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Re: [One Big Huntingtons Family] New Caregiver

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  • Henry Butcher
    Jesus is the only way one can persevere through such a difficult disease. My mother in law has HD and each day she gets worse. HD does not have to be the
    Message 1 of 5 , Jan 8, 2005
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      Jesus is the only way one can persevere through such a difficult disease.
      My mother in law has HD and each day she gets worse. HD does not have to be
      the HORRIBLE MONSTER it is believed to be. My focus has been on the Lord
      and his salvation. Through the hope he has given me I can face each day
      knowing that he loves each of us and he is willing to carry us through our
      struggles. we do not have to face them alone. My hope is in knowing that
      when we come before God for eternity all disease, pain and suffering will be
      removed. The ones we love that suffer with HD will be healed forever more.
      When you are faced with the point in life when you have no where else to
      turn trust me when I say there is always Jesus. Through Christ our trials
      and struggles with HD have become blessings.

      Bill ><>

      >From: "April Hynes" <thehynesfamily@...>
      >Reply-To: onebighuntingtonsfamily@yahoogroups.com
      >To: <onebighuntingtonsfamily@yahoogroups.com>
      >Subject: Re: [One Big Huntingtons Family] New Caregiver
      >Date: Tue, 14 Dec 2004 11:13:20 -0500
      >
      >Tracy,
      >
      >I'm so sorry to hear of the pain that you went through with your late
      >husband. My condolences to your family. Tracy, in your situation, you
      >would have to remove yourself for your safety as well as the safety of your
      >sons. Please do not blame yourself for leaving. I completely understand
      >your decision and guilt is not a healthy thing to carry. Especially when
      >it is unwarranted.
      >
      >It will be my prayer that your sons will be able to escape this disease.
      >Tracy, I am not strong in my own strength. It is only by the power of
      >Jesus Christ that I have a solid foundation. I can honestly say that it is
      >so wonderful to have peace in the midst of a time of trouble. It's a peace
      >that I could not live withought. To know that my life is not ruled by any
      >circumstance. I can face this disease......I may have it. My precious
      >children may too but I can tell you that when you turn your entire life to
      >Jesus Christ as your Lord and Savior that you can face something like that
      >with Peace.
      >
      >That peace only can come from knowing Jesus. If you'd like to know how to
      >receive it, send me a private email and I'll tell you. Tracy, God loves
      >you. He is there to help you face whatever may be in your path.
      >
      >But my friend, morn the loss of your husband but do not do it with a sense
      >of guilt. You didn't leave because you weren't strong. I am in an
      >entirely different situation. You can't compare what you faced to my
      >situation. But I can tell you there is hope. There is hope.
      >
      >God Bless you Tracy. --April
      > ----- Original Message -----
      > From: TRACY COTTER<mailto:tracy.cotter@...>
      > To:
      >onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogroups.com>
      > Sent: Monday, December 13, 2004 5:34 PM
      > Subject: Re: [One Big Huntingtons Family] New Caregiver
      >
      >
      > hi April
      > i have just read youre letter and i wish i had been like you are now. I
      >have 3 sons at risk my eldest is 16 and being tested after xmas. There dad
      >has the huntingtons and i had to leave 9 years ago from our marriage. I had
      >3 children 7 and under and my husband used to abuse me mentally physically
      >and sexually. I coped with this for a few years until he started hitting
      >the children then i left as i could not protect them any more. A lot of his
      >family have not spoken to me since then.
      > The family buried Rob today he was 42. for the last week since he died i
      >hsave been a complete mess , i dont know if it is guilt because i left. I
      >know it is utter sadness because the man i left was not the man i met and
      >fell head over heels in love with. Perhaps if i was stronger i would have
      >stayed and faced what life had in store for me.
      > yours
      > tracy
      >
      > April Hynes <thehynesfamily@...> wrote:
      > Dear Winn,
      >
      > I agree that we serve a strong and awsome God who can carry us thru any
      >difficult trial or illness. It's hard to see someone we loved and known
      >for years slowly start to change into a person that can often at times not
      >even resemble the "pre-HD" personality.
      >
      > I am 31 years old and I am at Risk. My Mother and her younger sister
      >(Mom is 65, Aunt is 58) have been showing symtoms for a few years. My
      >mother is mentally alert, (forgetfull though) and her personality is just
      >as loving, sweet and bright as she has been my whole Life. I adore her.
      >Just adore her.
      >
      > My Aunt however is a different story, in which I can relate to your
