Struggling towards accurate diagnosis - Urgent advice would be welcomed?

[Dave W]

My mother has been diagnosed as having 'small vessel disease' following a CT scan in March, after referral by her GP who was worried by possible memory. She scored 25/30 in the Mini Mental STate EXamination in March.

Over the last few weeks, a range of 'new syptoms' have been noticed - delusional episodes (which pass quickly), swollen painful hands, slight incontinence and depression. Close friends (she lives alone some 100 miles from me) alerted me to their concerns so I went to visit. A follow visit to the referring pyschologist saw her score 26/30 in the memory test. How legimitate is for me to be concerned as to whther we are witnessing:

* symptoms of a TIA, which may fade away or respond to treatment (these all started some weeks after the scan, btw)
* after effects of a stroke that has given a 'step' into vascular dementia?

It may help to add that she neglected to take blood pressure and blood thinning tablets between Nov 2004 and June 2005 (now under control and being taken as prescribed).

Any advice would be welcome. It's only after returning home yesterday after a bewildering two weeks visiting her GP and the referral pyschiatriast that I have discovered that delusion episodes, swollen hands and depression could be TIA symptoms, and I did not have an opportunity to mention this realisation to either doctor.

She seems deluded almost only ever first thing in the morning, and not every day. Otherwise she's fine, although she has no explanation for the 'attacks' (She's conscious they may be happening, and is inwardedly stressed.)

Social Services visited her after I'd left last Friday for an assessment, and will be monitoring her rom time to time (this occured as I mentioned the delusional episodes to the psychiatrist in confidence: her current diagnosis appears to be depression (which has some legitimate causes) and memory loss. Mum accepts some memory loss and is exploring memory aids for around the home.

 

[Jude]

Dear Dave,

A warm welcome to TP.

It might be a good idea to contact your mother's GP again this week and discuss your concerns. It may be that at this stage it will be a case of waiting to see whether your mother's health improves or otherwise.

You sound like you've got every angle covered thus far. Living so far away from your mother must be worrying because you can't just pop in on a daily basis to check on her. Fortunately it sounds like she has some very caring friends who are willing to help out and keep an eye on her.

Sorry not to be of more help, but I do feel that you need further medical advice first of all. Do keep us posted on how you are getting along.

Best wishes,

Jude

 

[Dave W]

Jude

many thanks for the reply - very comforting to receive one so quickly (I posted the same message of the Stroke Association website last night, btw), especially as I am finding the situation one in which it is near impossible for me to stay calm.

(Yesterday morning at 8am, I got a very distressed phone call from mum and could do no more than let her talk herself out, talk her out of phoning anyone else (to prevent further alarm). At 10.30 she phoned, bright and chirpy to say one of the neighbours had just popped round, she was having a cup of tea, and sorry for waking me up so early. I didn't ask if she could remember any of what she'd said to me and managed to stay calm for the rest of the day.)

As someone more experienced than me in handling this situation, it's lovely to have some words of wisdom and advice from an impartial third party.

Three more immediate questions if I may:

a) should I speak to her GP or to the referring psychologist?
b) given my mum is not aware that all these different symptons are possible stroke indicators, should I be at all open or questioning with her about this posible explanation? - I don't want to make a delicate situation worse, as I dread what might happen. The nightmare scenario is that she suddenly gets hospitalised without any understanding of what's going on - she's worried something's 'not right' and feels 'all unbalanced' (her own words on two occasions last week: we also had one wonderfully lcid and heart-to-heart chat one evening where she said 'It's all clicked: I've been dreaming things that aren't real'.)
c) I notice you are in Surrey - my mum's home country. How helpful have you found local services and charities in supporting you (should I be right on either diagnosis.)

Many, many thanks -

Dave

 

[Jude]

Hi Dave,

Do try not to worry too much! Look on the bright side for now - at least your mother remembers your phone number.......

In answer to your questions:

a] Both - why not get all the advice you can?

b] Probably better not to say anything to your mother at this stage until you have some further medical advice. Don't worry her unduly at this point.

c] The GP, Consultant Pschiatrist and Community Team here have been extrmely helpful for the past 6 years and the same people have been monitoring my parents during the whole time, which has given great continuity of support. We haven't always agreed about everything though!

Once you have all the advice and medical info, then you can begin to make objective decisions regarding your mother's future care. Just don't get pushed into doing anything that makes you feel uncomfortable.

