My 30-minute outburst: new rage and new grief in a new chapter
For more than two years now, the tone of this blog has matched my prevailing attitudes: grief-stricken, but positive; aware of the unfortunate, but so grateful for all my blessings; sad, but hopeful.
This has not been for show. I’ve sincerely felt this way.
But for a few minutes Sunday evening, I couldn’t feel good about where life has taken us.
I slammed my fist on the kitchen table and hollered into my empty kitchen, “I HATE THIS!” And then I opened my computer and unleashed the following tirade.
I hate being alone!
I hate planning activities and trips to do by myself!
I hate arranging my time around almost daily visits with Evelyn, and I most often do not enjoy being there—not really.
I hate making small talk with the aides, hoping their positive feelings toward me will lead to attentive care for Evelyn. And I especially hate that sometimes the care I’m seeking doesn’t happen. I hate constantly evaluating her care and deciding what’s important enough to mention and what really doesn’t matter.
Liudmila Chernetska at istockphoto.com
I hate spending time there with several dozen folks whose affliction ranges from pleasant confusion to blank stares, aimless wandering, or indecipherable gibberish.
I hate Alzheimer’s. I’m sure I hate it more than Evelyn does. She seems remarkably content reading out loud for hours from whatever magazine or newspaper or random book we can find to place in front of her. She enjoys her food. Sometimes she engages with an activity or project. She smiles at those who greet her.
People compliment her smile. Still radiant. Stiil beautiful.
But I hate the empty shell behind that smile. She seems content to go with most anything put before her. I hate how her quiet spunk has sputtered away.
I hate that she seems not really to know any of us. (Several days this week I asked her if she knew my name. “Uh-huh,” she nodded. “What is it? What IS my name?” I smiled at her to encourage her, but she returned to her magazine without saying a word.)
I hate the heartbreak that comes to those closest to her when they don’t see a spark of recognition in her eyes.
New grief
Until Sunday night I thought my grief had dissipated. I had come to accept that the life we knew together was over. I had quit pining for experiences we’d never enjoy together again. And now, especially since she had moved to residential care, I could plan some nice times for myself with others.
I thought I’d be relieved and at peace when I was no longer in charge of her daily care. And I had experienced some of that, for sure. But Sunday all the sadness plowed into me again. I’m not sure why I hit such a hard wall with such a head-hurting thud.
New chapter
I think it’s because it dawned on me that we were entering yet another chapter with an unknown ending. Evelyn is wheelchair-bound now, at least that’s what we’re trying to create. An army of blood clots invaded her lungs two weeks ago, and now she’s prescribed an anticoagulant; it’s a new, improved blood thinner with a brand name and a very high price tag.
Because brain bleeds are such a threat to anyone on blood thinners, we must try to avoid falls that bump her head. If she’ll stay in the chair, we’ll have a far better chance of that.
The doctors told me her morbidity rate without the blood thinner would be 25-50 percent. I don’t know the exact risk while she remains on the drug. But even with it, I know she is slowly dying, words I’ve never spoken or written till now.
New reality
Another decision we’ve made reflects that reality. Upon the recommendation of the director of nursing at Artis, Evelyn is now receiving hospice care. The suggestion didn’t shock me. Others had proposed it before now. I know hospice care is not just for those facing an imminent demise. “I had a patient on hospice care for six years,” a nurse friend at Artis told me.
megaflopp at istockphoto.com
Hospice gives us the attention of a dedicated hospice nurse, extra care from hospice aides, a hospital bed, a beautiful wheelchair, personal supplies, a chaplain, and a social worker—all free. Why would I turn that down?
But I would have recoiled at such a move even six months ago. We’ve entered a new phase, with a few new losses reminding me once again of the gushing stream of losses we’ve sustained in months gone by.
New morning
I’m OK this morning. Since Sunday I’ve shared coffee and encouragement with a friend walking a path similar to mine. I’ve tutored reading at one church and gone to a conversational Spanish class at another. I’ve had dinner with two other spouses of Artis residents, and I’ve been reminded why I like and value so highly so many of the staff members there. I’ve made plans for future family times. I’ve kept my garden growing despite the blistering heat boiling much of the country this week. And I know I will survive, too.
But it did me good to raise my fist and complain to God for about 30 minutes Sunday night. I hate so much of what I’m facing these days. There’s no virtue in denying it.
Happy moment: Artis hosted a Father’s Day barbecue for residents and guests Saturday, and our daughter Jennifer was here for the weekend. It was a very nice event.