When "life" disrupts living: A boomer's guide to elder advocacy and timely care
By Debra Rae
Chances are, as a Baby Boomer, you'll be called upon, if you haven't already, to undertake the advocacy and care of an elderly loved one. Over seven million Americans, aged sixty-five and older, have long term care needs; and forty-two million Americans—about one in four U.S. households—are currently caring for aging family members. In fact, middle-aged adults, referred to as "the sandwich generation," commonly spend more time caring for their parents than their own children.
Though the task is daunting, valuable information can be gleaned from peers who have found their way through the multi-faceted maze of elder care. Having done so, I've learned nothing, if not this: Growing old is not for sissies, and elder care is no one-person job! Try as you might, you cannot do it alone.
More often than not some crisis will jumpstart the care process. Maybe it's identity theft, a fall, or a debilitating diagnosis. Urgency screams and, like it or not, "tag, you're it!" Whether from a proactive, or reactive posturing (the former preferable), you will take the reigns; and, most assuredly, life will never again be the same for you, or for your loved one.
Not to be caught unaware, wisdom compels us to educate ourselves and, even more importantly, to start the dialogue early and keep it going among family members, our loved one(s), and health care providers. Early on, it's important to fashion a care team, under a designated quarterback of sorts, to oversee and evenly distribute responsibilities that complement skill sets among participants. Straightaway consult your loved one's doctor to establish a baseline for comparison purposes.
From the get-go engage the care team in an ongoing quest for vital information (end-of-life preferences, loved one's story to pass down to grandkids, the legacy he/she envisions leaving; distribution wishes for family treasures, photos, books, jewelry, memorabilia) and, in doing so, log contact information for relatives, neighbors, friends, and health care professionals.
Work at achieving consensus among team members upon balancing the elder's basic rights to dignity and self-sufficiency with the onset of dementia or some debilitating physical impairment. Safety is always the number one consideration. Keep in mind that shifting sands of some "new reality" constantly present. Permanent change, requiring timely intervention, can (and likely will) take place in the blink of an eye. For this reason, you must continuously assess your loved one and his/her surroundings, looking out for red flags that signal and/or fast track that "new reality."
Communication and Dialogue
While the loved one can coherently communicate wants and needs for him/herself, discuss current and potential issues and options. Those who refuse to establish their preferences, while they are able, will of necessity have life-changing decisions (some not to their liking) made for them. For this reason, it is imperative to work through the loved one's resistances—if necessary, with professional counsel. Consult a geriatrics physician to direct you to referral services and/or a consult concierge, occupational- and physical- therapy, nursing care, AARP advocacy, social and community services, church ministries and support groups. For your own wellbeing and edification, join a support group of peers.
In the midst of chaos, relationships no doubt will suffer. Brace yourself for hot-button issues with siblings—e.g., illness, finances, inheritance, distance, persistent stress—and, to the best of your ability, work through them. Identify and avoid rabbit trails by sorting out non-essential endeavors (even if compelling) from essential, urgent tasks that ensure your loved one's safety (always the number one priority). Once that work is accomplished, and as the process unfolds, purpose to enable your loved one's Bucket List and, as applicable, to mend broken relationships.
Team members maintain balance by lowering their expectations and avoiding tendencies to over control and underappreciate. Don't fool yourself: Perfectionism cannot be achieved. There is no shame in seeking help (paid help, if necessary). You cannot do it alone. Moreover, not to take exceptionally good care of oneself puts the loved one at even greater risk. He or she needs you to be present, rested, and fit—physically, mentally, and emotionally.
First Things First: Safety
You do your loved one a favor by anticipating and, then, addressing safety issues prior to some catastrophic event. Many professionals use what's called the ABC Approach (Antecedent, Behavior, Consequence). First, you identify the antecedent—e.g., a wobbly chair. Then, you consider what possible behavior the antecedent triggers—e.g., loss of balance, the consequence for which is a likely fall and injury. To mitigate this problem, you intervene by repairing and/or removing the chair preferably before an accident occurs.
Apply the ABC Approach as it relates to your loved one nutritionally, physically, spiritually, medically, emotionally, and environmentally. Also, apply this formula to his or her personal business, finances, estate, transportation, and housekeeping. Keep in mind that it's easier to alter surroundings than it is to change behaviors; therefore, be proactive in installing handrails (by stairs, toilet, bathtub), increasing lighting with frosted bulbs to reduce glare, arranging furniture to ensure a clear path, removing clutter and throw rugs from floors, locking up poisons, medications, and sharp objects. Trade out flip-flop bedroom slippers, notorious for occasioning falls, with sturdy, moccasin-style alternatives or leather ballet shoes with grip.
