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New Member/new Carer/new Diagnosis!

Discussion in 'ARCHIVE FORUM: Support discussions' started by clymout, Jan 10, 2007.

  1. clymout

    clymout Registered User

    Jan 10, 2007
    Hello everyone,

    Soooo glad to have found this site!

    My mum has a recent diagnosis of Alzhiemer's but it didn't come as too huge a shock. She's deteriorated quite rapidly over the past few months and I've had a suspicion something's not been right for a year or two. It's just been really hard to gently coax her to the doctors to talk about her memory problems!

    Anyway, I have lots and lots to ask everyone and would really value some help and support. She has just started getting professional care and is under a psychiatrist. Last May, another health professional suggested to me that she may have Vascular Dementia because she has been having symptoms of mini-strokes. These symptoms (waking up confused and dizzy, with nausea, trembling and weakness in her arms) have increased significantly over the past three months and her mental impairment has worsened alongside. However, her psychiatrist says her dementia is probably Alzhiemer's and I wonder how they tell the difference. (My maternal grandmother also had Alzhiemer's).

    Mum is having quite a bad depressive episode at the moment with lots of anxiety symptoms and the psychiatrist said this could be the cause of her physical symptoms. She has been taking the antidepressant Citalopram for four weeks with no improvement and has been more or less permanently staying with me because she can't cope on her own. She's 78.

    I wonder if anyone has had a similar experience and whether her depression will lift? The psychiatrist says that he can start her on medication to help her memory once her depression is treated.

    Many thanks.

  2. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi J and a BIG welcome,

    Firstly, here is a link to a factsheet on vascular dementia.

    Many people on the forum have had experience with Vascular dementia diagnosis and hopefully they will pipe up with help. Depression is also common unfortunately and not surprsingly.

    Dads depression lifted without antidepressents - he was given medication to help with anxiety instead.

    Again sure plenty of people with jump in with more specific advice.

    Kind Regards
  3. dmc

    dmc Registered User

    Mar 13, 2006
    hi clymout
    welcome to TP

    not sure i can help much but i know through my mums experience with antidepressants, they do take a good few weeks to kick in, give the citalopram a bit longer im sure you'll see a difference soon
    take care
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    After 4 weeks, one would expect the anti-depressant to have had some effect. Is she on a very low dose? I would suggest going back to the prescribing doctor and asking for an increase if that is the case - 2-3 weeks to start working is quite usual, 4+ weeks is not.

    As for how they diagnose AD as opposed to vascular - I think the expression is "clinical experience". Some people have had scans, but there is no certain way bar autopsy. Does she have high blood pressure? That's one of the things they look at before diagnosing vascular. With a family history of AD, I think they tend to lean towards that way. It is, of course, quite possible and common to have both.
  5. clymout

    clymout Registered User

    Jan 10, 2007
    Thanks for your replies all.

    Mum is on the recommended dose for elderly patients of 20 mgs. We see her consultant again on the 29th so I will discuss everything with him then.

    Mum's BP is fine, she's never smoked, isn't overweight or has any of the other contributing factors for vascular dementia from what I have learned so far. Her physical symptoms do seem to overwhelm her though, especially the lightheadedness and disorientation which she is now constantly complaining of. She is taking Betahistine when she gets a dizzy spell and these do seem to help for a while. A head scan earlier last year revealed nothing too untoward from what the GP has told me but she's become much worse since that.

    I really hope we can expect some improvement, as she's completely debilitated by her symptoms, even more so than her memory problems, which, I am reliably told, are only moderate at the moment although they seem quite catastrophic to me!

    Oh - one other thing. I've never thought it would be in mum's best interests for her to know of her diagnosis so she's in the dark, so to speak. I'd value other carer's views on this.

    Many thanks.

  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
  7. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hi Clymout

    My mum also has AD/VaD. Unlike yours, my mum smokes like a mill chimney (always has done) and has other associated chest problems. In terms of telling her about the diagnosis ... well. She obviously wanted to know what was wrong, so once I got the results of the brain scan, which showed a couple of 'small' strokes - but with the chance of others deeper in the brain that weren't visible on the scan, I told her. I didn't mention the AD as I thought it best not to. In a way, this has back-fired (on me), because although mum remembers the stroke diagnosis, she thinks that because she's not paralysed then the strokes haven't affected her. Maybe a 'slight problem with memory but I'll get over it'. (Her words). In the past few months, I have tried to broach the subject of AD ... without using the words ... oh it's so awful. Anyway, sometimes she remembers that she has a 'degenerative brain disease' and other times 'there's nothing wrong with her'.

