Consultant visit - what should I ask?

[SusanH]

Hi Everybody,

I am new to this forum and this is my first post asking for some advice, although I have been reading the posts for a while now and finding your experiences oh so familiar. My Mum is 72 and we have suspected she has had dementia for the past two years. It has taken us that long to get her to see the doctor and for the diagnostic process to take place. It has all been soooo slow. Sadly, during this time her condition has deteriorated considerably and she is now often scared and distressed.

Tomorrow my Mum will be seeing a consultant following an MRI scan a few weeks ago. I will be going along with her to support her and my Dad and I was wondering if any of you have any advice on what I should ask, or make sure is explained by the doctor? Obviously we hope to get a diagnosis - I am not sure how much the consultant will tell my Mum, but we would not like anything to be kept from her as I think it would be a relief to her to realise that she's not just going mad but that there is a medical reason for her behaviour and feelings! But at the same time I am aware that the diagnosis is likely to be deeply distressing.

I must admit I am dreading the appointment, but wondered if any of you can remember what it was like when you were in a similar situation and whether you have any advice for me? I know my Dad will be in bits so it will be up to me to make sure I ask the right questions and get the answers we need to do the best for my Mum in the future.

Many thanks.

Sue

 

[Lynne]

Hi Sue, and welcome

This is all sooooo scarey, isn't it. Evil damn disease.

I don't know if the format of the consultation is the same at each clinic, but when I went with my Mum, he saw her first separately, whilst I talked to his nurse and gave her a 'case history' of the symptoms & behaviour at home from my side of the fence.
If your Mum is anything like mine, she can put on a pretty good show of 'normal' to a stranger (like a Dr. who she has not met b4) so it may be a good idea to prepare some notes of odd behaviours, concerns etc. before you go cause your emotions will be churning on the day..
Just as a 'for instance', my Mum now puts away things in the kitchen any old how (milk in the cupboard, biscuits in the fridge) whereas 3 years ago it was a place for everything & everything in it's place, and woe betide me if I got it wrong!
She often forgets to open any post that's delivered, sometimes putting it away in a cupboard unopened. Last month I found a pension cheque from 14 months ago which had never been paid in!

Does your Mum (or did she pre-illness) understand what Alzheimer's Disease is? It's also referred to as Dementia, which itself was a problem with my Mum. As a former nurse (60 years ago) to her the term Senile Dementia conjured up memories of distressed & confused oldies stuck in a chair or bed in an institution, waiting to die. Both her GP & the consultant have been careful to refer to it as 'memory problems'. Like you, I would prefer that she was told the whole deal, but then again I don't want to give her the horrors. I haven't got the guts to tell her myself if I'm truthful. I might if she asked directly, but the ideal moment never presents itself. It's a tough one.

Don't know if that's helped at all, but please post again with any specific questions and I'm sure someone will give you feedback. Pretty well every type & stage of dementia is represented here, and there's more knowledge & willingness to help here than at ANY medical establishment.

Regards

 

[Áine]

hiya Susan

My experience with dad's first appointment was very similar to what Lynne describes. They sent a questionaire for me ("your friend or relative") to complete and return before the appointment ........ asking various questions about symptoms. I found that helpful and wrote quite a bit in addition to that because I find it easier to think whilst I'm on my own at the computer than when I'm faced with consultants and a distressed parent. It might be worth your writing down some examples of mums "odd" behaviour, your concerns and questions before you get to the appointment.

If your mum is wanting to know the diagnosis it might be worth saying this clearly right at the beginning. I remember when I went with dad, they were running late and the people before us were still waiting to be seen. When the nurse and consultant came to the waiting room to collect them for their separate discussions, i remember the daughter saying "you do know that mum doesnt' want to be told the results don't you?". Good time to be clear about what you want.

In dad's case the professionals were very clear about treatment options, attendance allowance, contact with Alz Soc ....... very clearly well thought through. Hopefully you will have similar experience.

The key question I remember asking ...... because I was pretty exhausted and phased by it all ........ and distracted by dad wanting to go home etc ....... is "when I get home and realise there are all sorts of questions I should have asked but didn't ........ how do I contact you to ask?" Again I was lucky ..... the consultants receptionist was fab at passing messages on, and the CPN was happy for me to email her with questions and concerns.

