Trying to cope

Tuesday, April 05, 2016

Thank you everyone who posted on my last blog. Really means a lot and feels good to share whats going on with you all.
My husband has told a few people of his terminal disease (huntingtons) but as of now, our children dont know he has it yet.
We are trying to find the right words for them, and the right timing. Trying to preserve some of their childhood before symptoms become more obvious.
We had a talk about the disease last night with them, about how it runs in their dads family.
Our 8 year old son asked if he could have the disease. I hated that my answer wasn't "no". Just trying to be honest with them.
My husband is getting medically retired out of the military. His symptoms are making it harder for him to do his job. He has begun having tremors in his hands, which is not good when you are dental.
He has/had many mental symptoms for some time. I wonder if I was in denial or just scared to not "know" earlier?
I knew he had it about 6 months before he got tested. He is becoming paranoid, depressed, his anger as gotten really bad, anxiety and losing some logic.

My kids have asked me about why dad takes meds and my oldest has noticed his anger and other issues. We will not be able to hide this from him for long.

We are moving from Alaska to Kentucky.
I love Alaska, but it is too expensive to live and they do not have any type of specialist for my husband or support groups.
Kentucky has all that plus, it has my husbands family.
My husband told me he wants to be around his brother, who also has the disease, and his mother, who probably only has a year or so left.
So off to Kentucky we go, this summer.
My whole life has totally been flipped upside down.
Trying not to stress about selling the house, moving across the country, and dealing with everything else.
Trying to find time for myself. Getting healthy isn't just for me anymore. I am going too need to be there as the caregiver for my husband, and possibly my children as well now.

God, please give me strength!

Selena, muster up some motivation during this time of grief and take care of yourself.
You can do it! do it!

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Member Comments About This Blog Post
    I've been thinking of you often, and praying that God will lead you all through this and hold you all close to Him.
    1822 days ago
    My heart breaks for what you're going through, and for the difficult times ahead. :( I hope you're able to make as many happy and loving memories together as you can in the time you have together.
    1831 days ago
    You are incredible! I truly am so sorry you are facing this trial. I think about you often. It sounds like Kentucky will be a great place to be even though it will be such a big change. I hope you find lots of support and happiness there. Hang in there. I love what your page says: Life is tough, but so are you. You are inspiring and I wish you the very best as you get ready to move this summer.
    1834 days ago
    So sorry thinking of you. emoticon
    1840 days ago
    emoticon emoticon emoticon May the Lord be with you all. You're all in my prayers.
    1840 days ago
    So sorry. emoticon and prayers for all of you.
    1840 days ago
  • NHES220
    Selena, my thoughts and prayers are with you as you go through this difficult time. It sounds like the test was really just a confirmation of what you already knew was there. I pray that the sale of the house and your move to KY goes smoothly and that it is not too stressful for the kids. It will probably be better that there is more support and some family, but I know it will be a big change for you. Take good care of yourself - as you said you are going to be a caregiver for your spouse and your kids. Know that the anger he has is the disease - it is not personal towards you.
    1840 days ago
    1840 days ago
  • KAREN608
    May the Lord strengthen you, as you prepare for the big move near family and dealing with each medical issue as it comes. Praying the children take this in stride and be helpful as they can. You do have close family, and that is a blessing. Mine isn't and I struggle alone. But God is faithful.
    1841 days ago
    You and your family are in my prayers.
    This is a lot to deal with, and I'm glad you're able to find so much support in one place when you move to Kentucky.
    Have you talked with your sons' school counselors for timing on "the talk"? I understand children develop and understand at different rates, but you might be able to get some resources for talking to children about parent illnesses, how to broach the subject and what language to use. Seeing an uncle and a father with similar symptoms will certainly raise some questions.
    And when you arrive in Kentucky and are setting up school enrollments, make sure the school personnel know your sons' situation and are aware of what they are dealing with. Personnel should be discrete and keep information confidential, but that information would give them a context for your sons.
    Sending you strength.
    1841 days ago
    Thinking of you and wishing you continued strength.
    1841 days ago
    Kentucky is very beautiful.

    Prayers for you and all your family.

    1841 days ago
    Kentucky is a beautiful state and the people there are fantastic. I hope you have a smooth transition with your move and that the disease does not progress rapidly. I sent a prayer for you too.
    1841 days ago
    Wow, that's a lot to deal with. I don't mean to go religious on you, but I want you to know that I took some time to pray for you and your family this morning. I pray that some how or other, the comforting presence of God will surround you today. Thanks for sharing.
    1841 days ago
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