Alzheimer is a mental raping

Discussion in 'ARCHIVE FORUM: Support discussions' started by jayjayb, Apr 29, 2006.

  1. jayjayb

    jayjayb Registered User

    Apr 28, 2006
    6
    Kansas City
    I have been caring for my mother for 8 years. She is at the stage of force feeding and does not converse anymore, not even the embellishing that is so familiar. I left my job years ago because my employer was constantly leaning on me about FMLA. Oh it is against the law but they can do it so smoothly that you are not aware until it is all over you:) I started my own home business to compensate and the pressure to perform and to care for a love one is still there.
    I miss my mother very much and sometime I sit up (my sense of humor keeps me afloat) and say "What did you do with my mother?" My mother replies "I don't know". It have been a long 8 years. I have lost friends, family and jobs. I have 5 siblings that state they can not handle it. So I have. I have stopped being angry with them because it took so much energy and thinking. It was killing me. Last night I got upset with my mother because she was scared of me. She cried and I did too. Today she knows me so I'm all right again. I am the only one that she knows. My advice to anyone dealing with the first stages of Alz's is to sit down and get all the information you can about family history, their feelings about certain events that have taken place and that will take place. Sit down, calm down and adjust your seat belt. You are in for the ride of your life and your love ones life.
    Signed: Getting some of the pain out.
     
  2. sophia

    sophia Registered User

    Apr 20, 2006
    21
    Fmla?

    Hi Jayjayb - I'm fairly new and appreciate the advice. My mum was diagnosed a year ago and when I phoned the local AD helpline the lovely volunteer I now know rather well said " It's a whole new world" . It sure is. You are further down the path / journey / chamber of horrors than me I know, but I want to say , you're in the USA I'm in the UK, we don't know each other, but we sort of do, because who else understands what all this feels like? We do understand each other. It can be a long ride you're telling me. And to relax. Ioften think I must pace myself and try and let some stuff float above me, and not respond to everything like it's a calamity. And know that tomorrow is another day. To get through and try and win through! We are about to buy house with annexe for mum. But will have help coming in too, and I am about tostart work part time, instead of fulltime as before. What's FMLA? It is not a family friendly working environment sensitive to carers I'm guessing! You sound like you have been through so much and not had any support from anywhere much. Well here is some moral support at least. You have achieved so much by the sounds of it. Got over many hurdles, and kept your sense of humour. Kept your mum going all this time. Kept a livelihood. Reinvented yourself, held everything together. Managed. Managing. It's essential to let off steam. Carry on! x
     
  3. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi JayJayB,
    You are SO wise in the above logic. There's no point in stressing about things you cannot change, you just add to your own frustration & difficulties by wasting time thinking about it. As you said, it's a rough ride, and a long one for you at 8 years.
    I was going to say "congratulations on staying the course" but it's not exactly the kind of achievement you want to celebrate, is it!
    I'm sure you know, but I'll say it anyway; Your Mum (the real one, pre-AD) must be SO proud of you.

    Best wishes
     
  4. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Jay Jay,
    We are neighboors. My Mom is in advanced stage as well but still lives at home with my step Dad down the street. I also am the only sibling caring for my folks out of six! They come around for a few hours and high tail it back to Texas saying, " wow, so glad your here to take care of them Debbie" I say bye bye and hope you have a flat on the way home. ( not really, just fun to say that)
    We got a call last night from Mom. She was paniced because she said a neighboor was in the house and she couldn't find Ed ( her husband). We ran over because they have called upon a neighboor to help out before and my step Dad has been in and out of the hospital the last couple months. But, she just didn't recognize hiim, thought him a strange neighboor and also thought he had hurt "her Ed". Took a couple hours to settle her down and finally we were able to leave. This morning it is as if it never happened.
    I gave up my career last year but cannot look for a job since this is now my job. I"m trying to do some things from home as well but it is hard to make it successful when it is at the bottom of my priority list. But, this won't last forever and I know I am doing the right thing and honestly wouldn't have it any other way.
    It's a whole new world alright, like a bad episode of the Twilite Zone!
    Take care,
    Debbie
     
  5. jayjayb

    jayjayb Registered User

    Apr 28, 2006
    6
    Kansas City
    The Storm Has Passed Over

    Hello everyone. I have not posted anything because I was trying to be with my Mom as much as possible in her final days. She passed very peacefully June 18th in my home. The final days were as if God lifted the film from my mother's mind and let her have a clear day. She told me she was tired and worn out. Two days before she passed she reached out and cupped my face in her hands. She could not talk at this point but the caress was felt deep within my soul. My mother has won the battle against Alzheimer Disease. This the only way to win the struggle against it. I hope that someone somewhere who has a love one with the Disease gets the blessing of a cure for the "Mental Raping Disease" The thief of our love ones. Pray for me and I will lift you all up in your struggle. God Bless.

    jayjayb
    "When you rejoice in your heart despite the hardships
    you're facing - that's the alabaster box of praise."
     