Best wishes to you all for tomorrow.

Áine

 

[SusanH]

Hi Lynne,

Thank you so much for your reply and your helpful suggestions. You know, you're absolutely right, my Mum is very capable of putting on a "good show" to mask her memory problems and I hadn't thought of writing out some examples of her increasingly strange behaviours. Thank you for that - I'll certainly do that. She went away on a coach trip last weekend and spent 3 1/2 hours repeatedly returning to the coach-park to make sure the coach hadn't gone without her. When she wasn't in the coach park she was crying in the Vistor's Centre because she was so worried about missing the coach. It was awful and my Dad couldn't reassure her.

Unfortunately my Mum is very aware of Alzheimer's as her mother had it thirty years ago. I think this might be the cause of her refusal to see the doctor for so long as her mum was treated with Electric Shock Therapy and ended up in a very poor state. One of my most painful childhood memories is of being taken to see my Gran when she was not recognisable as the person I had known, either physically or in any other sense. We've told my Mum that those sorts of treatments don't happen anymore, but her condition does not incline her to believe this. So I think she's being very brave to go to see the consultant and I suspect she must feel quite desparate to do so. She had a bad and frightening episode last weekend with the coach trip and I think she is very scared.

I guess I don't know what to expect tomorrow, so it is helpful to know that the doctor saw your Mum separately and you had a chance to talk with the nurse. I know clinics operate differently, but it is helpful to me to learn of your experiences so that I can feel a tiny bit prepared.


Sue

 

[SusanH]

Hi Aine,

Thank you for your helpful comments and advice. I will write down to ask about how to ask future questions so that I don't forget it in the heat of the moment! I do hope that we come across such helpful and informative people as you have - fingers crossed.

Thanks again for sharing your experiences - it makes it less scary somehow.


Sue

 

[Nutty Nan]

Dear Sue,
I hope your Mum's appointment goes well tomorrow!

I think I found my husband's first appointment and the MMSE test much more harrowing than he did, as he was not able to judge how well/badly he scored.

I was utterly amazed, though, at his ability to sound upbeat and convincing whenever we went for an appointment. Even months and years after that first time, when he was completely against seeing "that man" again, and threatening to get out of the car on the way there (??!), the minute he saw the consultant he would beam at him and say "oh, how lovely to see you again!!".

As I did not want to hurt and undermine my husband, I always wrote to the consultant 'in confidence' ahead of our appointments with an update of the things that had changed, the things that caused most problems, and any questions I had, and as a rule, he would the bring up subjects with my husband which were really meant to answer my questions. I was fortunate that I was always included in these consultations, which I don't think is necessarily always the case.

Best wishes!

 

[Margarita]

Ask about what medication they can offer your mother , after he told you the results from the

MRI scan a few weeks ago.

and what stage is your mother , when he done the MMSE test .


I sat quite, with mum while they done the MMSE test, after being told the results, then ask about medication. I regret that I did not ask what her scoring was 4 years ago.

 

[SusanH]

Thank you both for your advice and experiences - can I ask what is an MMSE test? My Mum had a visit from the "Memory Nurse" months ago, which prompted the appointment for the MRI scan. Is the MMSE test the same as what she did then?

Edited to add: I've just looked it up in the Factsheets section - this site is such a Godsend. It sounds as though this is the same test performed by the Memory Nurse back in August - I know my Mum found it insulting (!!) I've no idea what she scored (I was on holiday at the time). Really really big thanks for mentioning this test - another piece of information that will help me support my Mum today. I'm so glad I posted! I wish I'd known then what I know now.....

Sue

 

[Áine]

how did it go?

Hi Sue

Just wondering how the appiontment went?

Á

 

[SusanH]

Thanks for asking, Aine, I am just back. Well, we had good news I think, but I am now really confused too. The doctor was incredibly nice and helpful - he went through a whole battery of tests that had been done and said that in all of them the results were normal, or near normal. He said there was no evidence of vascular dementia and insufficent evidence for him to diagnose Alzheimer's. All of which is terrifically good news, but doesn't expalin my Mum's increasingly strange behaviour, anxiety and distress. He said many of her symptoms indicate clinical despression and has prescribed an anti-depressant. He wants to see her again in three months to see if they have had any effect.

