1. chrissie52

    chrissie52 Registered User

    Nov 29, 2006
    It is almost a year since I last visited. At that time I was trying to come to terms with the way my mothers illness was developing, the effects the drugs were having on her and just generally looking for support. After a very difficult year she passed away just 10 days ago.

    What did I learn? That dementia illnesses are a terrible thing to bear, but that keeping in close contact is vital, and that no matter how hard it gets, your loved one needs your support. You will find it hard, and even "annoying, wearying and depressing" to spend so much time with your loved one, but they really do benefit (and so do you, when you look back). The drugs that are offered (at all stages) are at best "experimental" - where one side effect occus, another drug introduced to stop that effect brings it's own side effects.

    You will learn that a nursing home with a superb record of care, and with the kindest staff you could want simply cannot be with your loved one 24 hours a day, and as a result you will feel angry when inevitably things go wrong.

    My mum had lewy body dementia - a particularly bad form that caused her to lose physical and mental abilities and she spent almost 3 years unable to walk, feed herself and in the last year talk. Her records show she was treated for an anxiety disorder (the start of the dementia??) with Risperdol just over 3 years ago and that caused "risperdol induced parkinsons". We will never know if the anxiety disorder was the start of lewy body dementia or if the drug she was given caused it, but she descended from that point. The anxiety disorder seemed to be caused initially by abdominal pain - she was in and out of hospital 5 years ago but the cause was never diagnosed, and she became more and more anxious as she found it harder to cope with the pain. What caused the pain? Was it a result of an operation some 10 years before that (the scar site seemed to be the origin of the pain). These are questions that we will never know.

    The madopar drug that seemed to help, after the risperdol was withdrawn, became a prison of nightmares and hallucinations, the quetiapine given to help with those nightmares and terrible horrific visions lost her to sleep, and the rivastigmine given latterly came far far too late to help.

    However, at the end, unable to eat or drink and a with tiny thin and wasting body, she fought so hard to stay with us, so she must have loved us very much.

    It is painful now with her loss so recent, and I wish I knew why she was as ill as she was, but in time perhaps the pain will lessen. Our faith in God and heaven above is all that has kept us going, she is released now and her spirit is free in heaven.
  2. connie

    connie Registered User

    Mar 7, 2004
    Dear chrissie, thank you for sharing your thoughts on your mum's final year with us.

    You are to be commended for looking after her needs so well.

    I am sorry to read of her death so recently. I will just repeat you own words back to you. - such comfort.

    God bless, Connie.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Chrissie,

    Please accept my sincere condolences on the death of your mother.

    I`m sorry you had such a bad year and hope your mother didn`t suffer as much as you did.

    I trust it will be some consolation for you to know your mother, at least, is at peace.

    Love xx
  4. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Chrissie,
    I send to you and your family my deepest condolences with your lost of your Mother. Unfortunately as there is no cure and Doctors cannot tell us the when and Why it is another learning path for us all. As my husband is in the final stage, I dread the phone going. It is so painful watching our loved ones go through this herrendous illness.
    Take care of yourself. Best wishes. Christine
  5. nickyd

    nickyd Registered User

    Oct 20, 2007
    Feel for you, Chrissie x

    Dear Chrissie,
    I am so, very to hear about the recent loss of your Dear Mum. Your story sounded a bit similar to mine, pain never being diagnosed, medication being chopped and changed, causing terrible side effects and epilepsy, and then the awful, final loss of the ability to swallow,and her fighting to stay with us.
    It's been 12 wks for us and it is still sooo.. raw. I wish I could believe that Mum is in Heaven, I truly do, I would love a little sign from her, to let me know shes fine and watching over us. I'm sure you will find the strength to get through this sad time as I have.
    Sending heartfelt condolences, Love Nickyxxx
  6. chrissie52

    chrissie52 Registered User

    Nov 29, 2006

    Thanks to all of you for replying, I hope that you all get peace from the pain you also have been through.

    God Bless

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