You can always do a load of 'reality testing' on TP.

Cheers,

Jude

 

[Dave W]

Hi Dave,

Do try not to worry too much! Look on the bright side for now - at least your mother remembers your phone number.......

In answer to your questions:

a] Both - why not get all the advice you can?

b] Probably better not to say anything to your mother at this stage until you have some further medical advice. Don't worry her unduly at this point.


Once you have all the advice and medical info, then you can begin to make objective decisions regarding your mother's future care. Just don't get pushed into doing anything that makes you feel uncomfortable.

You can always do a load of 'reality testing' on TP.

Cheers,

Jude

Jude

I'm sure you're right - and wise, and I'm beside myself with anxiety which isn't helping anyone. (If you were not on the other end of a computer line, I'd still want to give you a hug though!). My mind is thinking through every possible conclusion and issue and not helping me to see straight as to what I shoul do constructively next.

I'll speak to her GP in the morning, and say nothing more to Mum in the meantime. The phsychiatrist and GP are going to take action on memory loss (Mum's going to get a dosset box so she takes her pills, and starting making lists so she doesn't forget things - after all, I have to do that for everything, and I'm only 45!!) and depression.

Right, will force myself to watch some **** telly for the rest of the evening!

Cheers,

Dave

 

[Jude]

Dear Dave,

Anxiety gives you a real speed rush, so channel the adrenaline hit in a positive way whilst you wait for the 'verdict'.

There are some really good Fact Sheets on AD on the main part of the AS website.

Better the devil you know, etc.

Jude

 

[Dave W]

We have an unfortunate complication today.

As I said, Mum has a pattern of being very 'groggy' early in the morning (she wakes up at 6.30 or earlier most days).

In the horrible confusion of the 10 days I spent with her (neighbours worried it's onset of something, taking her to doctor and referal doctor, me talking to referral doctor about fleeting delusional moments, social services sent in for assessment (which her GP was going to do anyway, but I was called down by one of the neighbours anyway, only to arrive in sea of misinformation), I may have made an awful mistake.

At some point, during one of the brief confused/delusional moments, not knowing what to say, I must he said something about 'illusions' and connected it in some way with her GP (possibly Sat am, when she was about to phone the police about why she wasn't at home and where was everything).

As I hadn't heard from her at all yesterday, I phoned her last night (about 10.30-ish) and she seemed ok but said she'd felt a bit grotty.

This morning she's just phoned, lucid but anxious and depressed, to the effect of me saying she was having 'illusions' and that if she speaks to doctors about this they'll take away 'for six months or six years'. She's almost joining the dots herself, and doesn't like me being 'mixed up in all this'.

Where on earth do I go from here without doing anything that will make the situation worse?

I've tried to do what I thought was best by alerting doctors to symptoms Mum was keeping to herself so we could identify if she had/has a problem, and I can't help but think it's all backfired.

I'm feeling very guilty here.


Dave

 

[Dave W]

Dear Dave,

Anxiety gives you a real speed rush, so channel the adrenaline hit in a positive way whilst you wait for the 'verdict'.

There are some really good Fact Sheets on AD on the main part of the AS website.

Better the devil you know, etc.

Jude

Jude (or anyone else)

given 'everything' (well, everything that worried anyone around her - her GP was worried a little about memory loss in March) seems to have happened from about mid-May (she was fine before then), AD seems unlikely? More likely occasional mild vascular?

Existing CT scan showed no sign of AD, but was taken in March. No meds = risk of mild strokes = either mild vascular or after effects of stroke he doesn't know she's had.

 

[Jude]

Dear Dave,

Calm down, mate! Don't beat yourself up and get stuck on a guilt trip.... You haven't made some AWFUL mistake here. You are just covering every angle at present, which is what every carer does all the time.

It could be that your Mum is beginning to suffer from dementia, AD or vascular dementia. Her symptoms could be the effects of a stroke.

I am most definitely NOT a doctor, but delusions interspersed with periods of lucidity and attempts to phone the police are quite common symptoms of dementia. I have no idea if these symptoms occur with stroke victims as well, but I would assume not because I would think that physical illness would prevent it.

You are doing all you can right now and you are most definitely doing the right thing here. Your mother is 'mixed up', confused and frightened right now. You need to keep a clear head as far as possible.

Keep posting as much as you need to.

