feeling unable to cope sometimes

Discussion in 'ARCHIVE FORUM: Support discussions' started by Amanda, Jul 13, 2004.

  1. Amanda

    Amanda Registered User

    Jul 13, 2004
    9
    Newbury
    My mum is 54 and has been ill for 5 years. She has been diagnosed with dementia but they're not sure what type yet.
    Just recently my mum hasn't wanted to come and see me. She has lost all of her confidence. I'm finding it really difficult at the moment as I miss her. I'm 26 and I've got 3 children and just want my 'old' mum back for a while. I feel really selfish as I know that it's her illness thats making her distant but it's hard to accept. I need to know that I'm not the only one that feels like this. Can anyone offer some advice? Thanks
     
  2. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    Hi Amanda
    I certainly do know how you feel and you're not alone.
    Dad has been really ill since 1998 now (he's had dementia for 9 years). He is older than your mum, but that doesn't make me miss him any less.

    I miss our chats, our trips down the pub, lots of things we used to do, much of it I can't remember now as I have a new relationship with Dad at the moment. It's very different from when he was well, but can still bring me great happiness at times. After all, he's still my Dad.

    It's ever changing and must be hard for your right now especially since she doesn't feel like coming to see you. I hope that her feeling like this is only temporary and she will want to come and see you soon.

    This disease is so hard to accpet, but try and take one day at a time. This forum has been a great help me me and many others. Keep talking to us.

    Thinking of you Amanda.
    Karen.x
     
  3. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    Hi Amanda,

    It's so had coping with this illness and these feelings hit us all sometimes. You forge a long coping with the practicalities of the illness and juggling your own life (especially with three kids). Now and again it's like someone hits me with a plank of wood and all my emotions bubble up, just can't help thinking WHY DAD!! Luckily these moments pass. I have just the one child but she loves spending time with grandad even if he's a little fickle sometimes. In fact she loves that part of him and helps us dress dad, finding the right shoes and keeping it all light hearted, its wonderful to watch sometimes.

    In our case seeing dad as often as possible helps all of us. Is there no way you can visit your mum or is it just more practical for her to visit you? I know my dad finds it had to come to our house now as it all a bit busy for him here. He needs his space as the normal pace of life makes him aggitated. Perhaps you could ask her if she would like her own space when she visits or try and find out what is worrying her.....

    Glad you've found this forum, it's good to talk!!

    Regards
    Charlie....
     
  4. Jude

    Jude Registered User

    Dear Amanda,

    Don't let your mum's unwillingness to visit you get you down. She may be becoming agrophobic and pretty scared about going away from her familiar territory, which is all part of the dementia.

    Try and keep in touch with regular telephone calls and if you think that she isn't remembering that you are actually ringing her, perhaps you can write to her regularly too. That way she has something to read and hold on to - just a short note or a card would be enough to let her know that you care.

    Obviously it's going to be really difficult for you with 3 children and a busy lifestyle, but can you visit her? That's if you aren't too far away?

    Perhaps you could also telephone her friends and explain the situation to them so that they could call in and see her too.

    Best wishes

    Jude
     
  5. Kerry-Jane

    Kerry-Jane Registered User

    Feb 9, 2004
    25
    Surrey
    Hi Amanda

    You don't say if your Mum is on any type of treatments for her dementia. My mum was seemingly very depressed before she got her diagnoses of vascular dementia. When her drug treatments were changed there was a small but noticeable difference in her attitude. She went from complete non-cooperation around the house to actually taking an interest in helping and her conversational involvement increased as well. Of course I am not saying that her involvement is particularly helpful (dirty plates put back in the cupboard). So perhaps this is something that might be worth looking into - it won't be a cure, but it may help somewhat.
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Amanda

    Dementia is always tragic, but it seems especially so when the sufferer is young, because they and their family will always have expected so much more out of a young life.

    You say "Just recently my mum hasn't wanted to come and see me" .

    I've become accustomed to analysing almost everything since my wife - also a younger person - came down with dementia. At the risk of sounding overly analytical, if we look at what you said, we can probably interpret it as "just recently my mum hasn't felt capable to make the journey to come and see me".

    For a person with dementia, the world becomes a very frightening place, where suddenly nothing seems reliable, or normal. It is a combination of the person feeling that everyone else has gone mad, and of the person being scared stiff that it may be a problem with their own health. Things that were once simple - using cutlery or using a phone - suddenly are hugely complex. Words get mixed up. Even walking becomes a problem.

    I'm sure there is also an element of a sufferer thinking that what they have may be in some way contagious, so that they wish to protect their family by isolating themselves.

    So we look at the way someone with dementia behaves and we try to work out the best way to try and help them. I have also spent a lot of time trying to put myself in the position of my wife, to understand exactly what she is experiencing, because my first attempts to help her were way off beam as I was misinterpreting all sorts of problems.

    We need time to learn.

    Actually, I am helped by the fact that I occasionally have very severe migraines. During an attack, my sight is impaired, my speech goes really weird [all the wrong words, in the wrong order! First time it happened I was in a pub and everyone thought I was totally slewed]. Because my sight goes, my walking becomes erratic, and so on. On some occasions I have been stranded in the country, unable to drive home.

    So I understand the vulnerability. I am aided of course by knowing it will pass, which is not true of dementia.

    Advice?

