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Complicated Caregiving for Complicated Families

Complicated Family

Today’s posting is from one of our long-time staff members, Gregory Peebles. In addition to his Master’s degree, Gregory is a CSA (Certified Senior Advisor). He has been an integral part of our team for nine years.

You remember it don’t you? When mom was at home, cleaning the house, you and your smiling siblings were at school, dad had a balanced work/home life that allowed him enough energy and leisure to be little league coach, and grandma lived in the converted garage, basically independent, but so loved that everyone agreed she should just move in? Surely you remember that. EVERYONE DOES, RIGHT?!

Wrong.

If you don’t remember life that way, don’t feel badly, because I don’t either, and we’d be hard pressed to find anyone else who could relate to that fantasy even ten years ago, let alone today. If, however, you felt some sort of connection with that icon, it’s because that’s the way the family was until only recently idealized in advertising—upper middle class, happy, and homogenous (which is to say, mostly white)—and we have a tendency to compare those images to our own experience while feeling a sense of let-down when our lives don’t match.

We can all breathe a sigh of relief and let go of those comparison benchmarks, because the American family never was and never will be only the sanitized version; it’s just the version we see most in the media. It’s changing, slowly of course, to reflect a more diverse, if still primarily heteronormative representation; however, family is so much more than the genetic bonds we share with people who look and act like us. Family is forged in the fire of love and sacrifice, and those of us giving care to members of non-traditional or unrecognized families certainly have hammered out meaningful relationships that previously would have been shackles of burden instead of weapons against loneliness.

As the strict definition of family changes to include diverse relationships once cause for social shame (divorce, now legal same-sex relationships, blended families, children born in love, but out of wedlock), it is important to remember that the complicated family is not new. What is new is the larger concession, even reticent, to allow compassionate discussion.

Family dynamics are hard enough to navigate when traveling the well-worn roads of traditional narrative; complex feelings of ownership regarding the care receiver can invade and upend even the most conventional dynamics. What happens when mom isn’t independent anymore, but the kids hate mom’s new wife? What do we do when Dad, non-responsive, has children from two marriages, and both groups are sure they know best? How do we protect each other when we don’t have enough history of what works to move forward with assurance and conviction?

How do we get out of this? The same way we got in: by being open to something new, by being as full of love as we are capable, and by communicating with the people who are important to us early and often. It’s important to talk to your loved ones about their wishes in the event of incapacitation before it happens, so it is especially important for families bound by non-traditional roles to make plans. Below are some suggestions for helping your complicated family communicate more simply.

If you expect to be the recipient of care:

Make it public

  • As many family members as can/are willing to be present
  • Neutral, sober space
  • Everyone gets a voice, even if everyone doesn’t get to make decisions
  • Allow for the possible necessity of multiple meetings

Make it Clear

  • Documents for estate planning
    • DNR – “Do Not Resuscitate” (DNR)
    • POLST – “Physicians Orders for Life-Sustaining Treatment”
    • Five Wishes
    • There are many helpful tools for this online and at our website, creativecaremanagement.com)

Make it legal

  • Print, sign, and have an attorney review the documents so that they “stand up” in court if need be

If you expect to be giving care:

  • Listen listen listen – This is not about you.
  • Be honest with yourself/your loved about what you feel comfortable/uncomfortable honoring
  • Respect the sovereignty of the Individual – If you cannot in good conscience provide the care and services your loved one request, do not impede the process.

Charlotte Bishop is an Aging Life Care Professional and a Geriatric Care Manager and founder of Creative Care Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families in metropolitan Chicago. Please email your questions to info@creativecaremanagement.com.

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