      >situation with your beloved wife. She was always fiercly independent,
      >confident and outgoing. She still is .......however, along with it are
      >uncharacteristic episodes or paranoia , depression, anxiety, and anger.
      >She is quick to get terribly upset and cry over something as simple as
      >going the wrong way on a road, or dealing with a bill. It's so hard for me
      >not to react and say "What's the big deal? Why are you getting so upset
      >over this?" That I find, is my biggest struggle with helping them with
      >this disease. In the mid to beginning stages they can at one moment be
      >totally alert and level headed and then in a moment notice switch into a
      >angry person shooting a character assasination at the turn of a hat. That
      >is so so hard for me to adjust to.
      >
      > All I can say, is I'm trying to learn to NOT say.....things
      >like.......WHY are you so upset? Why cant you do this w/out getting angry
      >or chill out. That just makes them feel more vunerable. I try and
      >remember that she can't control her emotions......she's sick. It's not her
      >fault. I try and think man.....this could be me someday.....how do I hope
      >my kids will react when I can't get my thoughts, emotions together. I can
      >tell my Aunt is frustrated. That's at the root of most of her behavior.
      >It's frustration and terrifying when you see that you aren't able to do the
      >simple things in life that you used to do with ease.
      >
      > Try in these momemts to first remember she can't control it, she is
      >feeling afraid or upset and that this is something that her BRAIN is
      >doing.........not your wife. Let words roll off your back (that is the
      >hardest!) and don't even respond . Just reassure, comfort and love. It's
      >hard. I know.
      >
      > I can't do it on my own. I don't have the ability or the willpower. But
      >I do have a wonderful Lord who supplies me with all I need. I ask for
      >patience, He sends it, I need hope, He freely has already displayed
      >it......and I cling to the promise that this is all just temporary. I pray
      >that God will give you comfort.
      >
      > April
      > ----- Original Message -----
      > From: Winn<mailto:beacon1968@...>
      > To:
      >onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogroups.com>
      > Sent: Sunday, December 12, 2004 10:10 PM
      > Subject: [One Big Huntingtons Family] New Caregiver
      >
      >
      >
      > My name is Winn, and my wife, Harriet has HD. We run support groups
      > at a local senior center for people with chronic illnesses. Lately,
      > her condition has begun to get worse. Her younger sister has been in
      > a nursing home for over three years, and is far more advanced than
      > Harriet. Her younger brother committed suicide about two years ago
      > rather than face the disease any longer. Ten years ago, we took
      > Harriet's mother through this terrible disease.
      > Now, Harriet is a fighter, and has kept her mind busy, as well as her
      > physical being. Together, we teach computer classes to seniors,
      > councel seniors on how to build a support system to help get through
      > chronic illnesses, publish our senior citizen center newsletter, and
      > work on numerous fund raising programs.
      > I have cancer (in remission), COPD (under control), diabetes (also
      > controled by meds), and FMS. Harriet has HD, Osteoporosis, and two
      > degenerative discs. We have survived all of this because we refuse
      > to give in, and we have a strong God, who isn't done with us yet.
      > But, as is always the case, the HD is begining to win out. Lately,
      > Harriet requires many extra naps. Her balance is getting much worse,
      > requiring her to now use a walker. She is begining to blame
      > everyone, especially me, for anything that has gone wrong over the
      > years, and exercises what we call a "selective" memory when refering
      > to the past.
      > I have studied HD all over the Internet, and like to feel that I am
      > ready for what lies ahead, but now that the decline has become a
      > reality, I am having trouble coping with seeing this intelligent,
      > loving, wife and mother, become a cynical, angry, and always tired
      > woman. Any advice that I can get will be greatly appreciated.
      >
      >
      >
      >
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    • Winn
      Tracey, You should feel no guilt at all. As spouses of people who suffer from chronic illnesses, we are expected by God and by society to stand by and support
      Message 2 of 5 , Jan 9, 2005
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        Tracey,
        You should feel no guilt at all. As spouses of people who suffer
        from chronic illnesses, we are expected by God and by society to
        stand by and support them. However, nobody expects us to place
        either ourselves, our children, or even the one who is ill, in
        danger. When someone reaches the point where they threaten those
        around them, it is time to take steps to protect yourself. You did
        the right thing, so it is time now to move on.
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