Jude

 

[Dave W]

Jude

thanks once again.

Faxed as complete a version of 'facts' as possible, with suggested possible explanation (stroke in May?), to both doctors today. Unfortunately, her GP's now on holiday for a week :-(

BUT ...

This evening, Mum rang about 7.30. Sounded a bit tired and groggy albeit calm, but came round quickly after a couple of sentences. And then she suddenly said "I think I know what might have happened. The night after the cricket reunion (which was May: trying to check date), I think I had some kind of brainstorm. Ever since then, I keep feeling a bit confused and everything seems a bit of a jumble."

Given that confusion of thought is a possible stroke symptom ... ? (Spoke to another friend here this evening who's Dad had a small stroke a few years, and was wildly confused for about 8 or 9 weeks, and then it all slowly cleared, so this is a possibility.)

It's like she really is trying to piece things together herself.

I guess this is more useful info for the doctor tomorrow morning?

Anyway, must finish the housework and go to bed. Thanks you for moral support - it really does help hugely.

Dave

 

[Brucie]

Hi Dave

from the exchange of messages above, I'd put in a hypothesis of a form of dementia. I'd not worry which flavour at present, because it might not be that at all. But on balance, that's how it looks to me, a layperson.

Assuming that, then the things you mention - depression, illusions/delusions, fear of being 'put away', wanting to go 'home', etc - all of these happen with a dementia. My wife Jan also had Reynard's Disease, which caused her fingers to become very red, and swell.

Also, in the earlier stages, things do come and go. You never know where you are with the person.

It may be that she is approaching the point where having an ordered pill box and writing notes is not going to help. They get beyond that form of help.

Sorry not to be able to be optimistic, but with my wife's dementia [and I'm still in that nightmare with her] I found it most helpful to be harshly realistic with myself. No point in fooling oneself.

Generally a diagnosis of dementia is made partly from the symptoms the person has, and partly by ruling most other things out. Jan had CAT scans and MRIs over the years we were trying to get a diagnosis but it was not until very late on that they would look at a later scan and say it was dementia - and that was when they had ruled everything else out.

With this disease, everyone seems to have a different idea of what it is until the last possible moment because they all see slightly different facets of it, and the patient is better on some days, worse on others, etc so can by their behaviour and ability to cover the lost capabilities, fool someone who doesn't see them on a daily basis.

100 miles is a long way away to live from her, and the key thing you need to consider is her safety.

Don't feel guilty about any of this. There's no greater love one person can have for another than one that has them do what is right even when it tears them apart to do it. In a way your Mum is your child now, and you can only do your best to help her.

Do continue to keep records of how YOU see her condition as that may help the doctors to understand how she is when they are not seeing her.

It's a bummer and I repeat... you can only do your best for her.

 

[Brucie]

Definitely worth while checking the stroke route!!!

As you have already said, the symptoms can be similar in the period when the brain is settling back again after the stroke.

Keeping fingers crossed for you both...

 

[Dave W]

Brucie

we seemed to go from nightmare to hope there very quickly (sums up the last couple of weeks, really).

I am privately telling myself I need to be prepared for the worst, but like any human being would like to have a more optimistic option available if possible.

How significant as clues might the rapidity on onset and transient nature of effects be. I didn't press the point with her tonight, but I feel like an 'explanation' (ie translating 'brainstorm' into something medical) would provide relef for her, which might reduce considerable anxiety and stress.

And how far might anxiety and stress in themselves cause exaggeraon of symptoms. (I get a sense that when she's calm, she's just fine, and one of her neighbours made the same observation too.)

Thanks for your posts.

Dave

 

[Brucie]

Hi Dave,

I became very confused with Jan's symptoms because they seemed not to match what I was expecting for Alzheimer's.

It all fell into place when I found out that she had part Alzheimer's, part stroke-induced dementias. They have some areas of similarity, but the development for Alzheimer's is normally gradual, and for stroke-induced it happens in steps when the strokes occur. If you overlay the one on the other then a very great degree of interference happens with trying to predict what the hell is going on.

Oh yes, of course we all want to think there's been some mistake, and there is some explanation that is not dementia. Sometimes I still think that way with Jan, after 15 years of this hell.

Anxiety and stress come and go, and of course they can quite dramatically affect behaviours.

