Part 3 of 3 of yesterday’s post.
My night on duty Mama called me upstairs only once, and not until nearly 4am, but I hadn’t slept well waiting for her to call me, and thinking she was when she was muttering in her sleep. The response took 47 minutes; I could not get her comfortable once back in bed. Then I couldn’t get back to sleep.
I dreamed of two young deer—”friends” of mine—crossing the interstate. I had pulled to the center median and gotten out of my car, screaming at them to get out of the road. Suddenly I looked up to see a semi on fire careening wildly out of control heading straight toward me. I woke up as I was trying to reach my car to drive out of its path.
I texted Rebecca my dream, and she replied that she had been thinking about what an awful circumstance it would be if something happened to one of us and Mama wasn’t in place somewhere. My phone rang as we were chatting. It was M, our primary paid caregiver. She woke in the middle of the night in immobilizing back pain. She couldn’t come to work again at this level of care, not that day, not ever. I called Rebecca in shock. She said, “I didn’t think about what if something happened to M.”
An hour later I called Rebecca to come to the house. I was in a meltdown when Mama called to get out of bed at the same moment the substitute caregiver rang the doorbell while I was on the phone with her supervisor who was telling me the sub was on her way—I didn’t get a chance to say we didn’t need her to come, that I couldn’t deal with a new person at that moment—and the hospice nurse was due soon. Rebecca left her planned morning at work and came.
I was trying to get it together when the hospice nurse arrived. At our spur of the moment whispered request, she opened the conversation with Mama about moving.
“Your daughters are worried they can no longer keep you safe at home,” L told her, “and they are getting really tired. What are your thoughts about that? How would you feel about going somewhere that you could be safe?”
“I worry about them, too,” Mama said with tears in her eyes. I think the tears were more about not wanting us to give so much of our lives to her than about moving, but who can be sure.
Wanting her to know we weren’t going to abandon her, I added, “We want to be able to just be your daughters, to listen to your stories, to read to you, to share our lives with you. And to know you are being well cared for when we can’t be with you.”
L described some of the Adult Family Homes and asked her what she thought. “That’s good,” Mama said; then added, “Would it be very temporary?” L skirted the question.
L proceeded to call, on our behalf, five owners of preferred homes, some of them with multiple homes, as well as the preferred larger facility. None has an opening except the home that is our last choice. “It’s wonderful care,” L said, “and creepy decor: French Provincial with dolls.” It’s also 25 minutes away.
That afternoon, Rebecca and I went to visit it. We couldn’t imagine putting Mama there, both for practical reasons and because, as the hospice social worker said, it looks like Liberace’s living room. I looked around for candelabras. Back to square one, the square that contains only us and Mama and a brand new caregiver with few available hours.
The phone rang as I was preparing dinner. It was J, the caregiver. She had called her friend K (a woman who did housecleaning for Mama some years ago, and cared for a friend until she died) who had referred J to us. K is the one we almost had following our first hospital stay, who had to back out after initially agreeing to work with us. She is available again and wants to help! I have worked out a 40-hour schedule for the two of them, pending approval. And J has found two other caregivers she knows with hours to give. Now we’re thinking, with full days covered during the week, maybe we can keep her at home until an AFH we like has a bed. We are on waiting lists. Of course that means scheduling and training and keeping track of hours and… And still cooking dinner and getting up in the middle of the night and being confined to home evenings and weekends.
I was giddy with excitement at getting my writing morning and yoga in Olympia back, after a month away, thanks to Rebecca offering to be at the house in the afternoon. I drove through the beautiful foggy morning and arrived at the cafe as the fog gave way to sun. I was later than usual, but it didn’t matter. I grabbed my bag from the seat and noticed it was too light. I didn’t have to look. I had forgotten my computer. My reaction wasn’t pretty. Just. Too. Much. Rebecca, bless her generous heart, responded to my sobs and offered to bring it to me—blowing off work for me again.
When I got to yoga I learned my much loved yoga teacher has to switch her class to a time I can’t go. New caregivers, new yoga instructor, same Mama.
When I got home K called, she had remembered something. She had been called for October jury duty. (So was I. They must have drawn from residents of this hill we both live on. Neither of us have had a response to our request for exemption.) Maybe she will be available to us, maybe not. If I don’t get an exemption, I will have to engage in civil disobedience.
Meanwhile, Mama is in increasing pain and depression. Rebecca and I are tired.
As I waited for Mama to finish brushing and flossing her teeth last night with her non-dominant hand, leaning against the counter with her feet spread wide to stabilize herself, I stared at this picture of her and my father that sits on her dresser. She used to be young, she used to be different. It is surreal, this end of life thing.
8 thoughts on “Roller Coasting”
It does feel like a log jam of complexity, and that the log jam is shifting a bit. Choose one of those homes–the one you really want her in… focus your energies on it… invite the universe to move on your behalf. And thank you for your incredible honesty here–and before–and coming.
Excellent idea. I may have to just go without Rebecca. Coordinating her rare availability and mine is just too hard. And you are welcome; I’m glad it feels honest and not just disrespectful, though it’s probably a fine line.
Gretchen, I follow you when I get a chance which is sort of slim these days. I really don’t know how you keep up with it all. Courage & strength are definitely on the top of your list. Hang in there.
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Thank you, Marjorie. I’m glad to have you here whenever you can stop by. Your latest post is sitting in my mailbox waiting for me. 🙂
Gretchen….I continue to be amazed when reading about your difficult (I know there are better words to describe it 😕) journey. Answers to unasked questions and unsolicited advice is not what you seek, but words of encouragement will hopefully lift your spirit some. You are tired/ exhausted, but I pray you have the strength to persevere. You are bold while dealing with challenges very few families have to deal with. You desire a relationship as a daughter, not a care worker….you and your sisters are the best daughters a mother could have. When I was in practice I told many sons and daughters that became care support for parents, grandparents, spouses, and others, that, when your (underline your) health becomes affected, it is time for full time outside care. I hope those are words of encouragement and not just unsolicited advice. I mean well. Blessings on you as you travel along this path. John
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Thank you, John. I appreciate your words, and knowing that you are reading my ramblings. I know you are well acquainted with caregiving. So far, I don’t feel like my physical health is suffering (though I must get back to yoga or it will be), but my emotional well being is. And for how long can one be sleep deprived without feeling the effects? The point is, we all know that this level of caregiving to the exclusion of life-giving activities will eventually take a toll. The trick is not to wait until that happens. Right? Thank you so much for writing. That you do makes me a little weepy. G
P..S. If those who follow my blog, and with whom I have become acquainted simply because I write and they read, are any indication, there are a great number of people who doing this level of caregiving and beyond–and for much longer than I have been. I’m grateful for the company, and wish there were another way through this.
I want to call you brave for telling this story. It is heart wrenching and complex and it can’t be easy. I still have both of my parents. I’m lucky and I try to never lose sight of that. Reading your words I am reminded of what others close to me have been through and what I may be experiencing soon enough. Thank you for the thoughtful sharing. I found you through a trip report on WTA and I hope someday I have the chance to join you on the trail. Sending you white light on your current journey. Glad you are caring for you, too.
That is so cool, Bonnie! Thank you for letting me know how you got to my blog. I always wonder how readers find me. I never would have guessed on the WTA. This brave new world is going to become quite commonplace in our generation, I think. We have gotten too good at medicine, and not good at not knowing when to leave it be. Our generation needs to figure out what to do with us aging Boomers. The next generation needs to learn how to not let it happen to them. Thank you for reading and writing, and for sending light. Good to meet you. Gretchen