Ten Tips From The Caregiver Trenches, No. 5

Top Ten Tips for Caregivers, No. 5

Fifth in a Series Detailing Our 100 Most Beneficial and Indispensable Lessons

by Kim Keller

My father’s health ordeal was an all-too-familiar one: Too many doctors, too much medication, too many tests, treatments and procedures, and not nearly enough communication and coordination.  A dangerous combination of factors, with chaos and suffering the most likely result.

My sister, Karen, and I realized early on that we needed to be directly and actively involved in our dad’s care.  It clearly makes a difference.

Later on we realized that we needed to directly and actively spread the word to other families, too, and we’re hoping that will make a difference as well.

In that spirit, here are ten more of the most important lessons we’ve learned:

  1. Keep A Daily Log — Tracking all those little details throughout a day can be the key to unlocking a medical mystery.  We noted things like how much our dad slept, what he ate, what type of exercise he got.  We also kept track of any complaints about pain.  There was no detail too small to take note of.  The more specific, the better.  Good doctors and nurses are grateful for the information.
  2. Thoroughly Discuss Treatment Options With Doctors — Talk with your loved one’s doctors about whether they have considered family history, all of the symptoms (or lack thereof), and ask directly what is to be gained by going down a certain path.  What are the potential risks?  Is a wait-and-see approach an option?  Could we try a change in diet and exercise first?  Is there a benefit to medication?  What are the side effects?  It’s important to be proactive in making healthcare choices.
  3. Make Sure You Have A Quarterback — My dad, like many seniors, had a large group of specialists treating him.  Each specialist, working independently, prescribed medications and treatment plans, but none of the specialists was in communication with the others.  No one was really in charge.  The lack of coordination was dangerous and a clear impediment to recovery.  We needed a “quarterback,” that one doctor to whom all the specialists report.  This is the doctor who focuses on the overall health plan, instead of just a segment as a specialist does.
  4. Recognize The Signs Of A Stroke — If you notice any sign of stroke in a friend or loved one — like difficulty speaking, confusion, loss of balance, asymmetrical numbness or loss of movement, blurred vision, or severe and sudden headaches — seek medical attention right away, even if it’s only one sign, and even if the symptom quickly dissipates.  Immediate medical intervention is critical in stroke cases, and if it isn’t a stroke, you may help prevent one in the future.  To learn how to identify a stroke, read our blog “Be Prepared:  How To Identify A Stroke.”
  5. Read At The Crossroads:  Family Conversations about Alzheimer’s Disease, Dementia and Driving, from The Hartford — This guidebook, as well as other safety information for older drivers, can be found on The Hartford website, and it is recommended that families read and discuss this book soon after a diagnosis of dementia.  The guidebook offers suggestions on how to have a good conversation with your family about driving issues.  It also lists warning signs for drivers with dementia, and helps you explore alternative transportation options.
  6. Consider Setting Up Direct Deposit and Payments — Luckily our mom was organized, so after her sudden stroke, it was easy to figure out how to handle her bills.  We set up direct payment for her bills and direct deposit for her income.  We did all of this online so that we’d have direct access to each account (billing statements, etc.), and we created a list that includes log-on user names, passwords, contact information, and account numbers, as well as banking information (account, routing and debit- card numbers) and Social Security number.
  7. Double-Check Hospital Wristband — When your loved one enters the hospital, make sure that his or her name and birth date noted on the wristband are in fact correct.  Nurses are supposed to check this wristband each and every time medication is dispensed, so making sure the information is correct is essential.  You’d be surprised how often this is overlooked and leads to trouble.
  8. Make Changes To Your Home To Fit Needs — We had an occupational therapist from our dad’s rehab center come to our parents’ home to recommend specific changes to the house.  He checked doorways to see that our dad’s wheelchair could fit through it, checked to see if the wheelchair could get in and out of the house, recommended that we rent a hospital bed with a trapeze bar, which would help Dad pull himself up in bed.  Having the occupational therapist come by to make personalized recommendations gave us more confidence in our ability to care for our dad at home.  The OT also suggested many of these changes, too.
  9. Research Potential Nursing Homes — Medicare’s Nursing Home Compare offers a star-rated list of the available facilities, with information from state inspections as well as from the nursing homes themselves.  The facilities are asked to provide data on staff levels and specific information about the clientele, such as the number of residents who have received flu shots, who are losing weight, who are consistently in pain, who have bed sores, etc.  This is a good first step, but basing a decision solely on the various rating systems or recommendations, especially when much of the information is self-generated, may not give you a complete picture of what you’re getting into.  These ratings are helpful but by no means complete, so always visit and inspect for yourself before making any final decisions.
  10. Keep A Daily Journal Of The Small Moments — Karen taught me this — she takes time each night to review her day and she considers what surprised her, what inspired her and what touched her.  The lesson for those of us helping someone we love (or even ourselves) through a serious illness is to not miss the small, special moments in life.  Because even in the most demanding and exhausting times, there are small moments that can warm the heart and make us laugh.   Recognize these moments and savor them.  Write them down, because they will no doubt be the most cherished times, the most meaningful times, and moments that you will reflect back on with great joy.

Kim Keller is the Co-Founder of In Care of Dad.  She lives and works in New York City.  

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