Once
you put on a jacket when it was cold
you took a shower before you got dressed
you made your own breakfast
you knew which shoes to wear.
Once
you built shelves
you repaired the washing machine
and the lawn mower
you fixed the muffler on my car
with a soup can.
Once
you commuted to your office
to help people
you had things to do.
Once
you were someone
I didn’t have to remember.
Sometimes caregiving for a person with dementia becomes so difficult and absurd that the only possible response is— laugh.
Yesterday, I was cleaning out files. The box of paper to be recycled was overflowing. My husband wandered upstairs to check in.
“Can I do anything to help you?” he asked, as he often does. (I am blessed with a sweet-tempered, cooperative demented person, not like some caregivers who deal with belligerence.)
“Well, yes,” I answered. “I need a large garbage bag for these papers.”
“Where are the bags?” he asked. (Are you paying attention? Most spouses would know where to find the garbage bags.)
I told him, “In the cabinet to the left of the sink. They’re in a box under the medium sized bags.” I illustrated the size spreading my arms. “About this big.”
He turned to go on his errand. Stopped. “What am I getting?”
“A large garbage bag.”
“Where are they?”
I told him again. (By this time, I’m already thinking I should go get the bag myself. But he wants so badly to be helpful.)
He made little grunts as he went downstairs–his arthritic knees complaining.
He was gone a while. I moved on to thinning out the notes pinned to my bulletin board.
He came back holding—
three packages of snacks!!
Chip Ahoys. Cheddar rice cakes. Fig Newtons.
“Is this what you wanted?” he asked.
I looked at the snacks. I looked at his face. This dear man, who tries so hard, who vehemently denies his condition. (“I don’t believe it,” he says.)
What could I do? I laughed and hugged him hard and long.
Then I took the snacks and went downstairs to get the garbage bag.
Caregiving is challenging. That’s why I value my caregiver group. We Zoom twice a month. These are the women who understand. Who often can offer resources to assist with a problem.
Here are two excellent resources for caregivers:
Ulster County Office for the Aging 845-340-3456
1003 Development Court, Kingston, NY 12401
Alzheimer’s Association
800-272-3900
An old boyfriend of mine once asked me, “What would be the defining phrase of your life?”
My name is not wrong.
My name is not good enough.
The pink eraser is there
on top of the pencil,
but if I use it,
I am not good enough.
The algebra twists me
into paroxysms of wails
x is unknown
y is imperfect.
I am not A or B, but
my C is wrong, and
I am not good enough.
The big father raises his eyebrow
when I say what I know.
He doesn’t like what I know.
He says I can think it
but I can’t say it
because my truth is wrong, and
I am not good enough.
The yogi man and his ex-wife
tell me how
to bring back a slackening brain,
to fight the blackening blankness,
with COQ10 and mushroom powder,
exercise and cortex power.
Even if I do all they say, all day,
every day.
I will still be
not good enough.
Years ago I read that sorrow affects the lungs. The idea remained buried in a back drawer of my mind. Recently, though, I’ve had cause to unearth this notion while dealing with a persistent health issue.
In December, while vacationing with my husband in California, I caught a bad cold. Normally I would rest at home and kick such a virus in a few days. My illness was exacerbated by an upended routine, long days of travel, and demands to be present for West Coast family gatherings during the holidays.
Three days before our flight back to New York, I realized that it was more than a cold. My chest felt like it was imploding. At the local urgent care I was given a “Z-pack” for bronchitis. Things got a little better until the flight home, when the symptoms got worse. Back I went to another urgent care on a Sunday and was given another antibiotic.
Eight weeks later, I was still wheezing and tired, with stuffed sinuses. The ENT specialist that I visited said I had a sinus infection and–you guessed it–gave me a third round of antibiotics.
The point of this narrative is this: in Traditional Chinese medicine, lung illnesses are connected with grief.
ottowaholisticwellness.ca
I’m a grieving spouse, having lost the future I’d imagined with a spouse who is no longer the person I married. Although I keep active and engaged with caregiving and many activities, I live with an underlying river of sadness, that springs up into my eyes often, sometimes with the slightest surprising provocation.
Grief must be expressed to let it go. We can’t measure the severity of loss with instruments, but only by how strongly it is felt. Unexpressed grief harms the lungs. Coupled with the all the other emotions that caregiving can produce (fear, anger, guilt–see above diagram), caregivers’ health may be threatened.
So how do caregivers cope and keep illness at bay? Exercise, meditation, support groups, Emotional Freedom Technique (EFT)*, time with friends, religious practice: all of these help me stay healthy.
The website below was enlightening.
https://www.chinesemedicineliving.com/philosophy/the-emotions/grief-the-lungs/
*more about this in another blog
Tangled Magic 