A year ago, I started a caregiver’s support group. The goal was to offer a non-judgmental setting for adult children to share their stories. While being the facilitator, my real job was arranging chairs and making sure everyone had a turn to speak.
This was the first insight. Given the opportunity, caregivers have a lot to say.
The drama of aging parents is consumptive and complex. Caregivers are exhausted by endless tasks and wind up isolated. They rarely talk with a group of people who not only want to hear their stories but have deep empathy for their issues. When they do, they are taken back by what they hear and what they say.
Solo caregiving for a spouse takes a toll on both parties. What starts out as act of compassion and loyalty can deteriorate into a role that exceeds the best efforts of one person. Unfortunately, the stress of day to day caregiving distorts a spouse’s perception about how far out of control the situation has drifted. Reframing the situation from a new vantage point can help with reassessing the complexity, burden, and support options. This is why we created the Spousal Care Mind Map.
The desire to do the right thing begins with good intentions. Sometimes that is enough, but in most cases the burden of caregiving requires adjustments in perspective, language and behavior. While the predictable dilemmas of aging are unavoidable, understanding the psychological dynamics of “in-home” care can help both generations reduce the stress of cohabitation.
As the drama of aging parents unfolds, it reveals itself as layers of interconnected dilemmas that resist heroic attempts to keep everything together. Like an unruly Rubik’s Cube, alignment in one caregiver area seems to trigger chaos in another. Just when driving issues calm down, sibling conflict erupts over money. Just when housing accommodations get better, a parent falls and winds up in the hospital.
“But things in this life change very slowly, if they ever change at all…” (The Eagles from Sad Cafe)
In David Rico’s book The Five Things We Cannot Change…” one of the immutable laws of living on earth is that “life is unfair.” Nowhere is this more obvious than in the interaction of siblings over the issue of their aging parents. We are tempted to believe that when adult children are asked to rally around an aging parent, the unresolved sibling issues of childhood would be set aside, and “the kids” would stand ready to partner for the common good. The truth is usually far different and more painful. (more…)
The drama of aging parents takes place in an emotional landscape that can overwhelm us without warning or apparent logic. We tell ourselves we are going to be calm, objective, and detached only to abandon these vows within the first few minutes of struggling with them over even the most trivial matters. And there we are, bobbing corks on an angry ocean of feelings that ambush us time and again. No matter how composed we appear to be to the world, most of us fall victim to what I call “emotional habits.”
I created Caregiver Mind Maps as a “workbook” for How to Say It to Seniors. It offers caregivers simple, effective tools for cleaning up messes as well as optimizing control for their aging parents. How to Say It to Seniors is the “why” with a big dose of “how” while Caregiver Mind Maps is master course on the “how.”
A friend asked me why I created a workbook for caregivers. I told her being a caregiver could be overwhelming with messes piling up all sides. The workbook was about cleaning up messes.
Maybe that meant creating a definitive, up to date list of an aging parent’s healthcare providers including emails, phone numbers and tips on how to work with the office staff.
Maybe that meant creating a definitive, up to date list of an aging parent’s medications, who prescribed them, why, the dose, and which pharmacy dispensed them.
Maybe that meant compiling the real story about an aging parent’s driving to discuss with their doctor who might be able to help the parent become a better drivers or avert a tragic accident.
Maybe that meant compiling the real story about how an aging parent’s determination to be a solo caregiver is taking a heavy toll on both spouses without outside help.
Maybe that meant compiling the details of what it takes to keep the home, condo, or apartment operational if something breaks or gets lost in the shuffle.
Maybe that meant offering a way to visually present “unavoidable decisions” to an aging parent who would prefer not to talk about it until “something happens.”
Much has been written about these issues, but words alone are not enough. Caregivers need simple and effective tools to help them clean up messes in a world of competing obligations, increasing complexity, and inconvenient timing. And that’s why I created the workbook…
Having a system to keep track of an aging parent’s medications is essential for their health and safety. As people age, they typically take more medicines. Older adults (65 years or older) are twice as likely as others to go to emergency departments for adverse drug events (over 177,000 emergency visits each year) and nearly seven times more likely to be hospitalized after an emergency visit. This is why we created the Medication Census Mind Map.
The Medication Census Mind Map offers families a diagram that captures the names of medications, who prescribed them, for what, the dose, how often, with or without food, how long to take, and the dispensing pharmacy. Once completed, this census helps families in four ways:
It reduces the burden and risks of not knowing the big picture. The Medication Census Mind Map provides everyone who involved with the care of an aging parent with an up to date overview of the medication plan. Many times this information is fuzzy, incomplete or only known by a few.
It reduces the burden of caregiving handoffs. The Medication Census Mind Map offers a quick reference guide for other family members who want to lend a hand with doctor visits, calls to providers, or refilling medications. It is especially helpful for coordinating last minute change of plans.
It reduces the burden of integrating medication information. The Medication Census Mind Map serves as an information hub for sending updates to the entire caregiving team.
It reduces the burden of orchestrating a crisis. The Medication Census Mind Map becomes an invaluable resource for coordinating a response to a significant change in health.
How to use the Medication Census Mind Map
Set up the map for an aging parent. Provide copies to other family members and ask for comments and revisions.
Take the completed map to a pharmacist and ask him or her to review the inventory for possible adverse drug interactions or special precautions.
Fax or email a copy of the Medication Census Mind Map to all providers on the healthcare team. The document will become part of the aging parent’s medical file and indicate your interest in supporting the integration of health information. You may want to include a cover memo with the following question:
Is this the list of medications you have in your records?
Are there any additions or deletions you want to make?
Are there any interactions or special precautions we should know about?
Update the map every time there is a transition from one treatment location to another (i.e. hospital back home).
Care Giver Mind Maps is sold in a downloadable PDF format, which allows buyers to print copies of its mind maps as needed. However, some people may also want to compile a “bound” copy of the book as a primary reference. We found the easiest and fastest way to do this is at Kinkos.
The attached photo shows a Kinkos binding we did using a small coil spine and a frosted plastic front and back covering. The book’s front and back cover was printed on matte photo paper with the rest of the book printed on “premium’ inkjet paper. The binding part cost less than $6.00.