How do you come to terms with this illness?

Discussion in 'ARCHIVE FORUM: Support discussions' started by WendyW, Mar 2, 2004.

  1. WendyW

    WendyW Registered User

    Mar 2, 2004
    Have only just joined the Talking Point and am wondering if anyone can throw some light on my father's very recent decline into what we assume is dementia (my mother cannot believe that this is the diagnosis and we are waiting for his referral to a specialist, who presumably will give his verdict, we hope this appointment wont be too long in coming.

    He is 88 and has had a long and happy life including 28 years retirement with my mother; both who have been extremely fortunate enough not to have suffered any bad illnesses. Maybe a slight memory loss - peoples names etc but nothing more than the normal problems associated with old age and cerainly nothing to worry about. Still driving, socialising, travelling around and enjoying life - then came Christmas 2003. We picked them up and brought them the two hours to our house (too long a drive for dad) and enjoyed three or four good days. Both parents had flu jabs in December and by boxing day both had bad chesty colds and I think were glad to get home. I then had an alarming call from my mother in the New Year (28/29 Dec) saying that dad had got totally confused -didn't recognise her, disorientated and looking for her all the time - also seeing people not there etc.
    This episode goes off and he recovers (mother called an ambulance because she was so frightened at the time) He has in the last few weeks repeated this type of episode and has at least been seen by the doc - blood and urine tests taken. Meanwhile I can hardly believe that someone can deteriorate so quickly over a period of about 10 weeks. My mother rings me constantly saying she can't cope, and when will he get better and also that dad is so sorry - he seems to know when this has happened and then promises not to be like it again - I feel so sad for her.
    I work part time so can go down to be with them as often as I can but I still can't believe this can happen so quickly.
    His dr. has given him Risperdal but we dont know what this does or how long to take effect. Funnily enough when I stay there I see very little of this behaviour - am going again today so will be there with my mother for a few days to give support and take them out in the car. She is desperately upset and I dont know how to make things better. Any words of wisdom will be great.
    Sorry this is such a screed but it gives a potted version of the last few months. At first I hoped it was the infection that had triggered things but that looks extremely unlikely now. As my mother is 84 its hard for her to know what to do and so new to me that I want to be able to say and do the right things.

    Bye for now, WendyW
    (Have re-read the above and sorry for how disjointed it sounds but will hopefully improve!)
  2. ironmaden

    ironmaden Registered User

    Oct 27, 2005

    i am going through the same as you my dad is 87 and have gone like your dad in 3 months when you read other peoples threads you can see your dad in all of them i see my dad every day so i can see it a lot but my brothers come in for 5-10 minutes and say hes looking well and he dont say anything wrong but the minute there gone he will start again like you said about your dad and the car ride we found the same with dad just a 2 mile jurney is far to much it is so funny how this dimentia effects so much of there body i hope you have a nice time when you see him and try to keep your mums chin up she will need it
  3. rummy

    rummy Registered User

    Jul 15, 2005
    Hi Wendy,
    My Mom has been diagnosed with Alzheimers for 1 1/2 years but we saw the signs for years before that. We couldn't get them to acknowledge there was a problem and get help until the day she didn't recognize my Dad, then they were forced to get help. It has been a steady downhil ever since. She is on Aricept and Namenda which have helped alot but nothing will make it go away.
    It is a very hard adjustment and you just have to take it day by day. This forum is a God send for me as my support group. I also lean on our local Alzheimers Society for advice and direction and have good doctors in place. Other than that, you just have to tackle it as it comes.
    Good luck with your folks and visit here often it really does help to vent.

  4. mcrookes

    mcrookes Registered User

    Jun 4, 2005
    Hello to you all

    Hello I'm also new on here, and it seems we have already lots in common.
    I am the carer for my husband who was diagnosed with Parkinsons disease five years ago, but over the last say twelve months he was getting quite confused.
    Our GP has frequently done the Folstein test on him, and usually his score was about 22-24, and our doctor once said that 24 or less was a it of a worry.
    Now three weeks ago, we went to the hospital and although I mentioned the confusion we were just going to keep an eye on it, but two weeks ago I notice a rapid deterioration, so I did the test myself, and he scored only 15, so this week I did it again and he scored 15 again, so I contacted our doctor. now my husband is only 65 so he's quite young to have these dreadful diseases, so if anyone has any advice to offer I'd be very grateful. Thank you.
  5. Charly

    Charly Registered User

    Jul 12, 2005
    Coming to terms with Dad's illness


    As hard as it may seem to believe - the illness can rear it's ugly head in full force and quite unexpectedly.

