1. lisaw

    lisaw Registered User

    Nov 22, 2004
    18
    Southampton
    Hello,

    My mum started showing signs of Alzheimer's at the age of about 45. Now 13 years later she is what I imagine is the late stages, however all her other organs are healthy as ever so we suspect quite a few more years for her.

    I am 26 next month, and just lately I have been doing the sort of things my mum did in her early days. I have forgotten to put the detergent tablets in the washing machine and washed the clothes. I am forgetting to do things at work, like ring a customer back after sorting out their issue, and yesterday I left the burner on the stove on and went to work, my fiance noticed it on when we got home and the t-towel just a few inches away! I am not sure what to do or think of these recent events. With my mum we put her forgetfulness down to menopause, getting old etc which delayed diagnosis.
    I am normally a very organised person with everything in order, and lately things seem to be flustering me. Should I put it down to a series of mishaps and ignore it or go to the doctor? I feel a bit silly about the whole thing. Would really appreciate your advise.

    Lisa
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Lisa

    When someone we love has dementia [or any really nasty condition of health] it is an enormous mental drain on us. Even when not consciously thinking about them, our brains are chugging away in the background doing it unconsciously.

    Most likely, your thoughts are being spread too thinly, and on too many things. You are 13 years in, don't forget.

    Anyone who has been touched by dementia in a loved one fears they are going the same way as soon as they forget something.

    I do it all the time. Names, where I have put things, if I have done things, if I have done things differently from usual etc.

    I'm just too preoccupied with too many things. Stretched too thinly, and as one gets older, one can't do that stretching as well. Can't juggle so many balls at once.

    To set your mind at rest, do by all means see your GP, but I am sure it will be the effects of an overworked mind.

    Best wishes
     
  3. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Lisa
    That would have made you 13 years old when your Mum first started having problems. How old were you when she was actually diagnosed with dementia and how did you cope? I ask because I have recently been diagnosed and my daughter is 17 and I worry about how she is going to cope with this.
    Jeanette
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Jeanette

    welcome from afar!

    I'll pitch into your last post though I don't fit the criteria!

    I was 43 when we first realised that Jan [50 then] was not well. We had no children.

    However - and I know it is weird - but over the years as her condition deteriorated, I kind of regressed myself. I was 18 when we first met and found myself in a strange way returned to that age as I felt I was losing her. Certainly my diet went that way... all cokes and burgers, when before I had been cooking poulet bonne femme, Dover sole, etc for us [Jan was pastry and roasts cook, while I majored on desserts and poultry/fish.. a partnership].

    The greatest help for me was to be able to record jointly what we did from day to day from the time I felt I should do that. I bought my first digital camera for that purpose, and each day we would print off what we had done and re-live it. If we went to a cafe and had a nice cake, boy, I'd photograph it! So, the nuts and bolts of normal life.

    Now Jan is in her care home and beyond being able to appreciate or even see these things, they serve as a memory of sad, yet still times when we were happy together.

    Doing something positive in what is a rather negative situation does help.
     
  5. lisaw

    lisaw Registered User

    Nov 22, 2004
    18
    Southampton
    Hi Jeannette

    Sorry to hear of your condition. My mum was not actually diagnosed until 7 years later when I was 20. It is difficult to say how I took it because we suspected it anyway, it may have been more of a relief to know exactly what we were dealing with because before they were treating her for menopause, depression, thyroids (not sure if that is the name). I feel terribly guilty for the way I behaved through the years. I love my mum more than anything in the world, but when I was 13-14 and my friends came around, she would ask them the same questions about 3 times in 2 minutes which they found most bizarre, I used to say "oh she is very forgetful". But as she got worse with little things, like offering them biscuits etc and then forgetting to give it to them or putting her t-shirt on inside out I stopped having friends around. By the time I was 15 I used to be so embarassed when we went out as a family because I would have to take her to the toilets in restaurants or wherever and go to the cubicle with her, people who were by the sinks could probably her me explaining behind the door how to pull her underpants up and then see a teenager and what looks like a perfectly normal grown woman coming out a very small cubicle. We always got funny looks. My mum would always smile at me. What I would give now to be able to take her to the toilet and see that same smile. As the years went by my father and I became her only carers, we were both at home 24/7 or out with her on "outings". I did not have much time for my friends, they all went on to do A levels and university but I couldn't, I don't regret it for one minute though. I always just explained to people that my mum was ill, I did not have a name at that stage to call it by anything. Unfortuately I did not know the symptons and what happened next else I would have done so much more. The only advise I can give is that your daughter make a scrap book for the both of you. Take lots of photos and diarise the events for you both to look back on later on. She will be able to explain to you later on what you did and refer to the photos. There is a book called the 36 hour day which was very helpful for me, it helped me to understand what to expect from my mum, I really recommend that book. It was easier for me to have patience with my mum once I understood what was happening to her.

