]

Her reaction is actually very common.

You may find this thread interesting https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[utopian]

Hi Mum1945,

Sad to hear about the current mess, but I'm sure things will calm down, particularly if everyone is as normal with her as possible. As Cat27 said, I'm sure it's a normal reaction.

My mum was very head strong and that's putting it mildly. She was (a little less now) extremely stubborn, aggressive and violent in the beginning and things were at there worst when another family member called a family intervention. She had a history of it anyway and the dementia just exaggerated it. Sitting her down with the concerned family appearing to her as though everyone was "ganging up" on her didn't work and turned very ugly, but she forgot the whole episode within a week or so.

Hopefully your mum will forget the mess that it appears now and calm down, but it doesn't help her partner undoubtedly in the mean time. Only advice (from an unqualified son who's experienced similar) is to wait it out and try and be as normal as possible and try a different tact in a week or so. It's a difficult, stressful and frustrating time and you have my sympathy.

Telling your mum or her partner that your local doctors have requested her visit for a "general health check up" may perhaps work and let the professionals start the ball rolling. Ideally the Doctor is given a heads up about the situation and can work around it as I'm sure they're aware of such situations.

No one likes to be told they have something like that wrong with them, so it will take patience and time.

Bear in mind things like bad water infections can cause such behaviour (hallucinations, memory loss, confusion) as we experienced with my Grandma, so it's definitely worth getting professional advice when you can.

Utopian.

 

[utopian]

Thanks for the link Cat27. I wish I'd known about these when mum was first diagnosed as a lot of it I've learnt through talking to professional carers and experience since. Definitely good guidelines.

 

[Amy in the US]

Hello Mum1945, and welcome to Talking Point. I'm very sorry to hear about this situation with your mother and that you needed to find your way here.

I haven't read all the replies carefully, so my apologies if I repeat something that has already been suggested.

Certainly what you describe does sound as if your mother could have some sort of neurological impairment. Of course nobody can diagnose her over the Internet but I think your instincts that "something isn't right" are sound and it's very smart to get her checked out.

Please note, not a doctor or medical professional, so take all advice as worth what you paid for it!

There are different types of dementia and they can present differently, even from person to person. Dementia isn't just about memory loss; executive functioning and visual spacial awareness and all sorts of other issues can be part of the disease. Sometimes in the earlier stages changes can be very subtle indeed, and easily masked or hidden.

There are other medical issues or physical problems that can cause symptoms like dementia, including but not limited to, stress, thyroid issues, some vitamin deficiencies, hydrocephalus, the list goes on. You can have one or more of these issues with dementia. So it is always smart to get things checked out.

Also, if someone does have dementia, there are issues that can make it worse, or cause sudden and sharp changes in behaviour and/or personality. This includes dehydration, constipation, infections, general illness, and delirium (an acute confusional state), as well as blood pressure issues, uncontrolled blood sugars in a diabetic, medication issues (over or under medicating, and also drug interactions, and some drugs don't mix well with some types of dementia), and, yes, alcohol for some people.

The most common infections for PWDs (persons with dementia) include urinary tract infections (UTIs) and pulmonary infections. Whenever a PWD starts behaving in an odd way, it's best to rule out a UTI, as you would not believe the havoc they can wreak on older persons in general and PWDs in particular.

From what you describe, I almost wonder about delirium. This can be brought on by medication issues, underlying medical issues (like infection), a stay in a hospital, and so on. The only "cure" for delirium is to treat any underlying cause, and then give it time.

So those are all things to think about and discuss with the GP.

I'd keep a written record of everything you've told us, plus any other issues you've noticed, possibly ask her partner to do the same, and provide it all to the GP. I would not discuss any of that in front of your mother; you can fax or email or mail or drop off any notes you have for the GP, ahead of time or separately. Keep copies for yourselves.

Sadly, a part of dementia is often an inability to understand or comprehend that there is anything wrong. The fancy medical term is anosognosia. The brain is damaged in such a way that it cannot grasp there is a problem. I know that sounds nuts, but it's real, and it's common with dementia patients. So some of what you are encountering with your mum may be that she can't understand there is a problem. It could certainly also be down to stubbornness and/or a strong personality; those don't help! Just know that she may not deliberately be refusing to accept reality, she may be unable to.

Dementia is hard and I know when my mother was diagnosed, I found it terribly difficult to wrap my head around and a huge learning curve. I had known for years there was something wrong with my mum, but not what it was. Getting the diagnosis was a shock and a relief all at once, if that makes any sense.

When you have time and the inclination, you will find very good information on the Alzheimer Society's website. This is a good place to start: https://www.alzheimers.org.uk/info/20007/types_of_dementia/1/what_is_dementia

Again, apologies if I've repeated others' advice and information.

Very best wishes to you and your family.

 

[Amy in the US]

Oops, I forgot a point.

I wanted to say that it is very common for a person with dementia to "blame" and become angered with, the people who are closest who are only trying to help. It seems to be one of those universal dementia issues. I know that doesn't help in any practical way, but just to mention it so you and your sister and your mum's partner know you're not alone.

 

[Mum1945]

Thank you so much utopian, army in the us and cat27- it makes me want to cry (again) that there are people willing to give up their time to help others.

I'll definitely check out those links and also keep on trying to get her to realise there's a problem.

Delirium and anosognsia sounds spot on, and a Vitamin deficiency or even a urinary infection are quite possible, but impossible to diagnose if she won't see a doctor.

But we won't give up!

Thank you again. What a steep and unpleasant learning curve to have to deal with - for all of us x

 

[Amy in the US]

I didn't want to hijack over on the compassionate communication thread. Lots of good information there, and I was going to post you some links to compassionate communication.

