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Baby girl at risk

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  • rebeccaschultz_927
    My husband is at risk and does not wish to be tested. We just had a baby girl who is also at risk. We decided when she is old enough she can make the decision
    Message 1 of 6 , Dec 14, 2010
      My husband is at risk and does not wish to be tested. We just had a baby girl who is also at risk. We decided when she is old enough she can make the decision for herself to be tested. Every day I wonder does she have HD? Is this is a sign? Does he have it? Is so what will I do? etc. I can't begin to fathom what I will do if both my my husband and daughter have HD. How do I take care of both of them, hold down a job and manage. We are financially stable at the moment and owe very little on our home but physically and mentally it would be alot for me to handle. I told my husband when he asked for me to promise that I would never put him in a home that I could no longer make that promise if he became a danger to himself or others. My husband can't seem to understand why I can't make him that promise.
      I just needed to vent hope that there are others feeling the same way.
      -Rebecca
    • Dave Hodgson
      Rebecca, what you are feeling is totally NORMAL for caregivers. We all go through thoughts such as yours and they are very normal feelings. How will you take
      Message 2 of 6 , Dec 15, 2010
        Rebecca, what you are feeling is totally NORMAL for caregivers.  We all go through thoughts such as yours and they are very normal feelings.  How will you take care of him and your daughter if both have HD?  You will do what is right for YOU and no one can fault you for doing whatever comes with either him OR her.  Most of us are surprised sometimes what we are able to "handle" when dealing with a loved one and HD.  The most important advice I can give you is to start advocating for HD among your friends and co-workers.  The more THEY know about HD, the better chance you will have to put them on your care-giving team if needed.  I did this when my late wife was diagnosed.  When she finally became bed-ridden, my employer was more than willing to let me take the time off to care for her, take her to doctors appointments, etc. without fear of losing my job.
        Hang in there....he might NOT have HD.
        Peace and love
        Dave
         
        Illinois Chapter TEAM HOPE-Walk For A Cure
        http://www.HDWalk.org
        Ill. Chapter-HDSA Web Page
        http://www.hdsa-il.org
        Sponsor Dave & Susie's Walk
        http://www.firstgiving.com/DaveandSusie
        ----- Original Message -----
        Sent: Tuesday, December 14, 2010 10:10 PM
        Subject: [huntington's at risk] Baby girl at risk

         

        My husband is at risk and does not wish to be tested. We just had a baby girl who is also at risk. We decided when she is old enough she can make the decision for herself to be tested. Every day I wonder does she have HD? Is this is a sign? Does he have it? Is so what will I do? etc. I can't begin to fathom what I will do if both my my husband and daughter have HD. How do I take care of both of them, hold down a job and manage. We are financially stable at the moment and owe very little on our home but physically and mentally it would be alot for me to handle. I told my husband when he asked for me to promise that I would never put him in a home that I could no longer make that promise if he became a danger to himself or others. My husband can't seem to understand why I can't make him that promise.
        I just needed to vent hope that there are others feeling the same way.
        -Rebecca

      • Heather Taylor
        Hi Rebecca, Forty-seven years ago I was that baby girl and my mom faced what you face.  I always knew I was at risk as well as my dad.  I wish I had not
        Message 3 of 6 , Dec 15, 2010
          Hi Rebecca,
           
          Forty-seven years ago I was that baby girl and my mom faced what you face.  I always knew I was at risk as well as my dad.  I wish I had not always known.  I think I may have lived life more fully had I not known.  Anyway, my dad never developed HD, instead he passed away at 64 from cancer. Both his siblings had HD, one passed away at 67 the other at 56.  All my cousins are HD positive.  I have never been tested.  Am I HD positive?  I do not know. Probably not but maybe so.  Who knows.
           
          My advice live and love take what comes when it comes.  Get Aflac or othe disability insurance that will provide in home care.
           
          Heather


          From: rebeccaschultz_927 <no_reply@yahoogroups.com>
          To: huntingtonsatrisk@yahoogroups.com
          Sent: Tue, December 14, 2010 10:10:56 PM
          Subject: [huntington's at risk] Baby girl at risk

           

          My husband is at risk and does not wish to be tested. We just had a baby girl who is also at risk. We decided when she is old enough she can make the decision for herself to be tested. Every day I wonder does she have HD? Is this is a sign? Does he have it? Is so what will I do? etc. I can't begin to fathom what I will do if both my my husband and daughter have HD. How do I take care of both of them, hold down a job and manage. We are financially stable at the moment and owe very little on our home but physically and mentally it would be alot for me to handle. I told my husband when he asked for me to promise that I would never put him in a home that I could no longer make that promise if he became a danger to himself or others. My husband can't seem to understand why I can't make him that promise.
          I just needed to vent hope that there are others feeling the same way.
          -Rebecca


        • Scott
          Hi Rebecca, glad you could vent...this is a good place for it! I am @risk and could never ask my wife to make such a promise.  Whjle his request is a bit
          Message 4 of 6 , Dec 15, 2010
            Hi Rebecca, glad you could vent...this is a good place for it!
             
            I am @risk and could never ask my wife to make such a promise.  Whjle his request is a bit selfish, he obviously has a sincere fear of abandonment.  Perhaps he has seen it in his own family.
             