 

[Sheila]

Dear Dave, sorry not to have replied before, but Jude has been so right in what she says, not a lot to add really. I think you are doing the right thing in getting the GP etc involved. What ever the reason for the "wobbly" bits, you can't just ignore it can you? Till it is all totally investigated, it can only be any ones guess work and meanwhile it is a worry for you and for your poor Mum. A stroke can of course cause memery loss, which could improve with time. So could little strokes called TIA's, these can sometimes be part of Vascular Dementia, they were in my Mum's case. A lot of what you say, I can relate to from the early days of my Mum's illness. But, that may not mean your Mum has it too. Only the professionals have the means and tests to check these things out. It is natural for you to worry, it goes with the love bit unfortunately, so if you care enough to write in on here, it goes without saying that you have oodles of the love bit, so you will feel massive guilt for "dobbing" her in etc. I know that, cause I did in bucket fulls. But you have to get help, so you have to tell yourself that what ever is the cause, she is not 100 per cent her usual self, so therefore you have to speak to her GP. You would if she had a gaping wound on her leg that she wouldn't get treated, this is the same, she is showing symptoms that need medical treatment. Please try not to beat yourself up so much my love, easier said than done I know, but you need answers. Without them, you can't plan, or help your Mum and she needs you to be strong now, even when you are hurting inside. Thinking of you, love She. XX

 

[Dave W]

Dear Dave, sorry not to have replied before, but Jude has been so right in what she says, not a lot to add really. I think you are doing the right thing in getting the GP etc involved. What ever the reason for the "wobbly" bits, you can't just ignore it can you? <snip> Please try not to beat yourself up so much my love, easier said than done I know, but you need answers. Without them, you can't plan, or help your Mum and she needs you to be strong now, even when you are hurting inside. Thinking of you, love She. XX

Sheila

thank you. I've literally just been called by a mental health nurse who's with Mum now. She's accepting set up of CPN visits every morning to ensure she's taking medication, eating breakfast and generally 'coping'. They will also set up meals on wheels for a mid-day meal. They're going to monitor on a daily basis, but have put Mum on a waiting list to go into hospital.

I'm 50% numb, and 50% glad (the wrong word, but I can think of no better) that something is being done. I just wish my partner was with me to give me a hug :-(

Dave

 

[Jude]

Dear Dave,

So glad to know that you've been able to organise some immediate help on a daily basis.

I appreciate how you feel about this. We've all been there and still are really.... It hurts so much to see our loved ones like this. All we can ever do is to keep them safe and as happy as possible in a no-win situation.

You're doing fine.

Jude

 

[Sheila]

Dear Dave, know just what you mean, kinda sicky feeling inside that you can't shake off, all kind of mixed up emotions and yet there is a relief that others will now be involved and able to share your concerns and help care for your Mum. It is a horrid time for you, I am so glad your Mum has agreed to have help, she will now have a regular point of contact, as will you. This way any problems can be swiftly sorted. Love She. XX

 

[Dave W]

Thank you She/Jude

Sheila/Jude

two heart warming messages: thank you both.

A long day where I've felt alternatively blank and tearful (relief that something is being done to help the situation, and sadness at the situation itself: Mum's not always been the easiest woman in history, but it's awful to see someone who's been so spirited and fiesty for so long now so confused and low - and so suddenly. This all seems to have sprung on us in about 8 or 9 weeks flat - it's a terrible shock. But at least knowing you can't deny it makes it somehow easier to face.

Miraculous that people all around me are being so supportive and caring: the office made me go down the pub tonight and play darts to stop me thinking about everything for an hour or two (our MD's PA went through a slower version of this with her step-dad and has been a tower of strength), and the house has been full of visiting friends this evening (by sheer luck of the draw, my closest friends include two wonderful local social workers).

CPN will be giving her own briefing to Soc Services - another help (she sounds excellent, and very understanding: fingers crossed). They will aim to keep Mum at home as long as possible, as moving her will only add to confusion, but will be speaking to GP (on holiday till Monday) re further scan asap in order to help with hopefully more accurate diagnosis.

May you both have a peaceful night, and thank you for such a supportive and sharing welcome to TP: I'm so glad this place exists.

Dave
xx

 

[Sheila]

Dear Dave, glad to hear things are progressing with care etc. and that you have a good network of friends supporting you. Hope diagnoses and SS care plan soon get sorted out for your Mum, then you will be able to plan things so she is safe and cared for accordingly. Love She. XX