Didn't get around to walking the dogs like I had hoped, but I think Cubby (in picture w/ Mom in April) is still recovering from her couple-mile walk in the woods on Sunday. She's moving a little stiff today and not wanting to move around too much. Anyway, other than that, it was as "normal" a day as there is! The social worker from the VNA, Mary Lou Daly, (coincidentally a childhood friend of Mary's sister!) - who makes monthly, and as needed, visits to all hospice patients - came today. She spent some time talking to Mom - through me - and assured her that we'd make her "as comfortable as possible". I always just WISH so hard that I could know how she is really reacting and feeling when people say things like that to her. I remember thinking the same thing when the doctor came for his initial housecall that first day. He calmly explained to her how this disease is progressive and that it will ultimately affect her breathing and how there are things we can do, some of which are invasive (ventilatory support) and some of which aren't (morphine), but that we would do whatever she wished in order for her to be comfortable. What is going through her mind? Is she sitting there still thinking she's going to beat this thing? Is she mentally preparing herself for this last bit of decline? Is she scared? Is she at peace? It's just impossible. And because we can't know, can't guess, and because she can't tell us, I never know how to approach it or what to say to her. I told Mary Lou today about a poem that I remember seeing floating around the VNA in some of our hospice literature, it's by Henry Van Dyke... and that I know my mom used to always enclose the same poem in sympathy cards whenever she had occasion to send one. I think about that poem often and wonder if it would bring HER comfort as she thought it had brought comfort to so many other people. Mary Lou suggested I approach it with her... but I don't think I can. What if she's TOTALLY NOT thinking like that? What if that totally freaks her out? My inclination is to do no harm... it's not my job to try and "make progress" or help her progress toward peace and acceptance, even though I truly wish this for her. I tried to even say to her the other day when her college friend was leaving and she was so sad for a while afterward... I tried to remind her that people come to visit because they love her so much. But even THAT feels to me like we're talking about her dying! I just don't know what to say, I wish I could read her mind. Tonight I was sitting with her on the edge of her bed and she was moaning and groaning inconsolably... as I was trying so hard to figure out what was bothering her, she started turning her head to her left. Turning her head and looking to the left. I was trying and trying to figure out... and I started questioning whether she was trying to show me something on the side of her head... I started worrying that I was missing some signal that she had pain. Is it in your ear? Is your hair tangled somewhere? Does your head hurt? It is your neck? I started massaging her neck and shoulder, cleaned her ear with a q-tip, moved all her hair to the other side of her head, changed her pillow, raised and lowered the head of the bed... Mercy came back in and started worrying with me... Mom was still moaning and groaning and becoming increasingly more frustrated, we were obviously NOT getting what she was trying to tell us! Mercy suggested we try to sit her up so she could look over Mom's head and neck and back... on and on and on we went... probably 20 minutes like this, both of us so scared we're not able to identify her pain! Mercy finally said "do you need to use the commode?" Well, yes. She wasn't turning her head to show me anything on her face, she was trying to LOOK AT THE COMMODE to signal that she had to use it. How much worse can it be? When she gets upset and frustrated, it's just impossible. How can she not be upset and frustrated? Here is the poem Mom always sent in sympathy, she always thought it brought comfort:
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other. Then someone at my side says: "there, she is gone!" "Gone where?" Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port. Her diminished size is in me, not in her. And just at the moment when someone at my side says: "There, she is gone!" there are other eyes watching her coming, and other voices ready to take up the glad shout: "Here she comes!"
Mercy turned 50 today, we helped her celebrate with a candle atop the littlest carrot cake you've ever seen, and a whispered rendition of Happy Birthday. She cried and cried and thanked us for making her day. She's a sweet spirit and we're lucky to have her help.
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other. Then someone at my side says: "there, she is gone!" "Gone where?" Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port. Her diminished size is in me, not in her. And just at the moment when someone at my side says: "There, she is gone!" there are other eyes watching her coming, and other voices ready to take up the glad shout: "Here she comes!"
Mercy turned 50 today, we helped her celebrate with a candle atop the littlest carrot cake you've ever seen, and a whispered rendition of Happy Birthday. She cried and cried and thanked us for making her day. She's a sweet spirit and we're lucky to have her help.
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