You mentioned feeling guilty and upset that the doctor's appointment went so poorly, and feeling unhappy that there might be something that could help your mum, but she won't accept help right now.

I do hear what you are saying, but here on TP we have some things we say about guilt and feeling guilty. We call it "the Guilt Monster," and advise that when it shows up, you poke it good and hard in the eye with a pointy stick. Someone will, no doubt, be along shortly to pass you the GM pointy stick. This is not meant to make fun of how you're feeling, or to minimize your feelings in any way. It's just a reminder, with a little humour thrown in, that guilt isn't going to get you anywhere except feeling stuck and try not to let it rule your head. As with so much advice here on TP, this is easier said than done.

Of course you want your mum to be seen by the doctor and to get whatever care she needs. We completely understand that and it's a reasonable thought!

However, the sad reality with many PWDs is that, for many reasons, it isn't always possible to put care in place right away or get a diagnosis quickly or even take care of other issues the way we would like. The dementia, especially in earlier stages where the PWD may have some awareness that there is a problem, and some capacity (albeit likely fluctuating), tends to interfere. Sometimes all you can do is everything you can do for now, and then you have to wait for a crisis (or opportunity) to do the next thing.

There are things you can do. You can look for support for yourself and your sister and your mum's partner. You can talk to the GP, and continue to talk to them. You can encourage the GP to see your mum; suggest that they call her in for a annual visit, a flu jab, a well woman check, "that new paperwork the NHS is requiring everyone to do," whatever will get her in the door, or ask for a home visit. Send an email or letter once a week with your updated concerns and questions. When and if you do get a referral to the Memory Clinic or a specialist or even a GP appointment, don't tell your mother about it in advance, don't ask her permission to go, don't remind her--just take her.

I know that sounds underhanded and deceptive, but sometimes with dementia you have to be pragmatic. If telling her will upset her, then don't. If asking her will elicit a refusal, then don't ask.

Something else you can do is to sort out Powers of Attorney, if you haven't already. If you (or your sister or mum's partner or whoever) don't have them yet, you may need them, and you don't want to wait until it's too late or an emergency situation, to try to get them in place. I will ask the UK experts here to advise you about how to go about this. Age UK can also, I believe, offer advice and even help with the paperwork.

I hope you don't now feel overwhelmed by a long list of things you need to do; that's not my intent. The most important thing for you to do is to give yourself time and space to absorb the situation, and not to blame yourself--as much as you possibly can.

Again, so easy to say, and so very hard to do. I have been there and done that with trying to help a parent (my mother, Alzheimer's and no short term memory) long-distance and against all sorts of opposition. It is not easy or pleasant to be able to do so little. I hope you won't have to wait for the crisis (as I did, and others here have) and that you will find a way forward.

If it helps, please do keep posting here. TP is always open!

 

[Fullticket]

Sorry if I am repeating as I've been away on a short break (without mum - shouldn't say hooray but I feel so much better!) and I haven't had time to read all the posts. The wine issue rang bells. Mum can put away a whole bottle if not prevented - probably more if she could find one. Wine decreases vitamin B levels so that adds to the problems with memory. As her sole carer and as she lives with me I also took the practical view that I would rather she not fall over due to alcohol, go to hospital, have a blood test and then I would get the bad eye for allowing her to get in that state and the possibility of having to nurse her through broken bones. So I go along the road of ordinary wine bottles filled with either alcohol free or 5% wine. She has commented on the taste but has not yet realised what I am doing. Once a week I substitute a new wine bottle with a label that reads 12% as she reads wine labels and notices if they are getting tatty - also allows me a much welcomed full fat bottle of plonk.

 

[utopian]

I'd also recommend getting Power of Attorney as soon as possible as it can make life easier.

I used tenminutewill online (do a Google search as can't post links yet) and printed it out and got mum and a carer to sign. It was relatively cheap and made the process a little easier as didn't want to be bothered with going to a solicitor. Once complete, you post it off to the Office of the Public Guardian to be stamped, registered and sent back.

utopian.

 

[Shedrech]

hi Mum1945
POA links to official gov site
https://www.gov.uk/government/collections/lasting-power-of-attorney-forms
and the guide
https://www.gov.uk/government/publi...ing-power-of-attorney-a-guide-web-version#A10

 

[Mum1945]

Thank you all so much for the advice. I agree that it's probably going to take a crisis for things to change.

She has been much more 'with it' over the last 36 hours but is now fuming with us all over the doctor incident. I spoke to her earlier and all she can keep saying is how none of her friends think she's ill (they do). What I can't make her understand is why we, her closest family, would be making it up. I want to write her a letter to express our concerns, pointing out some things that happened on Monday. Does anyone have any experience of that helping, or is that too much like trying to reason.

The idea of the power of attorney would send her atmospheric right now but I appreciate it will have to happen at some point.

I need to get her partner on board with the wine idea (I live 150 miles away) but I do think this will really help. Sadly I think he's trying to bury his head and wait for this storm to pass.

Thank you all so much again, I will re-read all the advice and links and start formulating some plans!

X

 

[Shedrech]

hi mum1945
personally, I wouldn't write the letter, or write it to get it out of your system but don't send it - it will just wind your mum up and give her something concrete to confirm how much against her you are - she is no longer able to see anything except her own point of view, and will twist info to make it fit - best to let everything ride for now; pick your battles - and remember that your mum may well feel an emotional reaction well after she has forgotten what triggered it, so she will feel she is annoyed with you long after she has forgotten why, and may then create a reason for her feeling - maybe instead work on being really pleasant and agree with her as much as you can, or stay neitral, so she builds up some positive feelings
best wishes