Did you know a lot can happen in a week?
A week ago, Mr. B was walking (albeit unsteadily) and conversing, and hugging, and eating (albeit not a lot). I was working full-time and he was able to stay home alone.
Today, he is doing none of the above.
He can still stagger from the 'day bed' in our former dining room around the corner to the bathroom, or over to the recliner, but that's about it. He's no longer interested in even a few sips of smoothie or milkshake -- his only sustenance for the past week -- but he has had a few sips of chai tea with soy this morning. I have gone in to work for a few hours here and there this past week but as it stands now I won't be going in much, if at all.
I had kind of envisioned that this final phase of life would be full of heartwarming, intimate moments of connection, saying things to each other that would stay with us always, and stuff like that.
That's not quite the way things seem to be working out.
He's gone almost completely internal at this point, and any stimulation that comes from outside (including me) seems to be a distraction from whatever he is doing inside to get ready. As he retreats further inward, the slight-yet-always-present undercurrent of stubbornness I've always felt running through him is coming closer to the surface.
This morning he wanted to move from the day bed to the recliner. I cleared a path through the living room and pulled out the walker hospice sent over. When it was time, he insisted on going through the kitchen around to the recliner, through the one doorway in the house too narrow for the walker to fit.
Guess he told me, huh?
I ask him what he wants or needs, or try to tell him about what's going on with the day, and he gets restless and whispers he feels he's being "talked at". But when I say "I love you," he always replies "Love you, too." I'll take that.
Everyone tells me I'm doing a good job and that does help, but I still feel like I'm not giving him what he needs. Then again, maybe whatever he needs, it's not mine to give.
There's a booklet hospice gave us called "Journey's End: A Guide to Understanding the Final Stages of the Dying Process." I finally managed to make myself read it the other night, and I'm glad I did. It left me with a much more, well, sacred image of what he is working through right now. I actually feel I've been entrusted with the task of getting him through this as peacefully as I can.
Have I mentioned that this is The Hardest Thing I've ever had to do in my whole life?
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Oh Liz, this is awful. I'm so sorry.
ReplyDeleteI went through this with my mom.... Wish I could put my arms around you and just hug you.
ReplyDeleteI would suppose being there with him is the greatest gift you can give. I can't imagine what you are going through. I am so sorry and pray God will give you strength.
ReplyDeleteBless you . You are a very courages lady.
ReplyDeleteI certainly don't think of it as whining. Your blog is going to help so many other people that are in the same situaton.
Liz, I have no words. Please know that positive thoughts and energy are being sent your way.
ReplyDeleteOh, Liz, I am so very sorry. I went through this last year with my mom and I know exactly what you mean when you say you feel like you aren't giving him what he needs. Yes, you are. You're there. I very distinctly remember when my mother went, as you so accurately put it, "internal." She wouldn't talk for hours and then she would beckon me close and tell me how much she loved me and how proud she was of me. My dad couldn't be in the room with her because he would just cry uncontrollably, making her feel as if she needed to comfort him.
ReplyDeleteCaring for my mother while she passed from this life to the next was the hardest thing I've ever done. But it was also very, very precious. She brought me into this world and it was an honor and privilege to hold her hand when she left it.
I'm thinking of you and praying for you. The hospice people are really wonderful -- lean on them.
loads of love to you both...
ReplyDeleteMark and I were really grateful to be there for that short time Saturday. Being a witness to this process is heavy, but certainly puts absolutely everything into sharp focus. We spent the early part of the summer caring for Mark's mom, and were with her as she left us.
ReplyDeleteJust know that everything you're working through now will hold you steady in the days to come. You ARE doing a great job. You ARE very much loved.
Yes, Liz, I had imagined that the final phase would be, the same as you. That doesn't mean that you can't still say the things that you want to say to Mr. B, though.
ReplyDeleteMy heart goes out to you.