1. oberek321

    oberek321 Registered User

    Jun 4, 2015
    4
    This is the very first time I have tried to go on a forum, as advised by my GP.

    I am hoping for some advice. My doctor has suggested I should take a memory test to diagnose whether I have dementia. I understand that many people choose to take this test so that they know what will happen and be able to plan for the future. However, I do not want to take this test, as I would rather keep the possibility of having the hope of not having dementia. This is extremely important for me.

    If I took the test and it was positive I would not want to live. I would hate a life of being cared for, and I would have no hope or meaning of life. I only have one long-suffering friend - nobody else - and I often feel desperately lonely. I am not suicidal!

    I have had memory problems for a couple of years. My manager now wants me to take the test and consider possible medical retirement which might give me some money if I had to stop working. This could give a diagnosis of Alzheimers, and I cannot agree to this as it would be soul-destroying to my wellbeing.

    The other option, which I will probably take, is to refuse the test and therefore get sacked from work due to not doing my job adequately. This would compound my poor self esteem and less money. I also have some permanent physical problems which prevent me from socializing.

    Any ideas?
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,206
    Merseyside
    Welcome to TP. You'll get loads of support & advice here.

    Personally I would take the test. That way you would get medication, possibly benefits & support.
     
  3. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    Now that the doctor has suggested that you might have dementia, the worry is surely not just going to go away. Your GP sounds pro-active so if you do decide to get tested it seems as if you will get the support you need if dementia is diagnosed. If dementia is ruled out then you can push for tests to find out what else might be causing your problems.

    As you know, there are drugs which slow the progression for some people - and researchers are working on finding a cure all the time. Please don't deny yourself the chance to get treatment while you are still young enough and well enough to enjoy many more years of living well.

    If you can afford to accept an early retirement offer that's great as you will have time to enjoy doing new things, and you might make some new friends. You could also maybe do some part-time voluntary work?

    I'm sorry you have this worry hanging over you. Best wishes, whatever you decide.
     
  4. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    333
    rct
    Hi!..well done for using talkingpoint firstly. I assume your gp has done blood test to rule out vitamin difficiency or infection??

    I care for my father who wanted to know because he needed to know what was making him feel and act like he did. Im not saying we werent devasted ..but the time we wouldve spent not knowing is spent making the absolute most of every day.
    He has medication it help a small % but i ll take that any day. The activities we attend run by the society are inspiring. .even the officers coming to the house made a difference to my dad and our family!

    We are all individuals and you know you best..but sometimes its easier to be strong by being angry with something with a name . Its totally your decision . Knowing my dads type of dementia meant i could research how to help him.

    The reason for testing for dementia is also to rule it out equally as to rule it in...
    Regardless of your decisions we all on tp accept we wont always agree and might have different views.. but we are always listening if not typing.
    Best wishes


    Sent from my GT-I9505 using Talking Point mobile app
     
  5. Lawson58

    Lawson58 Registered User

    So sorry to read your story.

    Someone should have explained to you that a diagnosis of any form of dementia should never be made on the basis of a short memory test on its own. And not all people with dementia do badly on the test. There should be a number of other things done before doctors make a final diagnosis. And there are several other reasons out there that could be causing you memory problems apart from dementia.

    My OH has been diagnosed with Alzheimer's and always does well on the memory test. He is still playing bridge regularly though it does tire him. He still has a fair degree of independence and at the moment his other health issues are of much greater concern.

    His medication has helped enormously and most of his bridge friends have no idea that he had Alzheimer's.

    Your reluctance to eventually get a diagnosis is totally understandable and I believe that most sufferers live in total denial about their illness even after years of living with the disease.

    You might find it helpful to talk to someone from Alzheimer's Organisaton before you make any decision. Many people live good lives for many years though I know from what you hear and read there are a few horror stories out there.

    Take your time in making your decision if that's possible and let us know how you get on.
     
