A sad progression has occurred over the past week. Amir is beginning to forget how to swallow. Today they will start him on pureed foods. After that, as he declines, they will start him on liquid foods. After that, I have to make the terrible decision I’m dreading, but I won’t have to make it today, thank God.
Somehow I am still in denial about all this. How is that possible, after being his one on one caregiver alone for so long, and finally having to place him in residence for his own safety? Why is it that I still believe he was fine one year ago? Clearly he is in the latest stages. I wonder if this is somehow my brain's way of protecting me somehow, or is it a period of grace from God?
I just pray I'll be able to deal with the upcoming inevitable events. At times I worry about the soundness of my own mind.
Oh Joni, your post went straight to my heart. It does not sound like you are in denial at all; you're just asking the same question that so many people on this site have asked themselves - "How is it possible . . . ?" Amir is so lucky to have you to make these hard decisions for him. Hang on and have faith in your ability to do that. -- myrtle
I was warned about swallowing over two years ago. It brought facing that same decision and for me personally I couldn't believe in a reason to keep making her go through this and felt when the body is ready to give up I should let that happen. What an awful thing to have put on us.
Perhaps part of the reason it seems fast is because of your dedication to him. I truly believe Joni, that if Amir were capable his concerns would be about you, and your mental and spiritual health. Try and set some strength aside for yourself in the time ahead.
Oh, myrtle and Wolf, Thank you so much for your kind words. You're right, it's not denial, and it only seemed fast because I have dedicated the last ten years of my life to keeping him alive. I already know there is no choice about a feeding tube - I won't do it to him. Everything in me still wants to fight like hell to keep him alive, but it's bigger than me now. I hope I can be strong, or if not strong, resilient enough to see it all through.
After you've fought so long to help him, it's heartbreaking to realize that the disease has won after all. When my husband died, I felt utterly defeated. Then intense sorrow came. In time, that has softened.
Joni, I don't think you are in denial--just thinking of his needs in a realistic way and with deep caring. (((hugs))) And don't worry about the soundness of your mind--it is just Alzheimers caregiver stress--it makes us all weird at times, I think.
Joni, having to accept and admit that there is nothing to slow down this dread disease is so heartbreaking. for each of us it comes a time when we know we cant win this battle no matter how hard and long we endure. believe me, I know as I went thru almost 15yrs trying to keep mine alive as well. when the end times came, I still tried relentlessly to make his time on Earth last, to no avail. there will be hard choices ahead, but we know in our hearts what will be the best choice at the time presented. divvi
Joni, I am also very sorry that you have come to this point. My husband is in the later stages also, and I well understand how helpless you feel. Wishing you strength.