“When the night has been too lonely
and the road has been too long
and you think that love is only
for the lucky and the strong
Just remember in the winter
far beneath the bitter snows
lies the seed, that with the sun’s love
in the spring becomes the rose”
Song by Amanda McBroom and Lincoln Mayorga
I think I am becoming a bigot.
Maybe I am just flattering myself and I have always been a bigot, but you don’t get to judge me. Not until you have sat in a room watching the Taiwanese intake nurse from Hospice, whose English you can barely understand, struggle to make herself understood to your mother’s Filipino caregiver, whose English you can barely understand. I want to scream “How can I make good decisions when I cannot understand what you are saying? For God’s sake in matters like these is it too much to want to deal with a person whose English is clear enough for me to know what is being said?”
Last Friday I put my mom on hospice. Saturday, I took her off. The intake nurse kept saying mom was borderline to go on hospice and they would probably take her off again in two months. When the nurse went through my mom’s meds, she discovered a 60-day supply of unopened medication boxes. I asked the Board and Care Home’s owner about it. She told me “Of course, they were appropriately giving her the medicine. Your mother must have had some extra.” An extra 60 days? I am quite sure that it would not be okay with my mother’s medical insurance, but I am not sure which upsets me more, mom not getting her meds or being lied to about it.
When I got home, I called mom’s insurance company and was told if she went on hospice, she would have to dis-enroll from her insurance plan, go on Medicare Basic, then get a Supplemental plan to cover Medicare D. And, she could no longer see her doctor, who is also my doctor and treats the whole family. The topper to all of that was if they removed her from hospice in two months, I’d have to jump backwards through all those same hoops again.
Have I mentioned I have the best doctor in the world? In a panic, I emailed her at about 10 pm Friday night. Saturday morning, I received her email saying: “wait a couple of months to sign your mom up for hospice and see what happens.” After having watched the intake nurse take four hours arranging for a bed, bedside table, chaplain visit, social worker visit, signing mom up with their doctor and arranging to have her meds covered, it never occurred to me that I could say “Stop. I’ve changed my mind.” I could. I did and they (Vitas Hospice) could not have been nicer. They revoked mom’s enrollment and assured me that when I thought she needed it I could re-enroll at any time.
The Hospice Chaplain, who had the revocation papers for me to sign, met me at mom’s Board and Care. (This will sound like more of that bigot issue I spoke of earlier.) I walked into the Board and Care to see my mother in a conversation with the chaplain. This was the most engaged discussion I have seen her have in over two months. It then occurred to me that the chaplain was also the first English speaking Black woman my mom had seen in a good long while. I blame myself for not thinking of this earlier. The Board and Care’s big screen TV is usually tuned to the Filipino station and the caregivers speak Tagalog to each, so my mother has had little opportunity to hear English spoken in almost 18 months. It was no wonder she had less and less to say.
Anyway, after conversing with my mom, the chaplain agreed it was too early to place her on hospice and revocation was a good idea at this time. My new “up at 3am” problem is, how will I know when it is time? The Board and Care staff said they have been giving my mom bed baths because they can no longer get her into the shower/tub. I pay mom’s hairdresser extra to go twice a month to flat iron her hair. The hairdresser pointed out they hadn’t mentioned having any problems showering and washing my mom’s hair.
Staff also said she was unable to feed herself, so they had to feed her. I was there Sunday at lunchtime. The menu was soup, sandwich and sliced banana. I watched the caregiver cut the sandwich and feed it to my mom on a fork. I stepped in and said, “I will do this.” When I picked up the sandwich mom opened her mouth and waited for me to feed her. I said “mom, you can feed yourself.” I put the sandwich in her hand, and she put it in her mouth and ate it just fine and did the same with the banana slices. So, my question became is she getting bed baths and hand fed because she can’t do it or because it is easier and quicker for the staff to do it for her?
The Hospice Chaplain suggested I ask mom’s doctor to write up her care as “Doctors” orders. The stated reason would be to allow the doctor to watch mom’s self-care deficit. The advantage for me is, if they ignore the doctor’s orders, I’d have some recourse. I’ve been assured mom’s care cost shouldn’t go up for this because they are already supposed to be keeping notes about her care. The only difference is now I am requesting they give me a copy in English to pass along to the doctor on a monthly basis.
Remember the God thing I mentioned earlier? I was heading for the mother of all anxiety attacks when I walked into the Board and Care and saw that Black Chaplain. There is no doubt in my mind that she was an angel sent by God to calm me, give me wise counsel and sage advice.
There is one other thing: My friend gave my mom a rose tree 3 years ago for her birthday. I really thought I had killed the plant. I had cut back the old shoots but couldn’t bring myself to throw it out. About a week ago I noticed it had started a new growth. On Sunday, after all the drama of Friday and Saturday, I went out on our deck to see a new red rose bud. My heart filled with joy and my eyes filled with tears as a bible phrase came into my thoughts; “Rejoice with me, for that which I thought was dead, lives on and is with me still.”