1. hilsnotlaw

    hilsnotlaw Registered User

    Jan 13, 2009
    7
    Leeds
    Hi, my name is Hilary and my mum (aged 80) was diagnosed with Alzheimers last year. My brothers and I noticed mum was getting forgetful about three years ago. When she said she didnt know her brother had died, we knew something was really wrong. She has always been a very independent woman and didnt want to bother her doctor, so we had to go behind her back and get the doctor to visit her (as he was passing!!). The 1st memory score she got (approximately 2 years ago) was 24 out of 30. She knew herself that something wasnt right, but had said to us if she was told there was something wrong with her she would kill herself. We had to therefore not take any further action. We left things as they were for a few months until she started getting worse. She agreed to see the "memory man" as we called him and got a score of 17 out of 30 that time. She was put on Aricept in August last year and the dose was doubled in October. The latest memory score she got last week was 9 out of 30. Her specialist said it is "severe deterioration" and so took her off the medication. He said to come back in 6 months unless we need to see him before! There are many things that are so hard for us, she doesnt recognise us as being her children. Sometimes to her we are those nice people who do lots of things for her. I try to remind myself its the illness, she cant help it, but it does hurt. Seeing her go through this torture is heartbreaking. I watched the "Dispatches" programme too last night and cried when the woman said she wanted her mum back. Its how we feel. It feels like we are on our own sometimes, but reading the posts from you all is helping us so much. We're not looking forward the future, but are taking one day at a time and cherishing the good times we have with mum. Sorry this is so long and thank you for being there xx
     
  2. Annoula

    Annoula Registered User

    Dec 4, 2008
    155
    Greece
    Welcome Hilary!

    it is awful to see such a deterioration to your beloved mother. and the role reversal feels pretty bad.

    but we have to go on.

    keep strong and take good care of yourself!
     
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,193
    Toronto, Canada
    I know exactly how you feel. It sounds like you've had a wonderful relationship with your mother, which makes it so hard. There are others who did not have good relationships with their parents and yet cared for them nonetheless. I don't know which is more difficult but for myself, I'm glad I have the good times to look back to, heartbreaking as it can be at times.

    Is your mother in care now? Her disease seems to have progressed very quickly in comparison to others.

    Keep us posted. Good luck.
     
  4. hilsnotlaw

    hilsnotlaw Registered User

    Jan 13, 2009
    7
    Leeds
    Hi
    Mum still lives on her own (but has an old dog for company). She cant remember how to use most things in the house now (apart from the washing machine and kettle!).She has meals on wheels five times a week, my brother and I see her four times a week and speak with her every day.I know the time will come when she will need to be in a nursing home for her own safety, but how do we live with the guilt of having failed her? She told us years ago when her in-law were in a nuring home not to put her in a home. She cared for us and gave us everything she possibly could when we were growing up, its our turn now and we will do everything we can to keep her safely at home for a long as possible. xx
     
  5. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    Hello hilsnotlaw

    Welcome to TP, here you will find a lot of support and people who can relate to the journey that you are on with your Mum, i am so sorry for you, it is heartbreaking to see your Mum go down hill rapidly and at time you will feel useless as there is not a thing you can do to stop this awful illness. I was tald my Mum had AD about 20 months ago and like your Mum she was put on Aricept and was taken off it 8 weeks later as there was no improvement, I have had to put her in a care home and will for the rest of my life live with the guilt of having done so as i always promised her that i would never do it, i know deep down that she is in the best place and getting the 24/7 care she needs. You will have good days and bad days, like you said you have got to cherish the good days and moments you have with her as they become less and less as the illness progresses. I too want my Mum back as she was but i know that will never happen, you lose that person twice over in the end.
    I wish you well on your journey, sending losts of love and hugs, keep strong.

    Laylabud.
    XX
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,193
    Toronto, Canada
    Too many people make rash promises not to put their loved ones in care later in life. At the time, it seems obvious that we would never need to do that. It's a much different case years on dealing with full-blown dementia.

    Laylabud, please try to let go of the guilt. The only thing you are guilty of is trying to take care of your mother in the best way possible.

    You do know she's in the best place and you must learn to knock that Guilt Monster off your shoulder.

    Hilary, it's not failing her if eventually your mother goes into care.

    Failing her would be keeping her in her home when she is at risk of falling, eating poison or food that's gone off, wandering out in cold weather improperly dressed, wandering out into a road and getting hit by a car - I could go on and on.

    I know we never entirely get over the guilt - my mother has been in care since January 2001. I still get the odd twinge but it does pass. I look at it realistically and know I cannot provide the care she needs. I have tried to do the best I could. It may not be as much as others, but then again it may be more than some others. We can only do what we can do.

    Please, both of you, realize that dementia is a huge disease to deal with that nearly everyone can't deal with at home, much as we would like to.
     

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