    I used to care for a gent who suffered from AD, whose wife loved him to the ends of the earth - but couldn't get her head round it all, made worse because it had all happened so quickly.

    When I asked her what first made her suspicious that he wasn't well, she said that one afternoon, he had gone out to buy a newspaper, which was his normal, everyday routine, then - completely out of the blue, the Police had arrived at her house with him.

    He had been to the Police Station and told them that a "woman" was in his house and was "pretending" to be his wife!

    He stood there, shouting and arguing with her, and demanded that the police arrest her. Of course, the police were satisfied that his wife was who he said she was, but this is an example of how quickly it can take effect.

    It is interesting how those suffering from AD can almost "hide" it when they want.

    Family members often state that when an "outsider" isn't there, their loved ones use language which could make a builder blush, throw furniture and harbour some habits!

    You should prepare yourself for your Dad's consultant to come back with a diagnosis of dementia and so, should do your research on the subject by reading the literature supplied on this site (some of which may not make for easy reading) and find the best way to put it to your Mum.

    Only you know in what way will be the best for her to accept and understand, but you must be honest - regardless of how upsetting it is.

    You can of course, always check in to this forum for help and advice, whenever you feel you need a little bit of moral support or guidance in any way.

    I wish you all the best,

    Charly x :)
  6. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    Hi Wendy

    I agree with Charly. My mum whose domain was the kitchen all her life, suddenly asked me one fine morning how tea was made. It really took me by surprise and initially, quite unprepared, I just attributed it to 'old age' but then I began to notice things gradually. I noticed that her facial expression had changed - she turned into a humorous personality , laughed if I admonished her and much to my astonishment, she didn't have the usual inhibitions (for example, earlier she would have refused to wear a certain garment but she didn't seem to care anymore).
    But as you are aware, no two Alzheimer patients are alike - depending on what's going on in the brain and which part, there is a range of patterns, some recognisable and some not.

    Risperidal is an anti psychotic drug - to keep away the hallucinations but in my mum's case, it hardly worked. The only drug which seems to be working in her case is haloperidol which is rather old. Always do read up on the side effects of these drugs, and other warnings to prepare yourself for any eventuality.

    Aggressive behaviour usually results from horrible hallucinations - seeing unwanted things and objects that are frightening (my mum recently smashed our front door made of glass ) and so keep sharp objects/potential weapons out of reach and out of sight. But there's more which of course, you will read on other threads here and the web site.

    Keep us posted.

    Sue Stimpfig
  7. noodle31

    noodle31 Registered User

    May 1, 2005
    Hi Wendy

    I could of written your post myself! However my dad is just 68...

    He had a rapid decline earlier this yr, and has since been diagnosed with lewybody dementia and parkinsons disease

    I would like to say stay strong, but it isnt that easy...

    you will get lots support and advice here tho, they are wonderful people

    good luck

    hugs for you all

    love Jane x
  8. Mirium

    Mirium Registered User

    Oct 29, 2005

    Hi. I'm new to this so bare with me please. My mother has been suffering from short term memory loss. She has been to the Memory clinic, had a brain scan, blood tests. Returning to clinic for results we were told the scan showed nothing, and she was given Aricept, but no explanation as to why.

    I'm interested in this Folstein test you mention. What is it exactly? Mum had a MME test and we were told she scored quite high?? Do you know what that means?

    Dad is so worried because information is so hard to get, the doctor just gave the pills and said come back in 3 months. Now we wonder if she has AD. I would be grateful for any advice or info that might help. Thancks for taking time to read this.
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Mirium,

    welcome to TP.

