Building Your Care Team

Montrose Daily Press [March 19, 2017] Kathryn R. Burke

So, you’re a Caregiver. Trying to go it alone. Not working all that well, is it? Why is that? Experience has taught you can manage family illness or infirmity just fine by yourself. When your kids were sick, you got out the barf bucket, soothed, cuddled, put up with cranky, and waited it out. If hubby got the flu—and was a nasty patient to boot—you practiced patience, sprayed everything with disinfectant, and dispensed heavy doses of chicken soup and cold and flu meds. And waited it out. When mom fell and broke her arm, you went by every day to tidy up for her, share a cup of coffee and conversation and cheer her up a little. Until she got better. When your workaholic dad retired and was miserable because he had nothing to do, you carved out a little time to play golf or go fishing, until he found new friends and new ways to stay busy. Past encounters with Caregiving were short-lived. The patient recovered.

Caregiving for someone with a prolonged or terminal illness or disability is a whole new ballgame. The old rules no longer apply. Recovery is not on the immediate horizon—if at all. The patient isn’t going to get better, and over time, will probably get a lot worse. Meanwhile, you probably aren’t equipped do deal with the situation, let alone know how to handle a chronic, long-term, irreversible condition. Throw in some dementia, which is likely if your care recipient is elderly, and you’ve got your hands full. If you’ve got kids at home, or are still working, your situation becomes overwhelming.

So, yeah, if you’re on this journey alone, it’s not going too well. The longer you try to do everything yourself, the harder it gets. Caregiving can do you in—literally. Many Caregiver’s die first. Don’t believe me? Google it. Caregivers are at risk. If you’re a Caregiver, you’re on that risk list.

You can’t go it alone. Ask for help. It’s a sign of strength, not weakness. Ask, then start building a Care Team to ride to the rescue.

How do you do that? Start with your doctor, who can refer you to medical specialists, visiting nurses, CNAs, home-health aids. These people will relieve you of certain medical tasks, which can range from managing meds to changing Depends. Add occupational therapists to help make your home safer, and physical therapists to help make your care recipient’s life easier.

Because the situation is stressful, and often a cause for depression (and health issues of your own), you toss your own doc, a psychologist, counselor, maybe a pastor or priest. Have you both got your wills written, medical directives in place, insurance in order? Contact an attorney, your insurance agent. Money management a problem? (It always is!) Hire a bookkeeper. When you’re overwhelmed, it’s easy to forget these people are there. They can take care of the practical stuff, so you don’t have to. Hook up with a homemaker help agency, to take care of housekeeping chores and lend you a hand with care. Call on family and friends to visit with your care recipient, and provide you with respite so you can do something for yourself.

If you need help finding people to help, join a support group—it’s made up of ‘been there, done that’ people who have practical suggestions. And, call on your secret weapon, Amy Rowan, Lead Options Counselor at Region 10. She’s got the resources you need. As you call on and count on all these folks, you realize you’re building your Care Team—always a work in progress.

[May 2017 Update] Kathryn R Burke was the topic speaker at the 2017 Caregiver’s Summit, sponsored by AARP and Region 10 (Western Colorado), “Building Your Care Team.”  Burke is the author of the Caregiver’s Journey series, Navigating the Path and Building Your Care Team.  Both books available here.