  6. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya JayJayB,
    Sorry to hear about your mother's death, but as you say she has beaten Alzheimers now. That clear day was such a gift - for you to know that you were known and cherished, and for your mother to know the same.
    You are in my thoughts and prayers.
    Love,
    Helen
     
  7. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    JayJay,
    I am so sorry for you loss but happy that your Mom is in a better place and free of dimentia. Take care and God Bless.
    Debbie
     
  8. jeannette

    jeannette Registered User

    Feb 27, 2006
    55
    peace

    Dear JayJay,
    I'm so very sorry that you have lost your mother, but so glad, as the others, that you had those very special clear moments with her at the end.
    You seem, to me, to have been heroic: the most wonderfully loving of daughters. Your mother was desperately unlucky to have AD, but blessed to have you.
    All the best for your future.
    Jeannette
     
  9. Maggie

    Maggie Registered User

    I am also sorry to hear about your mother
     
  10. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    I'm very sorry to hear about your mum.....I'm thinking of you
    Wendy
    x
     
  11. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    How we were.

    I have come to the conclusion that Alzheimers is a very painful disease. The sufferer has the disease and the carer has the pain.
    May you find peace in the future and remember your Mum as the loving person she was.
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Jayjay, thinking of you at this time. Look after yourself now, love
     
  13. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Dear JayJay

    I'm sorry your mother has passed from this world, but pleased she is now free from AD, and that you and she had that precious time together at the end of that hard journey.

    God Bless
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,732
    Kent
    The Storm has passed over.

    Dear Jayjay

    The tears fell when I read of the passing of your mother. Even though I will never know you or her, we share the pain of Alzheimers.
    I really can say I know how both you and your mother have suffered, each of you in your own way, and I hope you will find consolation in knowing your mother is free from suffering now, and at peace.
    You must take heart in the knowledge that you have been a wonderful daughter and gave all you could to your mother in her final years.
    Try to start to live now, Jayjay.
    With love Grannie G
     
  15. jayjayb

    jayjayb Registered User

    Apr 28, 2006
    6
    Kansas City
    Touching Bases

    Hi everyone:) Just wanted to let you know how things are going since my Mom won the battle with Alzheimer's. I still have my Alzheimer Day Care and it is my passion now to help the clients and the families affected. Mrs. P. (I will call her) has been with me through the last year of taking care of Mom. Mrs. P's Alz has progressed but she knows who I am and constantly wants to help me. She stand at my mother's room but does not know why she stands there. She is frightened by her children moving her around and I try to comfort her by telling her that they all love her and they're trying work. They are having a lot of the problems I had at first and I try to assure them that they will get through it. It would definitely be lying to tell them that it gets better because I see the deterioration each month.

    I have another one that is unpredictable. One day she loves me and I can't get away from her:) and the next day she is quiet and combative. But this passes too. When I got her she did not talk as if she was aphasic......not now!! She ask the other ladies around the activity table if she could help them and the room became quiet as a mouse before everyone burst out with "Mrs. V. can talk!!!! It was a tear jerking moment for her daughter when she picked her up.

    I try my darness to apply all the techniques that worked for me. They do not always work for others because every sufferer is different. Sometime I think that my mother "Gracie" is guiding my feet, her a the Lord:)

    Yesterday was my mother's Birthday. I got through it and I am getting better with each day. I still beat myself up for getting angry at the disease and my mom. I still wonder if I did all that could be done to make life just a little better for her. I took a lot of comfort in the article on this website about "It's alright to be angry". Frustration and lack of wisdom about the disease makes one angry. Ask God for help and mercy and you will get through it too.
    I love and miss my Mom something terrible but the joy I get when one of my people finds pleasure in just child like games and pleasures it keeps me going. That is the comforter that God sent to replace my Mom.
    I wish everyone strength and patience. It's a must have:):)

    Love today. Tomorrow is not promised.
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    What a lovely post , thanks for shareing.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,732
    Kent
    Jay, you are working through the grief for your mother by caring for others. You are an inspiration. Sylvia x
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I have also been thinking of what work I shall do after my mother passes away, I think I would love to get into working with the elderly in care home or home help , as I would find it very rewarding
     
  19. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    What a beautiful philosophy! Thanks for the post! :) Your tale of 'Mrs V' brought a tear! And well done! You have a 'qualification' that could never be measured!!!!

    Love, Karen, x
     
  20. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Some of the teachers aides (for children with special needs) whom I teach are also the parents of children with special needs. It qualifies them to work in this area in ways which are unique and extremely valuable. I think anyone who has been (or is) a TP member would be the same in the field of aged care - especially in dementia. I am in awe of those of you who can manage this is two areas of your life (both professional and personal). What very special people you are! Nell
     

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