We’ve been devoting a great deal of time, space and verbage to the hand-wringing issues that the aging and the incapacitated — that’s you and me, sooner or later — encounter in today’s society.
Remember? Those issues include longer life expectancy and its longer and profounder impairments, the astronomical costs of late-life health care and long-term living, family members’ social mobility and our resulting isolation, and the decline of neighbor-responsive communities. Those phenomena add additional vital importance to our care-giver/receiver issues.
For good reason we’ve explored some helpful care-receiver strategies, such as personal responders, surrogate fiduciaries, institutional living, making do at home with equipment and help instead of in institutions, investment and insurance management, and health care case managers. But, Hey!, what about the flip-side of the subject: Our or Loved One’s role as caregivers, especially long-distance ones? What to do? Help!
Of course, when we become caregivers we activate the care strategies that we’ve learned from our many sources, including this column (so, we needn’t redundantly repeat those). Sooner or later, when the ball’s in our court, it’s our responsibility to make care happen for Loved One. But, when “so far away” and “can’t get there right away or often enough” have to be in the equation, we must overcome some daunting additional challenges.
The National Institute on Aging, a part of the National Institutes of Health, offers a truly remarkable 44-page booklet, “So Far Away — Twenty Questions And Answers About Long Distance Care-giving”. It’s free and easily available on-line (only) by downloading it to your or a friend’s computer at:www.nia.nih.gov/HealthInformation, or by calling N.I.A. at 1-800-222-2225.
I recommend it to you as both care-giver and care-receiver, and to your reciprocal loved ones and other helpers. And while you’re online, take a few minutes to explore N.I.A.’s vast library of other superb literature for elders, all of it free of charge.
“So Far Away…” tells us seven million (in 2010) long-distance American caregivers -- by the way some forty percent now are men — about those daunting additional challenges, what to think about and to plan, and how best to deliver our share of the care from afar, whatever that share is. A welcome result is: “Anyone, anywhere, can be a long-distance care-giver.” Today’s community-available services and our communications devices now offer us the means to deliver by remote control far more effectively than in our parents’ time.
The booklet adds “distance” to its welcome statement “Gender, income, age, social status, employment -- none of these prevent you from taking on at least some care-giving responsibilities and possibly feeling some of the satisfaction”. It addresses many issues that distance creates, questions that we caregivers might have thought of, or inevitably will wish we had thought of long ago.
And it suggests solutions.
Some of the topics:
“How-to’s” about discovering the need for help, and just what’s needed. The detective work. The signs and clues.
Factors to examine and decide about coordinating with other caregivers, sensibly, comfortably, smoothly. Who best should do what?
Each care-giver’s strengths and limits.
Geriatric care managers: What do they do? Should we engage one?
Finding, selecting, negotiating, synching and communicating with them.
Loved One’s business, finances, paper work: How much control to take over, including decision-making? Specialized management skills? The system for handling the paperwork.
“’Druthers”: Learning and synching with (sometimes a delicate task) Loved One’s values, opinions, wants and life-style preferences, health care directives, and estate plan and its fiduciaries.
Covering L.O.’s care expenses, routine and catastrophic:
Resources, both theirs and public ones. Guidance and information sources. Legal dynamics. Family participation.
Deciding, designing, staffing and equipping Loved One’s living environment: Where, what, whose house, what helpers, how, comfort, adequacy, satisfaction, safety?
Getting and staying briefed about L.O.’s medical developments and care: Communicating with providers. Our role in decision-making.
Abuse: Watching for and dealing with self-harm (dementia and/or personality disorders), harm from caregivers to the care-receiver, and harm to caregivers from the care-receiver and the family.
Defending against defense mechanisms: Denial, confabulation, projection, suppression, rationalizing, etc. — Discovering, penetrating, avoiding being deceived by, overcoming and counteracting them.
Has the time come for institutional long-term care? Convincing, motivating, assisting L.O. with this major, intimidating life style disruption. Skillfully convincing “No!” to change to “Yes!”
Learning about the options and selecting a “home”?
“Being with” dying loved ones -- How to, via remote-control togetherness when we can’t physically be there.
Our own coping: Care-giver’s own feelings, often negative and disturbing ones: They’re important and legitimate concerns. What to do about them?
Our own well-being: Taking care of ourselves, to be able to keep on delivering effectively.
“Breaking the ice”: Starting from the aloof and distant “outside,” moving to join and be amicably welcomed to the “inner circle” of family caregivers.
You’ve noticed that I’ve summarized only the questions, no answers. That’s because, even if you think I’m a skilled wordsmith,
N.I.A.’s specialized professionals present them superbly and fully, right there in the booklet.
There also are several full-text pages of “Some Good Ideas, A Summary Of Things To Keep In Mind”. Their topics:
“Know what you need to know”.
“Plan your visits”.
“Remember to actually spend time visiting with your family member.”
“Get in touch and stay in touch.”
“Help your parent stay in contact.”
“Learn more about care-giving.”
“Gather a list of resources in the care-receiver’s neighborhood.”
And about information resources, there’s a descriptive list of 29 national ones, with contact information.
Locally, knowledgeable resource referrals can come from health care providers, social workers, behavioral counselors, ministers, savvy experienced resources-users, professional fiduciary/elder care/elder law advisors, social service agencies, the Internet, and even public safety responders.
Appropriately, the booklet closes with what I think is a most welcome positive point: “Care-giving -- whether long-distance or hands-on — can be difficult and time-consuming, but it also can be rewarding. Even from a distance, you can help make Loved One’s life easier.”
If you have difficulty obtaining a copy, please let me know. I’ll be happy to download and print it for you at my cost, a couple of dollars’ worth of paper, ink, and machine wear and tear, plus about five ounces’ worth of postage.
Contact Gary Newman at firstname.lastname@example.org. Your ideas and comments are always welcome.