And Now I'm Starting to Lose It
The heirloom ring, a circlet of diamonds surrounding an opal, sits on my computer desk, unused for over a week. Ordinarily I wear it and would especially for Easter and my brother's visit, but I forgot.
Getting out of bed just now at 8:45 pm, I chose two socks from six littered at the side of my bed, left there because for the last three nights I've been too tired to change into pajamas. I just fell into bed and hours later pulled off the socks and tossed them.
I'm on antibiotics for sinusitis and had only four hours of sleep last night, so I went to bed at 7:45 pm.
But then I remembered to call Connie, Mom's caregiver, and tell her that I made a 2 pm appointment with a doctor for tomorrow, so she could come to work at 3 pm.
"Oh yes, Anne, the doctor came to see your mom tonight," she told me.
"Doctor? Which doctor? When?"
"From Roze Room, maybe 6:30 pm. And she said your mom's phlegm is not caused by milk, and we should keep her on Ensure. And she asked, 'Why is she on hospice?'"
"Why didn't you call me, Connie? I could have been there in five minutes. I made an appointment for her to see a doctor tomorrow about her phlegm, because my brother Bill says it could be white tongue, a yeast infection in her mouth. But I'll cancel it if she saw a doctor tonight."
"Oh, Anne, I didn't think of calling you," she replied. "Anyway, she said keep her on milk and Ensure, whatever she asks for, but not V-8. She said the V-8 could be causing her to have an upset stomach, and we give it to her before dinner, so maybe that's why she's not eating."
"Oh--good that she says Ensure is okay, important to know about the V-8. But I cancelled Roze Room today, after I talked with you," I told her. "I'm getting another hospice. But I would have kept Roze Room if I thought they had a good doctor who would take an interest."
After a few more words I hung up, stunned and frustrated.
In the last six days I've seen two RNs and an intake person, giving lengthy medical histories to each; I've had calls from an LVN and a home health aide and narrowly missed a social worker--after several calls--BUT NOW I MISS A DOCTOR.
The doctor seems to have given excellent advice, cancelling the "Stop milk products" order faxed over earlier in the day by someone at the hospice agency.
But she didn't call first or during the visit to tell me she was there and give me to opportunity to give input.
She wanted the medical history--but asked questions from the caregiver, not me.
I am flabbergasted.
The hospice social worker yesterday, after asking if I or my siblings will want bereavement counseling, said something like, "Let us know if there's anything we can do to help you."
"You are not helping me," I retorted in exasperation. "I am trying to go along with this whole hospice thing, but I'm getting calls and deliveries several times per day from various hospice people who want me to be there and sign papers and give medical histories. This is much more work for me than before I put my mother on hospice. I'm on an antibiotic myself and I have to work tomorrow until 2 pm. I can see you after 2 pm or later in the week, but you are not helping me."
"Oh yes, ma'am, I understand how you're feeling," she cooed. "We can meet later, maybe in two weeks or whenever you want."
So now after all these other calls and elaborate arrangements, a doctor pops in and no one calls me.
Claro: this whole hospice thing is going to be extremely difficult--and the problems have nothing to do with grieving. It's just coping with the onslaught of appointments and mixed up exchange of information and conflicting orders from the various MDs, RNs, LVNs, home health aides, social workers, and chaplains.
Stop milk products.
No--give her as much Ensure as she will drink. Or milk. Whatever she wants--except V-8, her stand-by for the last three years.
After that conversation, I had too much adrenalin flowing to go back to bed, even with only four hours of sleep last night.
My happiest hours today were the six I spent driving to campus, teaching, meeting with students, and driving home. I thought I'd make a quick visit to my mother, return home, take a nap, and write a book review.
Instead starting at 2 pm I spent 1 1/2 hrs. with my mother and consulting with Connie and the med nurse, Chhandita, followed by another three hours on the phone cancelling one hospice service, starting another, consulting with my brother Bill and my sister Emily, and negotiating with the office of Mom's geriatrician, Dr. Sonya Rosen, to get a new hospice, finally getting a call from Dr. Rosen.
I had just cancelled with the second hospice of the day, Vitas, when I called Connie tonight and got the news that the hospice doctor had visited. That ended hope of getting to bed early tonight.
Does it sound like my life is out of my control?
Oh, and I forgot to mention that I squirted 20 cc of pureed cat food down my cat's feeding tube before going to bed.
As Step One in AA and Al-Anon says, "We admitted that we were powerless over __________--that our lives had become unmanageable."
Fill in the blank with the addiction of your choice--in this case, over care of my mother as she enters hospice.
My life is out of control for sure.
If it takes a village to raise a child, it seems to take a village to usher someone out of this world as well.
Everyone in the village is talking at once with conflicting advice or orders, unaware of the last few people who have tossed a viewpoint into the mix.
This hospice thing is going to be one hell of a ride--for me as well as for Mom.