30. ARE WE THERE YET?
We called Hospice the day after our crisis, after David fell, and my struggles to get him up so nearly failed and did me in, the day when barely a word passed between us, and I’d spent it despondent and alone. By alone I don’t mean actually alone, I mean the alone-ness of doing for the man I love who’s food stays on his plate untouched unless I fork it to his mouth, who’s eyes cannot acknowledge my existence because they are sealed closed, who depressed, curls up inside himself. Silent.
“You don’t have to be actually dying for Hospice to help,” the doctor’s receptionist explained when I asked her for names of the providers in our area.
“Interview several agencies and make sure they offer Home Health Care as well,” she advised. “Just know Doctor will give his support if you did decide to go with hospice.”
For two years David and I had pigeon-holed and marked the hospice option, “To be opened later.”
Step one. We chose an agency at random, took the plunge and phoned.
“We’re not sure if my husband’s ready…we’d like some information…your criteria for taking someone on.” I hesitated. “It may well be too soon.”
The agency’s Social Worker was free and would come round that afternoon.
“Just to talk, explain hospice services,” she reassured.
Two hours of interview later, a folder of information under my arm, we watched her car disappear down the drive.
She’d failed to disguise her horror on finding David with his eyes frozen closed. Me, walking backwards, pulling on his hands and guiding him across the room to his chair. I could see she thought his need for Hospice Care a given, and David a fall-risk who should be in a wheelchair full time.
For the first hour she was with us David sat inert, his right leg spasmodically tremoring, eyes shut, nodding his head, occasionally murmuring to show he was alive.
“Damn,” I castigated myself. “I shouldn’t have given him his Parkinson’s meds so close on her visit.” On reflection ot was good the Social Worker saw him when he switched off.
“Have you thought about a commode beside his bed… using boards to slide him from bed to a wheelchair? He should wear the yoga belt at least, and you…” Her sentence hung unfinished her eyes wide.
David transfigured into a sentient human. Fully back, eyes popped open, and with a clear voice he asked an informed question.
“Would I be required to stop receiving care from my neurologist?” David paused, then continued. “Swimming? Choir group? My ping-pong? Chair aerobics at the Senior Center? Walks to the mailbox? The Parkinson’s Think Big and Loud Physiotherapy? Would I be allowed to leave the house for those?”
Without actually telling us VERBOTEN, the Social Worker hedged. It became clear, to qualify for their program they expected David to be more housebound.
We thanked her for her time, smiled, shook hands and saw her to her car.
David and I looked at one another.
“Well?” I asked.
“I’m not there yet,” David sounded cheerful.
“Hurrah. That’s my opinion too. Gosh, I’m so relieved.” I said slipping my arm through his.
It was as if one hundred redwing blackbirds flew in celebration round our heads.
Just the realization David wasn’t yet ready for hospice reignited our hope. We still had a life to live, “and miles to go before we sleep” — to plagiarize the poet, Robert Frost.
WE WEREN’T THERE YET and CHOICE was still an option…
… to walk alone, with or without a walker, a wheelchair or use hiking poles; to sleep in a regular bed, sit in a regular chair, use a regular toilet, roam the house and creep off to his den at will. Then there was our traveling… I listed all the good things going in David’s life, the many things David can, and still plans to do. Fly to France this summer and spend time with the family for one thing.
I don’t mean to imply David is fit, able and together, for each day, each hour of the day, each minute, for without warning and just when I’m gratefully thinking he is so normal, so able, Parkinsons might flip him helplessly disabled. Him onto his metaphorical back, and me, into an emotional vortex. I still can’t get it — the not knowing.
I felt like cheering as the social worker turned onto the main road, and could have leapt over our rooftop, I felt so light. He was alive and wanted to live.
I kissed the top of David’s head — easy to do now his six-foot has shrunk curves towards his feet.
“What about going up the road for lunch. I don’t feel like cooking,” I said.
