Profound, overwhelming sadness. That pretty much sums up how I'm feeling these days. My head still spins when I think of how fast everything seems to be progressing.
I have updated the Progression of Dementia page, which you can read here.
Jim's increased somnolence has resulted in less food/beverage intake. He has lost 7 pounds in the last month. A while back, his diet was changed to include more finger food, as he was no longer able to use utensils for eating. For example, if spaghetti and meatballs was on the menu, Jim might get a burger on a bun or some other type of food that he could hold in his hand and feed himself.
At this point, he is no longer capable of managing the finger foods either; he must be fed all of his meals. I've requested the return of the regular menu items, hoping they will be higher calorie and more palatable. We'll see if that helps prevent some of the weight loss. If not, the dietician is suggesting a high calorie shake midday. Would he even be able to wake up for that?
He continues to sleep most of the time, day and night. Staff get him up for meals; sometimes he is just too sleepy to eat, literally falling asleep at the table.
Over the last couple of weeks I've noticed that Jim's respirations are quite irregular. While sleeping, he has pauses in his breathing for 20 - 30 seconds, followed by several rapid and deep breaths. The doctor confirmed that Jim is experiencing what is called Cheyne-Stokes respirations, resulting from damage to his brain stem from his dementia. This is not a good sign, and confirms that Jim is closer to the end of his life.
He is starting to lose the ability to hold himself upright when sitting in his wheelchair. PT has provided a bolster/support for his lateral lean to the right.
Last week was particularly rough. Intellectually I understand exactly what is happening. But emotionally it's very difficult. A good friend of mine gently suggested that it might be time to make final arrangements. I knew she was right, but it was so hard to make that phone call. My brother accompanied me to the funeral home; he has been a tremendous support to me. Having him there to discuss options and plans made it so much easier. So it's done. Arrangements have been made.
I'm spending quite a bit of time with Jim these days. It's comforting for me to be there with him. Of course most of the time I'm watching him sleep. But when he opens his eyes ever so briefly for a few seconds, I'm so happy that we are there together. I take my iPad with me along with the math puzzles that I love to do (KenKen). And at the good suggestion of Dr. M., I've incorporated one or two outdoor walks while I am there.
When I go to bed at night, my phone is on the nightstand. I'm dreading the call. But it will come, of course. And when it does, I'll know that even though his physical body will be gone, his spirit will live on. He will always be a part of me.
I had a dream the other night that seemed so real! Jim sat up in bed, looked at me and said "Oh, don't worry, I'm OK. I'm right back to normal." And in my dream I believed it to be true.
I'll know the end is near when he stops eating and drinking. The other possibility is that the Cheyne-Stokes breathing pauses have the potential to result in an abnormal heart rhythm that could end his life. I just know that I want him to be peaceful and comfortable as the time nears.
I have amazing support in my life. Dr. M. is my safe harbor where I can process all that I'm going through. I can't imagine not having her by my side on this journey. Family and friends have all stepped up to be there for me, supporting and encouraging, saying just the right thing. And I'm ever so grateful to my friend jabberwalky, who over the miles has been an amazing friend and support to me.
And of course to all of you dear readers, who have been, and still are, on this journey with me. Your encouragement and kindness means the world to me.