    I hope this helps... good luck

    Lisa x
    PS - it might be an idea for your daughter to have a look at this website and maybe even join talking point.
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Lisa says PS - it might be an idea for your daughter to have a look at this website and maybe even join talking point.

    what a fantastic idea!

    as far as I can see we have very few very much younger people on TP and I think it would be very helpful to all of us to see these dementia challenges from every perspective.

    if we find we have a growing community of early 20's/teenage members, we can start a new section for them.

    it can help them also in that they can understand that they are not alone, and also that they are helping others as well as themselves.

    Do please suggest to your daughter that she at least has a look at TP....
     
  7. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Dear Lisa

    After helping out your mum so much over the past 13 years it's not surprising that you are on the look out for symptoms, but I agree totally with Brucie; too many thoughts lead you to forget everyday things. Stress can do wierd things to our memories, and loved ones are never really out of our minds even if we try really hard!!!

    Perhaps it is your body's way of telling you that you need to relax? I know that it is tempting to try and do everything all of the time, but never forget humans are not robots, there are limits.

    Take care of yourself, Love Kate x. :)
     
  8. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Yes Lisa, stress plays terrible games on your memory. I often wonder whether I am in the situation I am in now because I have led a very stressful life. In fact I always thought I thrived on large amounts of stress. I had been self employed most of my adult life and have always sought out the most stressful paths in life.

    If I could turn back the clock I would look after my mind and body a lot better by taking time out to relax and perhaps taking up meditation which has been proven to be of benefit by numerous research.

    There is also what is called Pseudo-dementia which can be bought on by depression. It mimics actual organic dementia in every way but is reversible after treatment with anti depressants. So if you feel there is a chance you may be depressed go see your doctor and get it checked out....after all you have been through so much in your short life.
    Take care
    Jeanette
     
  9. Jo D

    Jo D Registered User

    Feb 28, 2005
    5
    Essex
    Hi Lisa!

    My God!!!!!!!! it is soooooooooo un believable to read what you have written, Your stories are exactely the same as mine and my Sisters, even down to the toilets in public places scenario! I just cant believe that you were going through the same as us!

    Our Mum was 47 when it all began. I was 21 and my Sister was 18 and we battled to look after ourselves and Mum without any knowledge of this awful illness.

    Six years on and with enough stories to write a book- Mum is in a home and hasn't got long to live. I miss her so very much.

    I will look out for that book you recommended and other posts from you!

    You realy shouldnt worry about your memory etc... it realy does happen to us all. I just think that because of our experience with AD we become more paronoid that other people would. Please don't let it take over your life- I've been their! you will be Ok.

    Joanne xxx
     
  10. Jo D

    Jo D Registered User

    Feb 28, 2005
    5
    Essex
    Hi- This is a message for Janette who said she was recently diognosed with the condition.

    One of the things that me and my Sister wish is that our Mum would of told us how she was feeling. She never once admitted that something was wrong and it was never discussed. We always had to guess how Mum was feeling. Is she distressed? does she know she just done that? Is she needing a cuddle or reassuring? This made it so hard for us as young adults as we were batteling with our own Mum and also with all the other stuff that needs sorting out along the way ie: Doctors, home help,banking, bills, the future.....

    I realy think as a Daughter that you should tell your Daughter how you feel and work out a way together that you can get through things. Also please please please as awful as it sounds think about stuff like your house your finances and how you would like to be treated etc... just plan much way way down the line.

    But most of all just enjoy your time together. Do loads now and enjoy every day as if its your last. Go places you have always wanted to go to, have a holiday together, spend some money on a fantastic day out shopping. I say all of this as my Mum begged me to take her on Holiday, but, being younger I never "had the time" which I live to regret now. I would also just let her know how much you love her as I'd do anything to hear my Mum tell me that!