I think my Mum's withdrawal from the world and "can't be bothered" attitude to everything from her previous hobbies to eating could be indicators of depression, but would depression cause you to forget how to use the television, to sort through your pills umpteen times a day, to repeat a question you'd already asked ten times in the past 30 minutes? Seems strange to me. We talked about the diagnosis a lot on the way home and when I was about to leave I said to Mum that although clinical depression was a rotten thing to have, what a relief it was that she hadn't been diagnosed with anything worse. Her response was to say "oh, is that what he said I'd got then?" And we'd only discussed it for the past two hours......

I am very confused, but do hope that the anti-depressants will give her some relief from her anxiety. I guess we just have to wait and see.

Thanks again for asking how it went. Maybe I'm a fraud for posting on this forum, but I can't see how a diagnosis of depression covers all the strange symptoms she has. But then again, I'm not a doctor and what a relief it was to hear him say her brain scan showed only atrophy as expected of a woman of her age.....

Sue

 

[Áine]

Hi Sue

I don't think you should feel a fraud at all! You're genuinely concerned about something which sounds very like what other people here are describing about parents who have been diagnosed with dementia. The absense of a diagnosis doesn't make you a fraud

Although I was sad when dad was diagnosed with dementia it was a relief too, because what was happening finally seemed to make sense, and we could start making plans. I can imagine the relief to NOT get that diagnosis, but the anxiety at then not being confident that a diagnosis of depression fits. I guess depression (and/or anxiety) can cause serious problems with concentration and memory. Maybe it's not surprising that mum was forgetful today ......... given what you said about HER mum ....... she must have been terrified. I wonder how much her experience of seeing her mother being ill with Alzheimers is affecting her symptoms? I wonder if FEAR of Alzheimers might be as debilitating at some level as Alzheimers itself.

Anti-depressants, depending on which one mum is on, usually help to some extent with anxiety too. They take a while to have a useful effect though, although you can get yukky side effects pretty much straight away Sounds like an uncomfortable situation of "wait and see".

take care
Áine

 

[Lila13]

We knew my mother had dementia 5 months before any professional agreed, and her next door neighbour had probably known long before we did. And for some it's a much longer time, from when nearest-and-dearest know to when a diagnosis can be made.

My mother was very good at doing doctor's tests.

Lila

 

[SusanH]

Thank you, Aine, you are a very kind person. I agree with you, worrying about her memory problems has probably made my mum clinically depressed. The anti-depressant is called Escitalopran and the consultant warned us of the possible side effects. I hope it helps. I must admit the results we got were not what I was expecting and I am still struggling to understand them.

Thank you Lila for your observations. I don't know why the tests show no physical signs of a problem when there so clearly is one. I guess we just have to wait the three months and hope that in the meantime the anti-deressant helps a little.

Sue

 

[Sandy]

Hi Sue,

Have you seen the Alzheimer's Society's fact sheet on depression - it gives a good outline of the relationship between depression and dementia:

http://www.alzheimers.org.uk/How_is_dementia_diagnosed/Conditions_with_dementia-like_symptoms/info_depression.htm

There is also another good fact sheet (from the North West Dementia Centre) that explains how doctors differentiate dementia from other conditions, such as depression (in PDF format):

http://www.pssru.ac.uk/pdf/MCpdfs/Differential_diagnosis_factsheet.pdf

Regardless of the initial assessment made by the consultant, it is good news that your mother's difficulties are being taken seriously and hopefully the anti-depressants will relieve her symptoms.

Take care,

Sandy

 

[MJK]

Hi Susan,

Just wanted to let you know my Mum was prescribed Escitalopram for depression and it really did seem to make a difference to her. It took about six weeks before I noticed a difference - suddenly she seemed so bl**dy cheerful!! She also seemed calmer, and had no adverse side effects. However she already had obvious (not then diagnosed) memory problems which weren't eased by the antidepressant, but life seemed to be much better for her. She is still on the antidepressants and has subsequently been prescribed Aricept following a diagnosis of Alzheimer's. To be honest I haven't noticed any difference from this drug, but I know it varies a lot from patient to patient.

I hope the antidepressants help your Mum, I know there is a complex relationship between depression and dementia so fingers crossed they make a difference for her.

mjk