New member with mother just diagnosed

Mercuria

Registered User
May 7, 2014
25
0
Hello, I’m new here… I live about 200 miles away from my mother (79) so we haven’t seen each other regularly. We were due to meet up in London at Easter as it’s halfway between where we live, but she was ill and called it off. The next thing I knew she was rambling and delusional. I got an emergency doctor out who found nothing wrong with her (!) and told her to see her GP after Easter. He diagnosed a UTI and gave her antibiotics, which she didn’t take. I came down to see her and found her very cold, businesslike, remote – like a stranger. The next thing was a phone call at Easter from the police who had picked her up in the street trying to get into someone’s car in a very confused state.

She was taken to hospital and treated for the UTI but also diagnosed with early stage dementia. I went to see her a couple of times during the next two weeks and found her very rambling and delusional, easily distracted and childlike. She hasn’t been told of the dementia, and was discharged two days ago while I was at work on the grounds she was fit to go home (!). I told the nurses I had concerns but they seemed surprised. The antibiotics seem to have made no difference to her mental state.

The dementia support team met her at home and prompted her to phone me as she couldn’t remember my number. I was taken aback to find myself dealing with what seemed like a completely different personality – the one I met just before Easter. This one is cold, coherent, self-centred and presumably the one the medical staff have seen. In her absence I’d cleaned the house, replaced a leaking toilet, installed television for her, cleared a blocked drain, thrown out the rubbish and made a start on the garden. Her response was to ask if I’d paid any of her bills, say the garden looked a mess and ask why hadn’t I fixed the side gate.

It may all have been brewing up but I never expected this and feel somewhat stunned by the speed of events. This has all blown up in the past 3 weeks. We have no care plan in place because my mother won’t have one. In the end the hospital discharged her with just the standard personal care plan of someone to come round and wash and dress her, which she doesn’t need, so we cancelled it. I’m now a bit stuck. And bewildered. I don’t really know what to expect or where to turn – or how to find funding for what will be needed as my mother will emphatically not agree to care.

Sorry this is so long... just need to talk I guess. The “split personality” thing is particularly disconcerting. The cold one isn’t someone I want to spend time with, especially alone – she feels like a stranger, and not a very nice one. But she’s my mother…
 

60's child

Registered User
Apr 23, 2013
588
0
suffolk
Hi and welcome to the forum
You must be going through a whole whirlwind of emotions ...Would your Mum accept a "befriender" as opposed to someone going in to help her wash etc? They would be able to discreetly keep an eye on her without doing anything she may consider invasive. They could also take her out shopping etc
Have you got power of attorney sorted? If not and your Mum still has mental capacity it would be worth getting that in place as it is much more complicated a process when capacity is lost.
It might be worth asking for a social services assesment even if your Mum would be reistant to help at the moment. They would be able to advise you on funding etc
I am sorry, it must be such a worry for you being so far away. There is lots of support on here and some very knowledgable people so please keep posting.
x
 
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Merrymaid

Registered User
Feb 21, 2014
304
0
Hi Mercuria I have just agreed a care plan for my mother with the ss and I found they were happy to agree a plan that suited her needs at this present time. It did take a few calls from me to actually get a social worker assigned to Mum in the first instance but now that we have got over that things seem to be moving along quite well. Keep trying.

Regarding the changes in personality you have seen in your Mum it is very difficult to witness this but we have to remember it is the illness not our loved one we are having to deal with. The original sufferer is in there somewhere and it is your loyalty to them which will keep you going.

best wishes :)
 

Mercuria

Registered User
May 7, 2014
25
0
Thank you. The latest twist in the tale is that a specialist from dementia support came round and did an assessment on my mother at home – and told me yesterday that her symptoms didn’t match dementia. He found her to be cold but coherent, very articulate and quite capable of managing by herself. This is in complete contrast to the rambling, confused, childlike personality that I met in the hospital which it seems only I have seen. I pointed this out and he said that if she’s capable of putting up that kind of a front it shows logical thinking, which a dementia sufferer would not have. He thinks it may simply be old age, forgetfulness/confusion, the disorientation of being in hospital, and a large dollop of eccentricity.

So the verdict is that no treatment is necessary, no medication need be issued, just carry on as normal. Whatever normal is. He did say he would review it in 6 months and they have got her on a list for assessment at a memory clinic for which there is a waiting list for 6 months or so. I'm going to try to at least get a cleaner in a couple of times a week, my mother's fiercely independent so even that could be a battle.

I don’t know what’s going on here but something isn’t right. But if that’s the way it is, that’s the way it is. I’m keeping a low profile for the time being until she settles down to being back at home and into the solitude she’s used to, as I get the distinct impression she’s quite cross with me.

I really don’t know... in three weeks I’ve been suddenly plunged into the start of the grieving process, tried to adjust to a long, slow goodbye, and to get my head round adjusting to two new personalities and the loss of the old, but now have no idea what’s going on or what the future holds – this is all uncharted territory. All I can do is play this by ear and see how it unfolds on a day by day basis.

I may pop back again if things develop. Thank you for your support: as you will know yourselves these things can feel quite isolating.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Practically every dementia sufferer puts up a front to those in authority, especially medics. Are they all thinking logically? No. It's a phase in the disease. OHs vascular consultant asked me if I was sure he actually had dementia! He should have seen OH in the middle of delusions last year! That consultant now greets him with, Ah, the gentleman who pulled out his drains! (Also his epidural and cannula). He learnt!
Maybe your mums consultant should be reminded of one of our favourite sayings, if you've seen one person with dementia, you've seen one person with dementia!
 

KazzyF

Registered User
Nov 12, 2013
74
0
Solihull
My Mum is VERY convincing and at one point even had some of the carers doubting. Turns out that despite quite severe VasDem her vocabulary is tremendous. She also has a load of stock phrases which she wheels out! The consultant we had saw straight through it. Changed the subject once in a chat then asked her again what they had been talking about a minute ago. Answer MY LEG!!! Wrong!!


Sent from my iPhone using Talking Point
 

fizzbomb

Registered User
May 10, 2014
47
0
lancashire
I am so very sorry to hear about what is happening.I too am new to this site. I wanted to reply to your post, as in some ways it rings true with what is happening with my mother. I live over 130 miles away form my mam who has just had a diagnosis of mixed dementia, alzheimer's and vascular dementia. It was a huge shock for me to realise the extent of her problems, as my only contact with her has been by phone. And as you have experienced, the sharp contrast between lucidity and confusion, the changes in personality, are very difficult to accept and know what to do with.
Although you are in a 'wait and see' situation, regarding a diagnosis, do not give up on getting help you need in the meantime. My mother had an assessment last year and wasn't diagnosed, but now she has been, 6 months later. And now, all of a sudden, all the little things that have happened with my mother, the tales my brothers told me, make sense (although none of it really makes sense). And now me and my brothers are in the process of learning to cope, and trying to find out what help is available. In the meantime, as I can't get to see my mother much, I call every night, so she can hear my voice. She loves it when I laugh, says it is a breath of fresh air. So I try to find things to laugh about on the phone to her. I am trying to keep my sadness away from her. Though it is very hard to do!
Keep strong for yourself and look after yourself too.
x
 

Mercuria

Registered User
May 7, 2014
25
0
Fizzbomb, I really feel for you - it is a huge shock as you say, being plunged into this horrible new world that you never expected. And everybody's timescale is different. I'm glad you have such a lovely relationship with your mum that you can call her daily, and laugh together. That sort of thing is very valuable.

And yes, it is hard to go on being cheerful sometimes. When you look at them and you know and they don't.

Take care and I'm glad that things have worked out for you, your story has given me some hope.