Statistics say that my husband will not die from Dementia. He will either have a seizure that will stop his heart or choke to death. His Mother choked to death.
I am now trying to save for his Casket. Also, I will need in the near future have to make a decision on whether to purchase a hospital bed or purchase a bed for me to put in our spare bedroom. Decisions. I go to sleep at night and wonder if I’ll be woken up during a full blown seizure. He is not there yet, but it’s coming.
He’s afraid he will forget his son. I hope not. His Mother forgot who he was and that haunts him. He watched his Mother die and now knows he gets to do the same thing. He will not go through what she did. Yes, it will kill him sooner than it did for his Mother, but no more suffering seems to be the better choice. So, after consulting with an attorney last summer, being appointed Power of Attorney, we have a DNR on file. His Mother would always be "brought back" after her seizures. He does not want that.
Our son has a 50% chance of inheriting this. He is aware of the chances. He’s 16 now and I feel so blessed to have had him. I made Tish promise that if he is afflicted with this disease that she would care for him if I am no longer alive. She has agreed to care for him. God willing, he has dodged the bullet.
We were offered Genetic Testing for Jack. They have to take blood from Leon, locate the defective Gene, then check Jack's blood for the defectic Gene. Takes a long time. The problem? Our Insurance will not cover it. I asked about the cost, thinking it would be a few hundred dollars. $1,800 to be exact. That is not in my budget. So, we play the waiting game.
If this post sounds dark or depressing to you, well, I can't apologize because this is my life now. I live with Statistics and such. We make the best of each day and go on into tomorrow.
I honestly wished I could create a blog for family and friends on my life, our life, that is full of wonderful messages, newsy stuff, stories of my crazy life. One day that will be, until that time, this blog is to keep family and friends informed of what my life is now, what my life has become.
We still laugh, still joke, still live a relatively normal life, only our "normal" is different. There are many, many families that have a terminally ill spouse or worse, child. We are not alone. You just learn to live your life according to the disease. The sun will continue to rise, a new day will always arrive.
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