  6. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,780
    Salford
    Hi Oberek, welcome to TP
    This is just plain stupid of your doctor to say "doctor has suggested I should take a memory test to diagnose whether I have dementia" a memory test is just that and you can't be diagnosed with AZ from a memory test, that's just the start of a long process.
    The earlier you do something the more it will help, refusing the test means you're refusing the treatment too. I'm here with a wife diagnosed a few years ago and without the right medication god knows where we'd be now.
    The issues with your memory may be down to a lot of things and they need to be looked into, you need blood tests to see if it's not a vitamin deficiency, thyroid or something then you need a brain scan to rule out other issues within the brain itself.
    Even IF and it is a big IF it was some form of AZ then that isn't the end but denying yourself treatment isn't the answer. "Failing to plan is planning to fail" as they say you really need to find out what the situation is then plan from there, in the long term dodging a diagnosis (if that's what happens, might be, might not) could be a really bad move.
    Sorry if that all sounds a bit harsh it's not meant to I'm really quite a nice guy but you do need to start the ball rolling so you know what you're dealing with, if god forbid it is AZ then you can plan things out in your own way rather than leaving it to the fates and hoping for the best. Sorry again, I really do sound bad, but head in the sand is the worst thing you can do right now.
    Sorry for being so passionate about it.
    K
     
  7. oberek321

    oberek321 Registered User

    Jun 4, 2015
    4
    Thanks for replying - I am grateful to discuss this anonymously.

    I understand the benefits and disadvantages of taking a test to see what is happening and have been thinking long and hard about it. Please respect my point of view, as I respect and appreciate you contacting me.

    If I knew I had a diagnosis of dementia I would feel even more devastated and would not want to live. I need to keep some hope! At least I would not have it in my mind all the time if I did not get tested.

    As a secondary concern I am terrified of needles, injections and hospitals. My GP says the only way to be tested would be with tests and needles in a Memory Clinic. I am too frightened to do this - have done nothing about it for decades. Medical personnel are busy and find anxious patients time-consuming, difficult and annoying. I am so ashamed and frightened - other people seem to manage. My GP arranged a course of psychotherapy some time ago but it did not help. I have not told anyone this before.

    I am alone without friends, family or support apart from one busy friend. I would not manage if I had a diagnosis of dementia waiting to happen. In time I would have to have strangers caring for me, and little or no autonomy as I deteriorated, with nobody giving me care or affection unless they were paid to do so. Knowing I had Alzheimers would be a slow death of my mind, body and spirit would be in my thoughts continuously. This is why I do not want to take the test.

    Apologies for feeling so sorry for myself - I know there are people much, much worse than my situation.

    Please be gentle with me in your posts - I am already crying just from thinking about it. I feel so alone.
     
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Dear friend, Im sorry you feel so alone. I think calling one of the dementia helplines would be a very good idea. They can tell you what the tests would be, instead of imagining them. You can then decide what you want to do. I have called them many times as I care for my Mum.

    We wont judge you here. We will listen and support. Im just sorry I cannot do more to support you. Sending you a hug for strength. Love quilty

    From alzheimers website
    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.
    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday
     
  9. oberek321

    oberek321 Registered User

    Jun 4, 2015
    4
    Thanks for replying - I am grateful to discuss this anonymously.

    I understand the benefits and disadvantages of taking a test to see what is happening and have been thinking long and hard about it. Please respect my point of view, as I respect and appreciate you contacting me.

    If I knew I had a diagnosis of dementia I would feel even more devastated and would not want to live. I need to keep some hope! At least I would not have it in my mind all the time if I did not get tested.

    As a secondary concern I am terrified of needles, injections and hospitals. My GP says the only way to be tested would be with tests and needles in a Memory Clinic. I am too frightened to do this - have done nothing about it for decades. Medical personnel are busy and find anxious patients time-consuming, difficult and annoying. I am so ashamed and frightened - other people seem to manage. My GP arranged a course of psychotherapy some time ago but it did not help. I have not told anyone this before.

    I am alone without friends, family or support apart from one busy friend. I would not manage if I had a diagnosis of dementia waiting to happen. In time I would have to have strangers caring for me, and little or no autonomy as I deteriorated, with nobody giving me care or affection unless they were paid to do so. Knowing I had Alzheimers would be a slow death of my mind, body and spirit would be in my thoughts continuously. This is why I do not want to take the test.

    Apologies for feeling so sorry for myself - I know there are people much, much worse than my situation.

    Please be gentle with me in your posts - I am already crying just from thinking about it. I feel so alone.
     

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