Continuous Assessment and Information Gathering
By proactively and continuously assessing your loved one's behaviors and surroundings, you are more likely to prevent the inevitable crisis that, ready or not, forces the hellish, seemingly endless process of alternative placement and long term care.
The perceived threat of interference can trigger in your loved one agitation, confusion, and apparent overwhelm; but investigation need not be overly intrusive. Simply make it a point to notice. Perhaps your loved one becomes increasingly ill equipped to plan and shop for, prepare and consume a healthy diet. Eating patterns, at best, are sporadic; and meals are frequently skipped. Take notice—then, action.
Especially when offers of fresh food and/or a trip to the store are routinely declined, recognize that what your loved one consumes, when alone, is unknown. Take your clues from observing outdated, improperly stored food products and unattended spills. When I tossed outdated and spoiled food from an elderly friend's refrigerator, she later raided the garbage and restocked her refrigerator with it! To the point: An elder's ingrained frugality can prove dangerous.
Fire is a clear and present danger. In one situation, a loved one tried to cram loose wires into stereo speakers in order to get the television going. Thankfully, in that case, wires were not active. It is not uncommon for an elder to forget a pot is boiling on the stove. When my mother began to use her toaster oven inappropriately, we removed it, along with the microwave oven.
While upkeep of the elder's residence need not pass the white-glove test, watch for spilled and/or uncovered household chemicals and cleaning agents, signs of pest infestation, and unsanitary conditions in bathrooms and kitchen. Check kitchen shelves, looking for old lipstick stains on glasses; food residue, chips and cracks on dishes.
When an exhaustive stash of dietary supplements (some without lids) is observed, it's reasonable to assume the loved one consumes medications inconsistently and overdoses on supplements. For example, "memory improvement" pills may have 250% of the daily dose of needed vitamin D, but your loved one is taking up to three additional vitamin D supplements. Not good. Notice loose pills on counters and floors. If there seems to be no rhyme, nor reason for the quantity or selection of pills ingested, your loved one clearly requires intervention in sorting and administering pills—over-the-counter, as well as prescription.
Be mindful of clothes, towels, linens, and dishrags sorely in need of laundering. Look for signs of incontinence. Soiled garments require appropriate treatment to prevent spread of germs.
Often, the caregiver chauffeurs a loved one to appointments and events. If that loved one is still driving, allow him or her drive you instead. You may be surprised at his or her dramatically diminished skills and/or disorientation when behind the wheel. On the other hand, while the mechanics of driving may seem to be in tact, a loved one with onset of dementia is not safe heading out alone. It's time to pull the keys.
Vulnerability to Scams
Perhaps you've addressed personal chaos in your loved one's life by introducing systems of organization on his or her behalf. That's great, but constant vigilance is required should he or she recreate the chaos or otherwise prove incapable of following and/or acting upon plain logic. True, there are times the aged function well independently, but when repetitions and forgetfulness increasingly present, and that loved one demonstrates diminished control over his/her life, you must intervene.
Be mindful that, at some point, you will be called upon to produce vital documents and valuables (i.e., expensive jewelry, coin/stamp collections, etc.), which an elder is prone to surrender, discard, hide, or misfile if not set apart for safekeeping. It's wise, therefore, for a caregiver to find, separate, secure, and gain legal access before those eventualities.
It's thought that identity theft is the most frequent, costly, and pervasive crime in our country. Especially if your loved one is active on the computer, be mindful of scams perpetuated against him or her by cyber-criminals who target vulnerable seniors. To spot signs of identity theft, be current with knowledge of what's in your loved one's credit report.
Stealing mail ranks as the favored method of identity thieves. Securing your loved one's mail, incoming and outgoing, is vital. Additionally, opt out of everything possible—namely, credit offers, junk mail, spam, telephone solicitations, lotteries and sweepstakes.
Death is a natural part of the continuum of life. As a Christian, I know no greater honor than having ushered a number of my loved ones into eternity. Until I join them, I purpose to order my affairs proactively and thereby ease burdens on those charged with my own elder care. In that, I challenge fellow Boomers to do likewise. Our kids and/or friends will thank us for it!
Debra Rae is a regular contributor to The Intellectual Conservative and this publication. © 2016