It was 1:44 a.m. on a Thursday morning when the electronic box by my bed started blaring a very loud tune that was way too cheerful for the hour. It meant Mom had pushed her “call button,” a wireless device I had purchased so that she could summon me when she needed help.
I jumped out of bed and, in a zombie-like state, headed for the stairs. When I arrived in Mom’s room (previously the master bedroom), the lights and TV were on, as always.
“What’s up?” I asked.
“I’m cold,” she answered.
Mom complains daily that my house is too cold. At an average of 75 degrees (my heat pump is on its last legs and I can’t get it any cooler), I think it’s rather balmy most of the time. Mom wears long sleeves and a sweater, or wraps up in a blanket, as she goes about her day. But at night, she insists on sleeping without covers. Her feet, especially, must be exposed.
This is the second time she has called me to cover her up. I make a mental note to make sure the sheet and comforter are within her reach next time. I cover her up, and head back to bed.
At 7:24 a.m., the machine blares more annoyingly perky music. I had hoped Mom would sleep until her aide arrived, but not today. She has to go to the bathroom, so I help her get up. She complains again that I took away her bedside portable commode at the behest of her physical therapist. She needs the exercise of walking to the bathroom if she is to regain her mobility.
She’s wet, so we begin the process of cleaning up and dressing. I insist she wash the parts she can reach, and wash the healing pressure ulcer on her bottom with wound cleanser spray. Then I slather her in Calmoseptine ointment — a kind of diaper rash cream for incontinent adults. I check her blood sugar and write it down in the chart I created to track her health and activities.
The hardest part is the compression stockings. I bought her some snazzy argyle ones — and they are just as difficult to put on as the hospital-issued ones. I sit on the hard bathroom floor and finally get them on her.
Breakfast is next — tricky for someone with kidney failure. Not too much protein, sodium, potassium or phosphorus. Cereal with blueberries and coconut milk, coffee with coconut creamer, and a dinner roll with coconut spread (we’re avoiding dairy as much as possible). It seems like a bad meal for a diabetic, but you can make up for the carbs with insulin. There’s no way to counteract the excess phosphorus, protein, and potassium in foods like eggs, oatmeal, orange juice or bananas. A diuretic takes care of the sodium, but we still watch her intake and try to keep it under 140 mg per serving.
Finally, her aide arrives. I fill her in on the morning progress and head upstairs and back to work. I’m lucky that I have a flexible job that permits me to telecommute regularly — otherwise, I could become one of those family caregivers who has to take a leave of absence to care for a loved one.
During the day, I try to stay hidden away so that I can work. The occupational therapist arrives; I greet her and return to work. The home health nurse is next — I have to be there to help Mom answer questions, because she doesn’t remember her symptoms. The nurse checks the sore and declares it healing. Yay! A victory!
At 1 p.m. the aide from an agency that I reserved through a “backup care” benefit offered by my employer comes to relieve the morning caregiver. While I work from home, I have found it difficult to be interrupted every 40 minutes when Mom (who has urge incontinence that is probably due to her dementia) has to go to the bathroom. So I called in extra help until she is strong enough to make it to the restroom alone.
My dog needs to go out, so I take her out to the front yard. When we come back inside, she decides to scoot her butt along the wood floor and all of the throw rugs — making a mess two days after the housecleaner had mopped. I decide to take care of it later and return to work.
The rest of the afternoon rolls along smoothly, with the aide keeping Mom company and helping her out by getting snacks, refilling her water-glass, and making sure she changes position regularly. And of course there are the frequent bathroom trips.
The aide leaves at 5:30 p.m., and I take my computer downstairs and continue to work, in an effort to avoid too many trips up and down the steps. During one of her bathroom breaks, I mop the floor.
After about an hour, I start dinner. I’m putting rice on to cook when Mom calls me to help her go to the bathroom. Again. I get her settled on the toilet and go to check the rice, hurrying to the stove — where I step, with bare feet, on my dog’s bone. The hours of her gnawing on it have sharpened it into a dagger, and it’s sitting on the floor like a jackrock.
I scream with pain as the sharp bone punctures the bottom of my right foot in the arch. I hop around a bit, cursing the bone and the dog. Finally I hop into the bathroom where Mom sits on the toilet.
“Is something wrong?” she asks with a deadpan look when she sees the tears on my cheeks.
“Didn’t you hear me screaming in there?!” I ask.
“Yes, I wondered what was going on,” she said. It was obvious she had forgotten hearing my hollering.
She offers to help me clean up the wound and bandage it, so I hold my foot over the bathtub and pour hydrogen peroxide over it, leaving a trickle of blood going down the drain. Mom applies a bandage, and I help her get up and back into her recliner.
At dinner, she claimed not to be hungry, but ate a steak, rice, and a salad. Then she asked for dessert.
We sit on the porch and I drink wine while she repeatedly asks why I don’t have blinds on the porch. I’ve learned she hates the dark, and insists on pulling the curtains as soon as dusk arrives. I repeatedly answer that I enjoy looking out into the dark. She repeatedly asks if anyone (meaning an aide) is coming tomorrow, who is coming, and what time they will be there. The answer is always the same: “Yes. Ashley. 8:30.” I’m used to the repetition and don’t let it bother me.
By 9 p.m., I’m exhausted and head her to her bedroom. She complains it’s too early to go to bed. I insist that I’m tired and need to retire to my quarters.
The bedtime routine ensues — blood sugar check, insulin shot, cleaning up, nightgown on, teeth brushed. Then the hard part — the adult “nighttime” diaper that her experienced aide advised she wear. Unlike the Depends she wears during the day, this garment has tabs like a baby diaper. She can’t stand up long enough for me to fasten it. Attaching it while she’s sitting causes it to sag. She complains about the sag.
I give my usual answer: “Sorry, Mom, I never had kids. I don’t know how to do this stuff.” She laughs.
Within 40 minutes, she’s in her hospital bed, bare feet propped up. No covers. The woman who has been freezing all day is now overheated, even though she is more scantily clad.
This time, I push the sheet and comforter beside her on the bed and make sure she can reach it.
My glass of wine and I go upstairs — so that we can do it all again tomorrow.
Ginger Thompson is one of more than one million family caregivers in Virginia who take care of a relative at home in order to keep them out of facilities. She feels very lucky to have flexible work hours, the ability to telecommute, and the financial resources to hire experienced caregivers to help her care for her mother, Helen, who suffers from kidney failure and mid-stage dementia. Follow her on Twitter @gingwrites, with the hashtag #ReluctantCaregiver. Her mother’s anecdotes are hashtagged #HelenQuips.