When “life” disrupts living: a boomers guide to elder advocacy and timely care
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 fasttrack 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!
© 2016 Debra Rae – All Rights Reserved
1. ”Stand up in the presence of the elderly, and show respect for the aged. Fear your God. I am the LORD” (Leviticus 19:32). “Wisdom is with the aged, and understanding in length of daysd” (Job 12:12). “Likewise, you who are younger, be subject to the elders. Clothe yourselves, all of you, with humility toward one another, for God opposes the proud but gives grace to the humble” (1 Peter 5:5).
2. “Be kindly affectioned one to another with brotherly love; in honor preferring one another”(Romans 12:10).
3. www.identitytheft.info (Accessed 30 September 2016). Each year, some fifteen million U.S. residents have their identities used fraudulently.
4. “But if anyone does not provide for his relatives, and especially for members of his household, he has denied the faith and is worse than an unbeliever” (1 Timothy 5:8). “Cursed is anyone who dishonors their father or mother”(Deuteronomy 27:16).
5. Learn the vocabulary and the “in’s and out’s” of elder care and advocacy—i.e., Medicare, Medicaid, supplemental/ long term/ life insurances, proper authorization for financial and healthcare intervention, options for various levels of care, availability of community services, professional financial projection to determine when assets will be exhausted under practical and predictable case scenarios, staging living spaces for safety and ease of ambulation. Ask timely questions about hefty buy-ins (redeemable or not)? Qualification standards? Waiting lists? Will institutional care continue after assets are exhausted? To what extent can family members contribute financially? To what degree, if any, are family members held liable for their loved one’s debt, etc.? What about final arrangements? Has the loved one’s preferences been solicited and honored? Have phishing expeditions and scams compromised his or her identity and/or resources?
6. Debra Rae. “A Boomer’s Guide to Elder Advocacy and Timely Care.” TRUTHTalk Beyond the Sound Bite, 4 October 2016. [Link] http://tobtr.com/9438119 (Accessed in archives after 4 October 2016).
7. “Never speak harshly to an older man, but appeal to him respectfully as you would to your own father. Talk to younger men as you would to your own brothers. Treat older women as you would your mother, and treat younger women with all purity as you would your own sisters. Take care of any widow who has no one else to care for her” (1 Timothy 5:1-3).
8. With the loved one’s financial resources in view, establish a general, long-term vision for addressing each progressive level of care:
1. Independent in the family home
1. Independent in the family home with paid assistance
2. Independent in a retirement community (with optional services)
3. Independent in a retirement community supplemented with paid, in-home assistance
4. Assisted living in the primary caregiver’s home
5. Assisted living in a skilled care facility
6. Nursing Care; Hospice
9. “So whatever you wish that others would do to you, do also to them, for this is the Law and the Prophets” (Matthew 7:12).
10. “He delivereth the poor in his affliction, and openeth their ears in oppression” (Job 36:15).
11. “Honor your father and your mother, that your days may be long in the land that the Lord your God is giving you” (Exodus 20:12). “Children, obey your parents in the Lord, for this is right. Honor your father and mother” (Ephesians 6:1-3). “Listen to your father who gave you life, and do not despise your mother when she is old” (Proverbs 23:22). “And do not forget to do good and to share with others, for with such sacrifices God is pleased” (Hebrews 13:16).
12. “Without consultation, plans are frustrated, but with many counselors they succeed” (Proverbs 15:22).
13. “And be ye kind one to another, tenderhearted, forgiving one another, even as God for Christ’s sake hath forgiven you” (Ephesians 4:32). “Be at peace among yourselves” (1 Thessalonians 5:13).
14. “Do not let the sun go down on your anger” (Ephesians 4:26).
15. “Listen to advice and accept instruction, that you may gain wisdom in the future” (Proverbs 19:20).
16. “Moses’ father-in-law exclaimed. ‘You’re going to wear yourself out—and the people, too. This job is too heavy a burden for you to handle all by yourself. Now listen to me, and let me give you a word of advice, and may God be with you. You should continue to be the people’s representative before God, bringing their disputes to him” (Exodus 18:17-19).
17. It’s estimated that the nursing home population will increase some forty percent over the next decade.
18. Examples of information a primary caregiver at some point will likely be called upon to present:
a. Full name (maiden name, too) and birthdate
b. Military service—A veteran or spouse of a veteran?
c. Birth/death certificates
a. List of all doctors, dentists, pharmacists, their contact information and scheduled appointments
b. Chronic illnesses and allergies
c. Key medical history (diabetes, heart issues, bone density, surgeries)
d. Family medical history
e. Prescriptions, OTC treatments and supplements
f. Inoculation records
Insurance Contact Information (Life, Health, Medicare/Medicaid, Renters, Home Owners, Car)
a. Banking institution and bankers with contact info
b. Accountant, CPA contact info
c. Safety deposit (lock box, safe)
d. Debit/credit cards
e. Auto payments
f. Income: Annuities, Social Security, Pensions, Investment, etc.
g. Savings/ Investments
h. Debt (Payments, automatic or manual pay)
i. Home Value assessments
j. Collections/ Valuables
k. Tax papers/history
l. Professional financial projection to determine when assets will be exhausted under practical and predictable care scenarios
Updated Legal Information
a. Attorney contact info (Prepaid and/or Identity Theft services-?)
b. Copies of Will, trusts
c. Health Care Directive; Living Will
d. Power of Attorney
e. Marriage/divorce papers
f. Adoption papers
g. Naturalization papers
j. Current leases
Licenses and Certificates
b. Driver’s License
19. www.annualcreditreport.com (free). Accessed 30 September 2016.
20. “It is appointed unto men once to die, but after this the judgment” (Hebrews 9:27).
21. “Precious in the sight of the LORD is the death of his saints” (Psalm 116:15).