    I have a few points to make, but remember, I'm not a doctor - I care for my wife and have experience of her condition.

    As far as I know one does not simply get prescribed Aricept. There has to be a reason for it, and that reason is normally a diagnosis of dementia.

    Brain scans often show up nothing that is conclusive.

    The Folstein test is also known as the Mini Mental State Examination. "quite high" means nothing. Only a value somewhere between 0 and 30 means anything. I would expect a high score to be 25 and above, but as I say, I'm no expert.

    "just gave the pills and said come back in 3 months". That's appalling, not to give full information.

    I'd advise returning to the doctor and asking for a full description of diagnosis, results of tests, expectations for the near future, etc.

    Your Dad and you will need full support. You will find that Talking Point is a good place to learn, also the Alzheimer's Society Fact sheets

    don't be afraid to ask!

    Best wishes
  10. Mirium

    Mirium Registered User

    Oct 29, 2005

    Hi Brucie, WOW!!! What a quick response, thank you so much, I really appreciate your kindness and interest, I shall waste no time in following your suggestions. I am thinking of writing to the doctor with the suggested questions, do you think this will be ok? My Dad is of the old school who believe that doctors are like God and you mustn't ask questions because "they know what they are doing." At the same time I know he is very anxious about the situation and would like to be better informed.
    It was the MMSE test that mum had. (I forgot the S)

    I'd like to say I have learned a lot from TP, and thanks to everyone for participating and sharing information and experiences. It has scared me a bit to read of the way this illness progresses, but I guess it's best to be prepared.

    Many thanks again

  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Mirium

    glad to be of help.

    I no longer hold doctors in awe - at least not as a species. some are indeed awesome, but others, I wouldn't permit to wash my car.

    Do be open with them, unafraid to ask questions, and don't be afraid to push.

    You might also think of keeping a sort of diary to note down your Mum's condition each time you see her. This will enable you to track changes, and also to provide specific information to the doctors.

    If you don't log these things they all sort of merge into each other and you can't yourelf realise that changes have taken place, drip by drip, over time.

    You might do the same for your Dad as he will be under severe pressure.

    Same goes for yourself - it helps to write down one's feelings, over time.

    .... asif you haven't enough to do already .... ;)
  12. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Mirium,

    I would agree with everything Bruce has said about getting more information from the GP, in a way that both your parents feel comfortable with. I suppose part of the problem (from the GP's point of view) is that different people have different expectations of their doctors and want differing levels of information. These different levels of expectation remind me a great deal of when I was pregnant - some women wanted all the tests possible and made detailed birth plans, other women were happy to let the "professionals" run the show.

    Also, when dealing with something so new and unexpected as potential AD, it must be hard for your mum and dad to take it all in at once. Joining TP and reading about other people's experiences is a great way for you to support them, and yourself.

    Regarding your mother's diagnosis, it may be that she might be described as having "Mild Cognitive Impairment (MCI)". This is a newish term to describe people who have some degree of memory loss, but don't yet display the full signs of dementia. The medical opinion on the use of drugs such as Aricept to treat people with MCI doesn't seem to be fully developed at present. One study seemed to show that early intervention did stave off the progression into dementia for 2-3 years. Your GP's willingness to prescribe Aricept could be a sign of progressive thinking.

    Here are some links on MCI which might prove helpful:

    Take care,

  13. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    Hi Sandy

    Have noted the fact that like me, you too tend to use the internet to keep yourself informed - so now I am going to ask you - since I believe that's going to be easier and faster :p :)

    That's an interesting point you mentioned about staving off Dementia for a while. I noticed that my mother has suddenly begun to remember the alphabet and the numbers (which wasn't so few weeks back) . I attributed it to my playing her favourite music everyday and being with her in a therapeutic 'mode' (jogging her memory gently, taking interest in her ramblings , reassuring her and so on).

    So far, except Haloperidol, and sometimes Melperone, she hasn't been on any other drug to enhance cognition. She has bouts of agitation /aggression. I just checked out the price of Ebixa , expensive for me at 180 Euros a bottle - have to pay her excpenses myself as she is a 'foreigner' living with me here and I have given the financial guarantee for her to permit to live here in Germany. Therefore I worry about the costs :(

    Just wanted to know if Aricept is effective or Ebixa is more effective - what does your study say ?