    I realy wish you all the best and Im sure that you will be fine, its great that you are aware of your illness and are able to talk to others on here.

    Much love

    Joanne xxx
     
  11. lisaw

    lisaw Registered User

    Nov 22, 2004
    18
    Southampton
    Hi Jo,

    I just read your post and I don't know how far down the line your mum was when you say she never discussed it/admitted something was wrong or said what she was feeling etc. But with my mum she honestly did not know what she was feeling apart from confused. Anytime we asked her how she felt or what she was feeling she said confused, frustrated and scared. Whenever we asked why she did some of the things she did the same response always came out "I don't know". I think as the disease progresses they simply don't realise. I think also you don't wait for them to ask for hugs or reassurance, just give it constantly. Luckily most of the time my mum still loved cuddles. As she slowly reverted back to being like a child I used to call her pretty girl and she would blush.... bless!
     
  12. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Thanks Brucie for redirecting me back to the above message I may not have found my way back without your help.

    Thanks Joanne for your lovely message and good advice. I have some questions for you if you don't mind.

    How long had you noticed something was not right with your Mum before she sought medical help or was it her that first noticed the changes ?

    How long did it take for the doctors to diagnose her and was that quite a process as in my case?

    You say it is now six years on and she is in a home going through the final stages of this terrible disease. Is that six years from her diagnosis or six years since she/you first noticed a problem?

    Do you have a Dad who has been involved and helping you as you said you had to cope alone. I am also alone and a single parent and I am really scared as to how my girls are going to cope further down the line. They are 17 and 11 years old now.?

    Your advice re legal issues is something I have only just sorted out. My neurologist has been asking me to get my things in order for the last year but I have avoided it but I have an appointment with a lawyer next week to sort out all the issues you have raised.

    I tell my girls every day that I love them and also had an idea that I would like to record a video tape before not too long telling them how I feel about this illness, them and try and give them some part of me that in a few years they can still connect with when I no longer can. What do you think?

    My heart goes out to you and your sister, take care Jeanette :)
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Jeanette

    I'm pleased to help.

    Can I come into this conversation too? I feel a great affinity to what you are all saying.

    How long had you noticed something was not right with your Mum before she sought medical help or was it her that first noticed the changes ?

    Jan noticed the first signs, which for her were faints. Once she drew them to my attention, we went for help. Over several years she had commented on not being able to remember names, but as is common, I put that down to normal aging.

    How long did it take for the doctors to diagnose her and was that quite a process as in my case?
    8 years and it was a hell of a process. I'd figured it out after 4 years but they wouldn't listen because of her [young] age.
    You say it is now six years on and she is in a home going through the final stages of this terrible disease. Is that six years from her diagnosis or six years since she/you first noticed a problem?

    Jan started symptoms in 1991. I'd still say that Jan isn't yet into the final stages, having seen the other residents at her home who are. Jan was more or less herself until 2001, ten years into the process, though by then very troubled. Jan is still strong as an ox.
    I am also alone and a single parent and I am really scared as to how my girls are going to cope further down the line. They are 17 and 11 years old now.?
    Hey, they are YOUR children, Jeanette. They will cope because they have your genes and will have your spirit. But there are things to learn. You WILL change, and the first thing for them to learn is to renew their love for the new you that will develop over time. No point in harking back to a particular time. You will be you at all stages, you will just change a bit. Live for each day, learn your new likes and dislikes. Jan hated sugar in tea but now insists on it, etc.
    I tell my girls every day that I love them and also had an idea that I would like to record a video tape before not too long telling them how I feel about this illness, them and try and give them some part of me that in a few years they can still connect with when I no longer can. What do you think?
    You make me feel very humble! You are a fantastic Mum, and I think you are doing just the right things. Yes, record a video tape. If they have no digital camera, try and get them one so they can record the minutiae of your lives at each stage. Funny, but that [the really mundane things] is what comes to mind later, and the pictures will serve as an aide memoire. But also, why not record your own feelings [on the PC or on paper] too? My Mum died a couple of years ago from stroke, and now I treasure all the cards she sent me over the years.

    Very best wishes :)
     
  14. Jo D

    Jo D Registered User

    Feb 28, 2005
    5
    Essex
    Hi Jeanette!

