Huntington's Disease Revisited

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Huntington's Disease Revisited

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This is a fantastic forum, filled with helpful, patient and understanding people who - for the most part - are going through similar situations. There's a sharing of hope, frustration, exhaustion... and a camaraderie that only comes from being in the trenches together.

When I first came here I was distraught and "at the end of my rope". As much as I love my wife, I didn't see how I could continue giving her the care she requires. I quickly found this forum to be a much-needed respite for me... for sixty minutes each night I could joke, empathize, smile (even laugh), and get advice from this group of kind strangers who quickly became friends. It helped me far more than I ever hoped for.

I always felt a little funny when asked how my day was, or in particular how Joanne was doing. The questions came from a loving and caring place but I struggled with how to answer. What I didn't want to do was burden everyone here, every single night... so I didn't feel comfortable giving specifics. I had to be vague (for the most part).

Huntington's disease has no cure. There is no remission. There is no hope of even slowing its devastating progression. Generally speaking, there are no "good" days (although July 23rd was a miracle for both of us that I will always treasure). Regarding Joanne, the way it dehumanizes such a gentle person makes me question my faith in God at times. When I see my children helping out, it sometimes makes me tear up and I have to leave the room... I can only imagine they are thinking there's a 50% chance that this will be their fate as well.

Her decline in 2018 has been shocking, but looking back I suppose it was to be expected... it's the hand she was dealt, playing out. Although I know what's waiting at the very bottom, I have no idea how deep this abyss is... I just pray to God that I have the physical and emotional strength to care for and to comfort Joanne until we find out.

(Editor's Note: Please join us in our Caregiving chatroom during our schedule chat hours: 9 a.m. ET, 2 p.m. ET, 9 p.m. ET. Just click on the orange chat bubble and then click to enter our Caregiving chatroom.)

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Lark

Mike, believe it or not, you spoke so many of my thoughts of late. Robert's illness only has one end also and he has been losing ground and he knows it and that breaks my heart and challenges me emotionally. I get you and I am grateful you poured yourself out on this blog. The chat is safe for the same thing but a blog post allows for the luxury of letting our thoughts flow out in one continuous flow. Your love for your wife is precious. I do have a deep and abiding faith in Christ. Even so, there are days when walking this journey out is almost crippling to me. I cried for the first time in months when I went to church Sunday. I asked several women to pray for me and I just had one of those old-fashioned, heaving cries. The tension left me for a time and I felt so much better. God is so evident in your home. He is at the heart of your love for your family and He is at the heart of your love and care of your wife. He knew the exact man to give your wife even from the very beginning. He knew who to choose to entrust with your wife. Yes, this is by far the most difficult walk I have encountered in my life and I often wonder how on earth I am going to do it. But I come to the chat and I seek out my friends both in AA and in church and I gain strength in their belief in me and in their stories and struggles. Just think, God knew you and I would meet in this chat and that we would understand each other so well and then He knew a bunch of other people who would be there for both of us and us for them and here we are uplifting each other through the worst of times. You are loved, friend.

CathyJ

Mike, thank you for the honesty and deeply heart felt blog. Before getting to meet you, and meet Joanne through you, I had never heard of this disease. I can't even begin to comprehend the impact of this disease on you and your family. I so agree that this forum has provided unconditional support and relief for us as caregivers. Just to have a place where people get it and care and ask and quietly support. I know you will find the strength because love is the strongest caregiver there is and your story has always been powered by your love for your wife and your children. I have such respect for the way you care. Thank you for sharing and for letting us know how truly difficult the days are for you.