    The Pharmacist also mentioned that different races of people show different results. He gave the example of Paracetamol - has different results on Europeans, Africans and Asians (I am Asian). :rolleyes:

    Would appreciate any views !

    Thanks again and take care,

    Sue Stimpfig
  14. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Sue,

    I have been reading your posts with interest over the past week or so. You are obviously a caring and resourceful daughter, trying to do the best for her mother in an increasingly difficult situation. I am also a non-native in my country of residence, so I do know how hard it can be in a variety of ways, some of which might seem trivial to those who have never lived abroad. (I'm from California, my husband is British - we married in the US, but have lived in the UK for 16 years now).

    Whilst I do appreciate your vote of confidence in my Internet searching skills, I couldn't even begin to speculate on results that would be relevant to your mother. I tend to try and answer very specific, narrowly defined questions - and treat anything to do with medication with kid gloves (even lists of side effects can biased).

    Something as complex and dynamic as dementia really does need a specialist medical team to offer the correct diagnosis and best treatment options. I gather from your posts that your mother's immigration status in Germany means that she is not entitled to free or subsidised medical care?

    You are clearly an intelligent woman, so please forgive if this question seems too cheeky, but are there any options (based on expert legal advice) that would allow your mother to reside permanently in Germany and get the medical care that she needs? I know that rules are changing in this area all the time and perhaps are not consistent across all EU coutries. I'm sorry, but it's the only productive line of inquiry I can suggest.

    Just one question though, has your mother had a formal diagnosis (following a brain scan)? It's just that there are different types of dementia and diseases that can cause demtentia-like symptoms.

    Take care,

  15. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Wendy

    As you will probably read here several times, AD-sufferers who are only in the early stages can be very good at 'covering up' the signs & symptoms. Whilst this might be very frustrating for the sons/daughters/spouses trying to get to a diagnosis, it's understandable. No-one wants to be perceived as getting doddery or confused, so outsiders (meaning anyone who doesn't actually live with them) get the full Best Behaviour act - I know Mum's doctor did for the first few visits.

    To an elderly person, terms like senile, dementia & Alzheimer's are the sound of a death knell. To my mother (now 86, but who was a psychiatric nurse herself) senility is synonymous with 'being locked up', and no-one views that prospect with any pleasure. So the likely reaction in these early stages is one of denial, and making every effort to appear normal. This makes the situation even more distressing for their immediate loved ones (like your Mum), as they may think that no one believes what they are saying, or about the difficulties they are having to deal with. This is in addition to the distress she must feel at the prospect of being left alone, if not immediately bereaved, by her life-partner.

    Your Christmas period 2003 sounds as if it might have been a trigger point. My own Mum's decline seems to have started about 2 yrs ago, when her younger sister became ill, and died from cancer. Weeks of travelling 200 miles up to see her every weekend, followed by her death & funeral, grief & depression, after which Mum was quite ill with a chest infection (& consequent antibiotics & steroids to pull her out of it) seem to have signalled the start of a gradual deterioration - with hindsight, that is.

    Whether there is a trigger point (and I have read of others) or it was a sudden onset is pretty academic anyway, I suppose. You have to take things day by day, and push the doctors for as much help as you can. From what I read, the sooner an AD-sufferer can be started on one of the appropriate medications, the more likely it is that the symptoms can be slowed down.

    Good luck; I hope your father can be stabilised, and your Mother's distress & anxiety (and of course your own) relieved as far as possible.
  16. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Wendy

    "How do you come to terms with this illness?"

    The short answer is you don't.

    The best we can do is take each wobbly step slowly and carefully and try to do the best thing possible for our loved ones as we watch them slowly slip away from us.

    Yes, they change little by little and sometimes massively very quickly, but our bonds of love for them can never be broken, strained a little sometimes, but we cope as best we can.

    I hope things improve for you very soon and you can see a little light at the end of the tunnel.


Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.