    The long and the short of it is, is that eventually she won't remember anything. It must be hell for the sufferer; periods of lucidity and then total blankness. As carers we want to do the best, but sometimes it feels like we're doing the opposite.

    Go with your instinct ... good luck!
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello J/Clymout, Welcome to TP.
    Can I suggest you keep a diary of signs and symptoms, ready for future visits to the psychiatrist. If your mother is hesitant about discussing her symptoms, I found it helpful, when my husband was first diagnosed, to send a short report to the psychiatrist before any appointment. You might wish to do that.
    As far as telling her the diagnosis, I played it by ear. We didn`t tell my husband at first, but as symptoms increased, I realized he needed some explanation. Although it was upsetting, it was a relief, in a way, to be able to put a label on it. Now, whenever he has a particularly bad day, I can say `It`s the Alzheimers`.
    Keep posting on TP. I`m sure you`ll get lots of support. I did. Love Sylvia
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    You might also bear in mind that even if you don't tell her, someone else (health professional, nurse, doctor) may well mention it in passing, assuming that she already knows. It is very much a personal thing, both for the carer and the sufferer. My mother has found it a comfort to be reminded that she's a)89 and b) has had a stroke, because that means that if she finds it difficult to do things it's "not her fault".

  10. kazlou

    kazlou Registered User

    Feb 3, 2006
    Hi welcome to T.P
    My Mum has mixed dementia AD & Vascular, and is on antidepressants, we have found they do work to a degree but need about 4 - 6 weeks to kick in, trouble is my Mum forgets to take them every day and also with her drinking alcohol it lessens the effectivness of the medication.
  11. Kayla

    Kayla Registered User

    May 14, 2006
    My Mum got very depressed before we actually knew that she had vascular dementia. Once her dog died in 2002, she seemed to give up and became very lonely and she was also increasingly unsteady on her feet. She was taking a cocktail of various drugs for her rheumatoid arthritis, blood pressure, tummy problems, hallucinations and other things, but was not really taking her medication properly.
    Moving into a Care Home meant that she was eating better, taking her medication correctly and had company all the time if she wanted it and she improved considerably. Now she is in a Nursing Home and her condition is stable after her hip replacement last year.
    If people don't eat properly, then their medication will not work consistently. Mum got really confused about the time of day and would eat her dinner in the early hours of the morning, or go to bed in the afternoon. Mum did take a long time to settle into the NH and was very depressed and confused, but now she seems much better. She is 81.
  12. clymout

    clymout Registered User

    Jan 10, 2007
    I think I am delaying the inevitable with regards to mum having to go into care, but being an only child and the only surviving member of our family, I am struggling to make all the caring decisions alone. My hubby is really supportive which is a great help but it's hard not being able to sit down with a blood relative and say "ok - what next?"!
  13. sarahc

    sarahc Registered User

    Apr 4, 2004
    Only child

    Hi there , I can relate to you being the only person to have to make the decision. I am an only child and in the same position with regard to my mum - there are a few other relatives kicking around but they are generally useless. I put mum in a home about two years ago and althought her vascular dementia has deteriorated considerably she is in the best place and well looked after.
    Keep posting on Talking Point if you want support.
    How did you find out about the site by the way ? - we are interested in ways people come across Talking Point...
    Thanks Sarah
  14. clymout

    clymout Registered User

    Jan 10, 2007
    I came across the talking point from the good old Google Search! I always prefer to visit UK based websites so the Alzhiemer's Society was a good place to start.

    I already feel at home and more comforted than I've felt in a long time, reading other people's experiences that I can totally identify with. One of my next questions is going to be time span, I know there are loads of factors to take into account, but reading some of the postings, my mum seems worse than some but only recently diangosed, whereas others have known about diagnosis for years. It's all a bit of a mystery but by sharing our experiences we are doing eachother lots of good.
  15. sandy25

    sandy25 Registered User

    Nov 30, 2005
    My dad is on Citalopram too, I was told that people with VD are more likely to need anti-depressants as they will have periods of regaining a bit of their old self (from what I gather this isn't as common with Alzheimers) and during this time the realisation of whats happening will sink in. My dads took a while to kick in I think (started on them at time of diagnosis 6 years ago) and over the years they've increased the dosage.