    Well, first of all, you will probably get your old mum back from time to time - at least at the moment. It can wax and wane.

    The more you can get to see her, the more chance you have of coinciding with a return of her old self. The reverse also applies - the less you see of her, the less chance.

    You don't say how far away you live from her. It may simply not be possible for you to visit very regularly. Your mum may be at a stage where nothing you can do will help - that may pass.

    Over time she will change, and if you can, change with her. Don't expect the old mum all the time. Learn to be as comfortable as you can be with this.

    Don't forget to take your children to see her when you can. They need to be building some memories, and children are amazingly accepting of people with dementia - possibly because they are so similar in many ways.

    Best wishes
     
  7. Jude

    Jude Registered User

    Dear Amanda,

    There's a book called 'Altheimers, Finding the Words' which may help you to communicate with your mother. In this, the author talks about 'word blindness' and the need to define new language structures.

    Author is Harriet Hodgson, Publisher Chronimed, ISBN No 156561-071-7. You may find this useful.

    Jude
     
  8. naomi

    naomi Registered User

    Jul 8, 2004
    13
    my mum

    hi Amanda.my mum was my best friend and I am losing her to Alziemers.I miss the chats we had and she is so different now.I get very sad but have a lovely partner and an eight month old baby and that helps.My mum would be so sad if she had known she would have Alziemers.She has no interest in my little girl.The worst time was when she started changing It was heart breaking for all the family.I now cope better and feel I am accepting the mum now as she is.She was always a dignified lady.She is now incontintent.Keep your chin up.You have your memories of what your mum used to be like.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Naomi

    There's so much negative stuff around, but let us all remember also the positive! If we don't remember that, it all becomes just too yuk!!!!

    You say "I now cope better and feel I am accepting the mum now as she is ."

    That is so important, both for you, and for her.

    Yes, of course your Mum would be devastated to know how things turned out. Fortunately, after a certain stage, sufferers appear to lose that knowledge and as they do, we lose them, at least as they were. But they become a different, though still in many respects, familiar, person. If we can accept that and build a new relationship on that basis, then we have something positive. And they have us, still.

    You also say "but have a lovely partner and an eight month old baby and that helps ".

    YES!! Thanks goodness for supportive partners, family and friends. It is not even slightly easy for them, but those who stick by us deserve a huge hug.

    "You have your memories of what your mum used to be like. "

    As do we all, and they still live on through those memories. You can pass that on to your baby, and your Mum will live on, as she was - even as she is because these people deserve recognition for the effort they put into being as normal as they can be, under severe difficulties. If there was a Victoria Cross that applied, they would all get one.

    Footnote: she was your best friend. You are returning the compliment under awful circumstances. Be proud of that, Amanda, Karen, Kerry-Jane, Charlie, Jude, etc.

    Postscript: Also, thank goodness for the many people who contribute to Talking Point, I can't say how impressed I am by this community of friends who have never met, yet know each other quite well, and have so many things in common!
     
  10. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    Thanks for those words. Had one of the most upsetting visits with Dad yesterday and your post brought tears to my eyes.
    Thanks Bruce
     
  11. Jude

    Jude Registered User

    Dear All,

    My thanks to Bruce too.

    Some days it's only being able to use this website that keeps me sane....! It's my lifeline to the outside world. I sometimes feel that living with the oldies is like being locked up in jail, with no time off for good behaviour! BUT at least I have my other life to look forward to in Bali, which is a great deal more than many carers have, so I am incredibly lucky in that respect.

    Jude
     
  12. janey

    janey Registered User

    Jun 29, 2004
    86
    I wish my Mum didn't realise

    Hi Bruce
    you recently said that '...Mum would be devastated to know how things turned out. Fortunately, after a certain stage, sufferers appear to lose that knowledge'
    My Mum has vascular dementia (as does Jan, along with Alzheimers, I think?) and the most awful aspect of her illness is that even now she remains completely aware that she's ill, even though she's now been suffering from vascular dementia for at least 10 years to our knowledge. During the periods when she is able to speak coherently she constantly asks 'what's happened', 'what's wrong with me?', and slaps herself on the head (realising that the illness is to do with her head), and apologises to us all. Seeing her anguish and her awareness that she is gradually 'losing herself' is the most heart-rending part of this experience, much harder to bear than our own pain at 'losing' her. I hope with all my heart that the day really will come when she no longer knows what is happening - its just too cruel.
    Sorry - this is totally negative, but if anyone with experience/knowledge of vascular dementia can help I'd be very grateful to hear from you...
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Because the brain is so complex an organism, and the dementias attack it in a random fashion, everyone's experience is different as different parts get hit.

    Jan has a combination of Alzheimer's and vascular, we have been told. She does say from time to time "It's horrible" but I just don't develop that thought, it would be too upsetting. Instead I simply agree with her and then try and steer her onto things she is happier about - as far as I am able to tell.

    Jan also apologises for herself, but it all doesn't make her really unhappy - as far as I can tell....
     
  14. janey

    janey Registered User

    Jun 29, 2004
    86
    Thanks for your thoughts Bruce. At the end of the day, I know its pointless to 'wish' - the only possible course for all of us is to accept the ever-changing situation, live from day to day (as Norman says) and do our very best to be happy and to keep Mum happy too if we can. But it does help to let off steam sometimes, as in my last post!
     

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