By guest blogger: Kay E. Engle
Ms. Engle is a retiree whose offer to care for her aging mother began a difficult but unforgettable journey of caregiving, love and understanding. “A Day in the Life of a Caregiver“ brings to life both the rewarding and challenging aspects of caregiving and the relationship between mother and daughter. Engle powerfully describes the daily frustrations as well as the daily victories of the role, and reflects on what it all means.
I squint at the clock by my bed, barely opening an eye, putting off the inevitable – morning. It’s early – 7:15 am – not as early as I used to get up when I was working, but now I am retired. I have “earned” the right to sleep late. It is early by my new caregiving standards, so I stubbornly wait till 7:30 to get out of bed.
I am a person who needs a routine to accomplish daily tasks. So the transition from a 40-hour work week to (literally) 24/7 assistance for my mother required some structure for me to survive. For example, preparing meals at regular times during the day – lunch and dinner (and eventually, breakfast). This may seem trivial, but my goal was to keep her eating, and keep my sanity at the same time. Let me explain.…
She had been living with my sister, but had suddenly lost weight – 20 pounds in six weeks. She “forgot” to eat the lunch so carefully prepared by my sister – or thought she had eaten it when she had not. So it became obvious: I was retiring and she needed more help. I retired on Friday; she moved in on Sunday and our ‘dance’ of relationship and care began.
7:30 – OK, I leap out of bed, grab my robe, call the dogs from my bed and stagger to the living room. Dogs outside, TV on, coffee started, I plop in my chair and wait for signs of life from her room. Sometimes she rises before me and I find her already in the kitchen making her breakfast. I say, “Good morning,” and leave her to eat her oatmeal (rolled oats, she calls it) and toast. Meanwhile, I let the dogs in, watch some TV, shower, make my usual egg, and drink my coffee.
That was easy, right? Sure – the first 30 minutes of the day. Now what? Is there food for lunch, dinner? Morning and evening meds? Incontinence supplies? Money to pay for all this stuff? I check the cupboards – let’s see – we’re out of juice and running low on disposable underwear – a trip to the grocery and drug store is now on my to-do list for the day.
Breakfast over, Mother settles into her chair facing the patio where she can see the bird feeders. I bring her morning meds and a large glass of ice water with a straw and watch her take them, two at a time (she sometimes stashes them in the chair cushions). Two small, furry faces watch me as I follow this daily routine, eager to go for a short walk down the street – only a few minutes – but usually productive in a “poopy” sense.
So, I have had my breakfast, walked the dogs; Mother is comfortable, reading her book – I can leave the house. I don’t like these almost daily trips for meds or food or underwear, but they are part of my new “job.” Why daily trips to the store, you may ask? Some days she goes through an entire package of disposable underwear although sometimes she refuses to change them for hours. She senses they are expensive and she is right, but I don’t tell her the cost. To me, the cost is not the issue – fresh, dry “pants” are a necessity. And certain grocery items are a must if she is to eat sufficiently to maintain her weight, or even gain some of what she has lost. She won’t eat what she doesn’t like.
It’s now lunchtime – 11:30. Let’s see – what to serve? (Her tastes are limited.) I have made a batch of mashed potatoes (her favorite), bought a rotisserie chicken, cooked some green beans (or peas). I put some of each on a plate, microwave it, add some butter and serve her as she waits in her room or the living room. She reaches for her “Krazy Salt” and happily digs in. When she is finished, I whisk her plate away so the dogs don’t get to it first and serve her favorite dessert: fresh raspberries with cream and honey. She always had a sweet tooth.
Fresh raspberries? Even in winter? Aren’t they expensive? Yes – she’s 96 – next question?
And then there are the changes that often leave me scratching my head: for example, for years she wanted hot drinks – coffee, tea or just plain hot water – sipped delicately from an old china teacup. Now, suddenly, she wants cold drinks: water with lots of ice and cold juices. I struggle to understand this change, grateful for an ice maker which provides a steady supply of the frozen chunks. I refill her large glass many times during the day. Automatic ice makers are not familiar to her so she leaves this task to me.
I confess that the inability to fill a glass with ready-made ice cubes is difficult for me to comprehend. How hard can this be, I wonder as I refill her glass every couple of hours? Meanwhile, my siblings question my reluctance to leave the house for more than an hour or two. They don’t ‘get’ our mother’s increasing decline and dependence.
Afternoon – we have small amounts of chit chat. (She is very hard of hearing, making conversation difficult.) I ask her to go out on the patio or for a drive but she usually turns me down. I offer snacks (chocolate is never declined). Sometimes I make quick trips to the store only to hurry back to fill a glass with ice water and start dinner.
4:30 – I serve dinner early for my convenience, not necessarily her hunger, but she is always ready to eat, perhaps due to forgetfulness or maybe a little dementia. Whatever the reason, she waits in her chair, salt shaker at the ready, for her meal. I hover nearby to retrieve her plate when she’s finished and serve her dessert which she eagerly accepts.
After dinner we watch TV or a movie. I turn on the subtitles so she can follow along more easily. Some of her favorites are Driving Miss Daisy, On Golden Pond, and The Whales of August. I love to hear her laugh at some of my – now our – favorite lines: her laughter is music to my ears.
I work hard to respect her privacy, now diminished by our small living space, offering assistance when I sense or see that she needs it. As she declines further, I help her undress, get into bed – arranging her shawl over her – just so – the way she likes it. She thanks me for remembering her ”ways.”
Caregiving means paying close attention to small details – noticing small changes in behavior – struggling to make sense of often irrational thoughts and requests. Caregiving means knowing that “care” includes the preferences as well as the safety, hygiene and health of a vulnerable adult.
Does all this special attention make a difference in the quality of her life? Hopefully. Does it prolong her life as well? Possibly. Is this important? I think so. To ignore the constantly changing health – mental and physical – of an elderly person, parent or not, is not a choice I would want to make. We all want to be independent; none of us want to have to depend on anyone – especially our grown children. Unfortunately, the aging process doesn’t always respect our wishes. So I do what I can, help where I can. And love as much as I am able, protecting her from fear and pain with the help of family and agencies such as Hospice.
But it’s probably never enough – there are inevitable regrets. I am not perfect; I make mistakes. I can’t always understand the changing behaviors and attitudes that occur with age and I admit to some not very pretty reactions to a few of them. In the end, I pray my mistakes will be forgiven – expunged from my conscience by a compassionate God. And maybe, just maybe, I may finally understand the complexities of the aging process and share them with other caregivers.
Can you relate with Kay? What are some of the challenges you face as a caregiver and what gets you through your day? Feel free to share in the comments section below.