    He's deteriorated rapidly in the last 6 months, to the point where he now will be going into full time care, and our last consultant appointment implied that the original diagnosis of VD might not be the case and it might be alzeihmers. Which he said was not an issue, but then again, I think it is an issue as he could have been put on aricept or something similar 6 years ago. We were always told there was no medication for VD other than choloesterol lowering tablets.
    With heinsight...:(
  16. dmc

    dmc Registered User

    Mar 13, 2006
    hi again clymout

    this time last year, the consultant told us my mum had a dementia similar in its progression to CJD, he went on to tell us that she had 12 months to live.
    however in sept/oct at another meeting he said it seems like the progression wasnt as rapid as he first thought and that even though he thought she would be dead by now it seems she could go on for much longer:confused:
    he cant even tell us what dementia my mum has, so timespan is a personal thing to the patient i think, thats why its better to take one day at a time and try not too think to far ahead.
    anyway thats just my experience and i know many others vary in their own experiences.
    so glad your finding TP a source of comfort, i dont know what i would have done without it the last year.
    take care
  17. 88alli

    88alli Registered User

    Jan 11, 2007
    #17 88alli, Jan 13, 2007
    Last edited: Jan 13, 2007
    Hi Clymout.
    I have only just joined TP and this is the first time I have written in. Sorry about your Mam!:( My Mother in law has just been diagnosed just before Christmas (aged 74) with AD. We have suspected it for a while. She has deteriorated so much in the past few weeks, it is awful. I think she is suffering from depression also. Is your Mam improving on the Citalopram? It can take up to six/eight weeks before it really kicks in, and she isn't on the maximum dose (80mg for the elderly).Maybe you should have a talk with her doctor, if he knew she wasn't improving I am sure he would increase her dose. There are basically four different groups of anti-depressants, with various drugs within those groups. I am sure if you spoke to her doctor he would be willing to assist in any way he can. My Mother in Laws doctor has been really helpful. She has been put on Aricept straight away from diagnosis. This week I have to take her back to have the dose increased. I am dreading taking her. Since starting the medication she seems to be becoming worse. She goes to bed at strange times. She doesn't seem to want to leave the house at all.
    Like you my husband is her only Son. It is so hard not having any other family to share the problems with. It is having a bad effect on my husband and I and also our teenage children. I know exactly what you must feel like. It is so cruel isn't it?
    Oooops this is being too long winded!! I just wondered how you Mam was getting on?
    Thinking of you
  18. Áine

    Áine Registered User

    I think you'll get away with longer posts than that before anyone says you're being long winded :) Welcome to TP Diane.

    I had a similar "only child" problem when caring for my dad. Then again, when I hear of the trials and tribulations with siblings that some people around TP have had (are still having) I wonder if it might have been a blessing to be an only child. :confused:
  19. clymout

    clymout Registered User

    Jan 10, 2007
    Hi Diane and Richard,

    I am sure that like me, even in the few days I have been a member here, you will feel really comforted knowing there are so many others in the same boat as us! Yes, it's incredibly hard isn't it? I think I am going through every emotion known to man at the moment!

    The Citalopram hasn't made much difference to mum, since early December, she has only managed two nights in her flat, and that was with daily visits from the care team. Even since Christmas she seems to have deteriorated, I just can't believe how rapidly things are going. My hubby and I have decided we are going to move her in permanently. I've seen such a change in her lately I don't feel I can do anything else and I am sure it will only be a matter of time before she needs 24 hour professional care. I've once again come back from the GP none the wiser. Her physical symptoms of dizzyness and pain all around her left side (she's also blind in the left eye) are being put down to loss of brain tissue so I still think there is something vascular going on as well as the AD. I'm sure it's the physical symptoms causing her debilitation, not the depression, which is better now she has permanent company with her family. I have a lot of questions for the psychiatrist when we see him again at the end of the month.

    Do you find yourself totally consumed with concern and worry? I think I have already started the grieving process but try conveying that to teenagers!

    Best wishes to you both on this difficult journey. Please keep in touch.

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