It’s not all fun and games these days. (See today’s first post here.) When Mama isn’t sleeping either in bed or in a chair, she needs constant attention: fetching water, trying to make her comfortable (mostly impossible), preparing food, walking her up and down the hall looping through the kitchen and living room, taking her to the bathroom. Speaking of the latter, I have said all along that I would draw the line in my caregiving role at wiping her butt. I have crossed the line. Some may call it a sacred task—she wiped mine, now I’m wiping hers—I do not.
Sister Rebecca and I have also said when she needs 24-hour care it will be time to find her a new home. Maybe this is temporary, but deep down I don’t think she will walk independently again. If her bones heal, I fear she will have lost all strength in her arm. I could be wrong, she is tenacious, but we are looking for placement in an Adult Family Home with the help of the hospice social worker and nurse. (Let me say again here what an amazing and wonderful service hospice is. When I feel like running with scissors, I am stopped by knowing they are walking with me and will gently take the scissors from my hand.)
Rebecca and I find ourselves again and again trying to justify placing Mama elsewhere, trying to convince ourselves that it’s okay—even crucial—to take care of ourselves first. The broken arm has made the decision easier: we can’t give her the daughter attention she needs and deserves, take care of her custodial needs, and live our own lives. We know she doesn’t want us to sacrifice our own health and happiness for hers. That doesn’t make it easier to have the conversation with her. We have dropped some hints and hope it won’t come as a shock to her when we tell her. I dread it. But maybe she is just waiting for us to bring it up.
Three times this week she has told first Rebecca, then me, then the hospice nurse that she is depressed and wishes she had died when she fell. She has been depressed for decades, we have never heard her cop to it. The fact is, we all wish she had died. It horrifies and angers me that people facing rapid decline and life without living can’t choose to leave on their own terms.
When she told me over dinner a few days ago that maybe she should just stop eating and wither away, I was surprised that the option even crossed her mind.
“Can you say more about that?” I asked, neither encouraging nor discouraging the line of thinking.
“I’m ruining your lives and it’s not good for me either.”
I asked the question I’ve been waiting for a good time to ask. “Do you worry about what will happen to me when you’re gone?” (This has been a theme of hers since I moved back to live with her, though she hasn’t mentioned it for quite a while.)
”I worry about all of you when I’m gone.”
“Can you say more about that? What do you worry about?”
“That things won’t turn out the way you expect them to.”
“Have things always turned out the way I expected them to in the past?”
“No, I guess they haven’t.”
“And how did I do with it in the past?”
“Pretty well, I guess.”
“Yes, pretty well. And have things always turned out for you the way you expected them to?”
“And you have done really well. No one’s life turns out the way they expect it to. It’s hard, and then we figure it out and keep going, and often it’s even better than imagined. You have been an amazing role model in how to overcome adversity and keep going. You have always been my inspiration.”
There was a long silence; I thought the conversation was over. Then, “Well, thank you for saying that.”
A few minutes later she asked me to crush her multi-vitamin, mix it with a teaspoon of water and a teaspoon of applesauce. She won’t be choosing her end by starvation any time soon.
The next day she told me we needed to get more help or she needed to die. I’m not sure what to make of that, but I choose to believe she meant she doesn’t want Rebecca and me to have to fill this role, not that we are doing it poorly. (The hospice chaplain is coming tomorrow; clearly she is ready to talk about some things that may be too hard to talk about with us.) I told her there is another option (i.e. moving her). “Maybe,” she said, “but not in Centralia. I suggested perhaps we could be a bit more optimistic. I thought we were a year away from such a shift in direction, but as my elder care social worker consultant told me in July, “a fall will change everything.” And so it has.
We want just to be her daughters again, and we can’t be that and her caregivers. It’s impossible to hold good memories or listen to her stories or even read to her when we are exhausted by the person she is now and the attention she needs. It won’t be easy to monitor her care elsewhere, to make sure she is having the best quality of life she can, to spend time every day visiting her; but to be able to come home at the end of the day, knowing she is well cared for, will be life-giving. Time for peer relationships, to go Seattle to watch my grandson play soccer, to attend concerts and take ukulele lessons and write and hike are vital to my life. And yes, I will have to make some money—hopefully get those writing groups going that I’ve been dreaming about. And clean out the house and make it feel like my home.
Sunday was a beautiful autumn day. I asked her twice if she didn’t want to sit on the deck and breathe the Pacific Northwest air. “No,” she said, simply. She has given up. “Hope dies last,” May Sarton said, (I’ve explored it here and here) and so it goes. I won’t be surprised, if the arm stops hurting, to find her bouncing back. Meantime I’m making soup for her, trying to keep her bowels moving, attempting to make her and her broken arm comfortable, and wiping her butt. Stay tuned.