Gregory was quite distraught twice today, "Something is not right." He looked sick but it turned it he had to go to the bathroom and didn't realize it until I suggested he do so.
Recently he has had trouble navigating his dinner plate when there are too many types of food on it so I have to figure out how to serve dinner differently.
He no longer knows how a book works regarding where one begins, ends and/or how to turn pages when ready so he can no longer read before bedtime. He cannot tell me or even show me even with my help and suggestions in starting his reading and monitoring where he ends.
I cannot remember when the last time we had a conversation or when he was able to tell me what he needed to tell me short of, "I ....." without my having to guess or give up guessing.
Sometimes I do not know how I can go on like this. I will but I am grieving the current losses. I'll regroup, figure out how to cope, and move on.
Let me say that even with all of our friends, family and the love that surrounds us ... I feel so lonely. So overwhelmed. So frightened. So lonely.
Sorry to unload.
Two poems from a book our friend Roger gave me called "Poems That come to Mind:for those who love someone with dementia" in the haiku or tanka sytle, by Linda E. Austin.
I reach my hand
into the day
searching its pockets
for a penny
to buy a new beginning
• • •
in the deep, dark well
when the light at the top fades
it is only you
and the god you believe in
and sometimes that's not enough
I feel sick inside for you. I feel sick inside for Gregory as this can't be even remotely easy for either of you. I want to reach inside your pain and disease and every so gently rip it out. Maybe not ever-so-gently.
ReplyDeleteI am happy that you found another companion for Gregory. That will be good for both of you. Like with Ken, perhaps the breaks away from other, brief as they may be, will aid your mental health.
Again, if there is every anything I can do - come to Evanston to stay for a few days to give you a break, just say the word. I suspect it isn't the time apart that would serve you best, but to have your Gregory back. The Gregory you fell in love with, the one with all his faculties intact, his music, the quick wit and sense of humor, his head jam-packed full of knowledge, thoughts and opinions and the capability to share them with you at whim.
My mind and heart are hugging you, holding you and sending as much love as you can imagine.
Prayers and love for you and Greg.
R
I wish there were something I could do or say that would make everything better, that would in some small way bring Greg back. But there isn't and I can't.
ReplyDeleteI wish there were something that I could invent or sprinkle around your apartment to bring a piece of Greg back. But there isn't and I can't.
I can only imagine your loneliness, your fear, your being overwhelmed, your ultimate powerlessness in the face of this awful disease. But ultimately the place you still have power, perhaps the place any of us have any power, is over yourself and how you manage and respond personally to all of this.
Yes, lonely. Yes, afraid. Yes overwhelmed, but you have shown incredible resilience, flexibility, and love--a deeper pool of these than I ever thought existed. But even these can't assuage the deep grief of loss.
Know that I love you and Greg very much. Know that I support you in any way I can. Know that I am just as confused about why we go through such difficult life trials. Hold on. Hold on. Hold on. And then I will support you totally and completely when you are ready to let go.
No magic elixirs. Only love and compassion.
J
Keeping all good thoughts for the two of you and praying that somehow you will find the strength to keep coping, keep going forward, keep loving. Bruce and I both send lots of love and positive thoughts. xoxo
ReplyDeleteThanks Linda. As I said, today IS a NEW day and by day life always seems easier.
DeleteNever apologize for "unloading." Of course you have to dump! As we stand helplessly by, in our hearts if not physically, we can at least listen. I wish that it does somewhat help you with your burden.
ReplyDeletePat
PS. When we get together, you can talk for the first 20 minutes and after that we will take turns. :)
ReplyDeletePat