Energized, David slid out of the car by himself and walked to the café table unaided, picked up the menu and ordered Caesar salad and a Reuben sandwich.
“How about a glass of wine?” he suggested.
Was I sitting opposite the same sad creature I’d found curled on the floor the previous day?
Something changed. We smiled more. Brushed fingers. Saw hope in each other’s eyes. Watched less rubbish on the box. Sat outside in our favorite shade spot beneath the peach tree, laughed at the single fruit clinging to our one-peach tree.
Suddenly the days weren’t long enough.
“Let’s plan on doing more together. What about going to the the Highland Games at the Balloon Park this weekend?” I queried.
Grabbing sun hats, water, and David’s walker we spent the day steeped in Celtic music — Scottish, Irish and Welsh. The keel of the bagpipes, the thrump of boron and drum, the strains of, “…By yon bonnie lass and by yon bonnie brae…the bonnie, bonnie banks of Loch Lomond,” had us ecstatic. Perched on a narrow picnic bench we tasted Haggis, and watched men stagger trying to balance the caber before tossing it end over end.
Among the band of marchers, I watched a kilted woman steer her motorized wheelchair one handed and pump the Bagpipes under her armpit with the other, her cheeks puffed red from making music.
“Wow, David, look at her go. Isn’t she something,” I said pointing her out.
She stretched a swollen leg to the ground and scooted her foot to better position herself. If she was in pain she ignored it. That woman was doing what she loved and having fun.
Oh, for David and I to have her determination and spend more time doing what we enjoyed. Nothing fancy, spend a whole afternoon reading, or listening to a CD, perhaps see a film, take a couple of drives, eat an ice-cream on the Plaza, or go to more events like this.
Back home a couple of days later, tired, I inadvertently clicked an icon on my computer and brought up something called Live Chat.
Gave myself one horrid shock. There in front of me I saw myself as others must….a wrinkled, tight-lipped, harried woman… Nobody I’d want to be around. God, I looked a fright.
“If you make a face like that it will stick.”
So it was true what adults scolded at the Children’s Home. From the look of my scowling face, it had. Stuck. Better unstick it fast, and smile, was my thought.
That evening on the box I heard an expert describe an unexpected side effect of Botox. “…people with depression felt happier, less depressed after being injected in the forehead…” the man went on to explain. “A botox-smoothed brow tricked the psyche into believing it was unworried: no-frown-therefore-I must-be-happy philosophy.
I’d better get smiling. Maybe by smoothing away my scowl with a make-a-happy-face-and-feel-happy philosophy, and holding myself proudly, I would trick my mood. I straightened my back elongating my spine and neck, and strained to lift the corners of my mouth to ongoing light smile glancing in the car’s mirror to check. Did I imagine it, or did I feel less tense?
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Next week’s blog: Hmm?
Previous blogs: Previous blogs:
1.Wearing a Hat from Hell * 2.Back Story before the Tidal Wave. * 3.There’s a Mouse in the Room. * 4.Shape-shifting — Husband to Patient:Wife to Caregiver. * 5.Think your Home is your Castle? Think again. * 6.Vision Quest beyond the Box. * 7.Cats in the Belfry. * 8.“En Guard Messieurs”…Dare me: cross this Line. * 9.Like it or No — Prepare to Play God. * 10.’Tis the Season to be Jolly — not for me it isn’t. * 11.Hello. Hello? Anyone Home? * 12.The Blue Hole — 90 miles ahead. * 13.Disabled — Daft — Demented? * 14.Up. Up and Away…* 15.Humble Pie. * 16.What do I have to Complain About. * 17. Come Back Tooth Fairy. * 18. Promises Promises. * 19. Fly Fly Away. * 20. Refresh. Reboot. * 21. Can this be Happening * 22. Hate when David… * 23. What if…? * 24. Hanuman and I have a Birthday.* 25. Happy and Glorious.* 26. High Time. * 27. * Change?…As good as a Rest. * 28. It’s a Long Way… * 29. Missing Something?