    I realy don't mind answering any questions but the answers I give might not be the right ones. I don't want you take everything I say as the right thing to do. Everyone is different including the way they experience the illness. My Mum was always "different" to any body else and she has Lewy body Dementia so her AD could be different to your condition. I just don't want to alarm you or worry any one un nessasarily.

    Anyway...

    We first noticed something wasn't right about (roughly) 10 years ago. Mum just always repeated herself. Same stories, same questions, same worries: "have I locked the back door?" but of course we all do this and just used to laugh and say "for god sake Mum!" it was just Mum.

    Things started to get weirder and people started to notice. As the years went on me and my Sister just knew that something wasn't right. I spoke to my boyfriend alot about it. I knew Mum needed to see a Doctor as she was also very depressed and would cry all the time. She would get herself in such a state over loosing things like her keys etc.... also I knew things were not right at work for her as she would come home upset that people at work were picking on her. She had several "meetings" at work and then lost her job. I know now that she wasn't able to do her job properly.

    Getting Mum to th Doctors was where it all started. I would make appointment in my own name- my Sister would do the same ( we were 17 and 20 ) and the Doctor just would not help. He would not see her unless she was willing to walk in by herself. We knew this would never happen as Mum never talked about it and blamed us for confussing her.

    I had to lie to my Mum and told her I made an appointment and that I would go with her as the Doctor surgery wanted to see her to to re new her HRT. She fell for it and it kinda went from there.My Nightmare begun.

    She moved into a care home last July. But it wasn't the right one. This was aprox 6 years from the diagnosis which was when I was 21. So 10 years ago it all started, it took 2 years to get to a Doctor,a year to diaognos, and Mum lived at home with AD for 6 years.

    Our Dad! thats another story. Mum and Dad divorced when I was 8. No, he has not been there to help us at all. Now he is in our lives he knows the pain we have had but does not have a clue and distants himself as he has re married and has his own life.

    I am so glad you are going to see a lawyer. You must get power of attorney for your Daughters so later they can help you make decisions and telephone banks etc..

    I think the video is a fantastic idea!!!! I realy do.

    Your girls will be fine because you are doing all the right things now and are giving them much love. Your a star!!

    Hey, do you live in New Zealand? only I visited their 2 years ago with my boyfriend. We took 6 months out to travel. Amazing place!!!!- loads of great days out for you and your girls!!!

    Lots of love

    Joanne xxx
     
  15. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Thanks Joanne and yes Lewy Body Dementia is quite different to Alzheimers.

    There also seems to be two distinctly different paths of dementia from what I have read and spoken to many people all over the word. The first is people that are very aware that something is not quite right and can actually map their decline, a lot like me really. These people know that they are no longer functioning the way they use to.

    And then there are those who are totally oblivious to their dementia and it only gets diagnosed when those close to them push for an answer. These people seem to decline to a state where it is impossible for others to ignore their dilemma but they, themselves, have either not noticed their decline or have chosen to ignore it.

    Maybe this mirrors their approach to life in general !!!

    Jeanette
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Jeanette

    Maybe this mirrors their approach to life in general !!!

    Interesting point, and my view is that you are probably correct, though of course there are always issues of how and where the brain is affected to take into account as well.

    In life we may blame everyone else for everything that is wrong with our world, or at the other end of the scale, we may think ourselves to blame for everything, including climate. Or we may be someplace in between. Or we may just accept everything that comes along, and deal with it, without apportioning any blame. Or.... Or..... Or....

    Some people may have an academic interest in their own condition and choose to record that - it can divert their concerns by means of concentration. [in our case, I, as the carer, did that to help me as well as Jan. So often carer and cared for can benefit from choices we make]

    Some people may not want to consider anything other than living for the current day. Whatever will happen will happen anyway, so just live.

    Some people will know there's something wrong, but not feel able to accept the implications, so will carry on regardless for as long as they can.

    Some people will fear being locked in somewhere.

    Some will be more worried for their family.

    Some people will just think the world has gone barmy around them.

    etc.

    etc.

    There's a huge variety in the human condition and I think the best maxim may be "if it works for you, then that's the place to be", unless it is endangering someone.

    Just my meandering thoughts, of course....
     
  17. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Thats great Bruce.....could not have said it better myself. :)
     

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