            Stand by your words "danger to himself or others".   For some that can be a long way into the illness, if it ever even comes.  For others I've heard where it comes earlier.  But that is more than a fair compromise.
             
            That all said, reassure him you will keep him near you for as long as possible and won't be deserting him; only making sure he has the best care possible should a time arrive where you are unable to care for him alone.  Don't resent him asking you to make this promise, Rebecca.  He is obviously very frightened by the disease and the unexpected. If you can afford it consider Long Term Care insurance.  Price goes up every 6 months, so waiting can increase the premiums.  You might consider visiting nearby facilites that care for patients.  It may offer him reassurance.  (Careful this could also backfire, or raise new anxiety).
             
            I hope you continue to talk this through.  Don't get mad, get information ;).


            From: Dave Hodgson <SpikeTDog@...>
            To: huntingtonsatrisk@yahoogroups.com
            Sent: Wed, December 15, 2010 5:59:52 AM
            Subject: Re: [huntington's at risk] Baby girl at risk

             

            Rebecca, what you are feeling is totally NORMAL for caregivers.  We all go through thoughts such as yours and they are very normal feelings.  How will you take care of him and your daughter if both have HD?  You will do what is right for YOU and no one can fault you for doing whatever comes with either him OR her.  Most of us are surprised sometimes what we are able to "handle" when dealing with a loved one and HD.  The most important advice I can give you is to start advocating for HD among your friends and co-workers.  The more THEY know about HD, the better chance you will have to put them on your care-giving team if needed.  I did this when my late wife was diagnosed.  When she finally became bed-ridden, my employer was more than willing to let me take the time off to care for her, take her to doctors appointments, etc. without fear of losing my job.
            Hang in there....he might NOT have HD.
            Peace and love
            Dave
             
            Illinois Chapter TEAM HOPE-Walk For A Cure
            http://www.HDWalk.org
            Ill. Chapter-HDSA Web Page
            http://www.hdsa-il.org
            Sponsor Dave & Susie's Walk
            http://www.firstgiving.com/DaveandSusie
            ----- Original Message -----
            Sent: Tuesday, December 14, 2010 10:10 PM
            Subject: [huntington's at risk] Baby girl at risk

             

            My husband is at risk and does not wish to be tested. We just had a baby girl who is also at risk. We decided when she is old enough she can make the decision for herself to be tested. Every day I wonder does she have HD? Is this is a sign? Does he have it? Is so what will I do? etc. I can't begin to fathom what I will do if both my my husband and daughter have HD. How do I take care of both of them, hold down a job and manage. We are financially stable at the moment and owe very little on our home but physically and mentally it would be alot for me to handle. I told my husband when he asked for me to promise that I would never put him in a home that I could no longer make that promise if he became a danger to himself or others. My husband can't seem to understand why I can't make him that promise.
            I just needed to vent hope that there are others feeling the same way.
            -Rebecca


          • Michelle Routhieaux
            That is a perfectly legitimate compromise. You can be legally involuntarily hospitalized if you are a danger to yourself or others whether or not you, as his
            Message 5 of 6 , Dec 16, 2010
              That is a perfectly legitimate compromise. You can be legally involuntarily hospitalized if you are a danger to yourself or others whether or not you, as his wife, make that decision. I grew up at risk and I always knew I could have HD but my family never talked about it. I wish it hadn't been my dark secret. It was scary and I needed information and a friend who understood. It's natural to feel overwhelmed as a potential caregiver and someone who's being forced to wait. Jean always told me "Plan as if you have it, life as if you don't." It helps.

              Michelle

              ____________________________________________________________
              How to Stay Asleep
              Cambridge Researchers have developed an all natural sleep aid just for you.
              http://thirdpartyoffers.juno.com/TGL3141/4d09f8e6293ba6dd1cfst04duc
            • Heather Dugdale
              We can survive this disease We can live with HD We can have hope for eternity We will never give up easy We need to fight it We can beat it We will win We will
              Message 6 of 6 , Dec 16, 2010
                We can survive this disease

                We can live with HD

                We can have hope for eternity

                We will never give up easy

                We need to fight it

                We can beat it

                We will win

                We will win in the end

                We can live our lives fully

                We will survive surely

                We will be cured quickly

                We will just believe me
                Animated Fairy.
                 
                Heather Dugdale
                 


                --- On Thu, 12/16/10, Michelle Routhieaux <whatnomuffins@...> wrote:

                From: Michelle Routhieaux <whatnomuffins@...>
                Subject: Re: [huntington's at risk] Baby girl at risk
                To: huntingtonsatrisk@yahoogroups.com
                Received: Thursday, December 16, 2010, 11:32 AM

                 
                That is a perfectly legitimate compromise. You can be legally involuntarily hospitalized if you are a danger to yourself or others whether or not you, as his wife, make that decision. I grew up at risk and I always knew I could have HD but my family never talked about it. I wish it hadn't been my dark secret. It was scary and I needed information and a friend who understood. It's natural to feel overwhelmed as a potential caregiver and someone who's being forced to wait. Jean always told me "Plan as if you have it, life as if you don't." It helps.

                Michelle

                __________________________________________________________
                How to Stay Asleep
                Cambridge Researchers have developed an all natural sleep aid just for you.
                http://thirdpartyoffers.juno.com/TGL3141/4d09f8e6293ba6dd1cfst04duc

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