Humans are wonderfully quirky and unpredictable. But certain body functions like eating, eliminating and sleeping are helped by routines, and caregiving needs to respect and follow those routines.
Professional caregivers will cringe, but we’re going to describe home routines developed through bootstrap, trial and error, hoping they might help some.
Too much regimentation would be the stereotype of a nasty institution, like Hogwarts after the notorious lady in pink, Prof. Dolores Umbridge, became Headmistress. None of that, please!
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The situation: Early Onset Alzheimer’s Disease (EOAD); now late stage Reisberg FAST 6e/7 (incontinence), complicated by general weakness, increased time asleep, loss of the ability to walk, wheel chair dependence, but no other major chronic illness.
0700-ish: Caregiver can no longer pretend that staying in bed will lead to more sleep; gets up, daily ablution, coffee, breakfast. Quiet time to get things done.
1000-ish: There may be “vocalizing,” but when checked, she will be asleep. Moves around the wide bed, with padded rails on the outside and foot, long pillows to either side. If one tries to get her up to change now, she will usually be too drowsy.
1100-ish: More vocalizing, may lie quietly with eyes open, may sit up. May fall back to sleep. Once the time seems right, lights and music will go on, along with morning greetings. A change out of PJs and change of disposable underwear (we don’t use the word “diaper”). This could be straightforward or complex. Wet wipes for various places. Facial cleansing towelette. Hair brushed, glasses cleaned. Coaxed into standing at least ten seconds, will usually shuffle to W/C. Passive stretching exercises with both arms.
Breakfast at the dining table, hand feeding bite-sized apple and a soft nutrition bar. Has a nutritional chocolate drink mixed with liquid prescription medication. After eating, moved to an absorbent underpad on a living room chair; will listen to a book read out loud, or watch a British baking show, or listen to CDs. May need pillows and other supports.
1300-1500-ish: Lunch depends on how late breakfast was, and is basically a bite-sized warmed cheeseburger or sandwich hand-fed, with drink. Mid afternoon, move to an underpad on the couch, with pillow supports. Snacks and drinks. May nap. Similar entertainments.
1600-1730-ish: Before dinner, disposable underwear changed again, might be straightforward or complicated. Dinner proceeds while seated on the couch, followed by meds in chocolate milk.
2000-2100-ish: At bedtime, moved from couch to W/C, taken to room, placed on underpad on bed for change to nighttime disposable underwear, wet wipes, perineal protection with an OTC dimethecone cream, and zinc oxide to vulnerable areas. Change into PJ’s. Moved into safe sleeping position using a slide sheet, and another underpad placed under hips. Tucked in, foot rail padded and positioned.
Not every detail is given, obviously, nothing about soiling (that’s a euphemism) or showering (usually helps to have a second caregiver) but most every thing else can be done and is done by a solo caregiver.
We have an autism-trained (not Alzheimer-trained) companion that comes in to help with feeding, communication and monitoring safety, about 20 hours/week. She’s wearing a mask these days because of the COVID-19 surge. The companion does not do any lifting, moving (except by W/C) or changing.
Current configuration, custom rigged disposable underwear, from the inside out view. Left: daytime, with added plastic backed pad, and absorbent booster pad; Right: nighttime with different brand of disposable underwear, plastic backed pad, two thinner booster pads and one thicker booster pad.
One brand of underwear is a store brand, the other for nighttime is a national brand. They are both “pull-up” style, because we found the “brief” style with waist straps weren’t working well for us. The plastic backed “overnight pads” are a pharmacy chain store brand. The booster pads are hard to come by. Most of it all comes via online ordering.
Chores? Yes, they are. Privilege? Yes, it is.
So what happens when the gears and timing don’t mesh? That’s when the practical flexibility and ingenuity of the Caregiving Old Guy comes into play, ever ready for a challenge!
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Janet Wainwright
I really liked this post. Thank you for sharing your experiences. It’s an honor to glimpse the cared for and caregivers life.
ronlouie
Thanks! I realize that this level of caregiving may not be for everyone faced with a similar situation. Providing a few details may help someone decide whether they can or should even try. It can be do-able, and may even be personally fulfilling.