Top Ten Tips From The Caregiver Trenches

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

by Kim Keller

After dealing with our father’s illness and death, Karen and I became passionate about helping to empower other families facing similarly devastating healthcare crises.  That’s when In Care of Dad was born.

During the development of our website, our mom had a stroke, which made us even more committed to our cause because we utilized many of the principles of the site and found they had genuine and legitimate value.

In that spirit, here are 10 of the most important lessons we’ve learned:

  1. Be The Advocate — Our overtaxed healthcare system makes medical errors inevitable.  The key to keeping your loved one(s) safer during a serious illness is by getting directly involved in the process.  Be an active partner with the medical team — it makes an enormous difference.
  2. Talk About End-of-Life Issues — No matter how hard it is to have these conversations, it’s vitally important.  Even though our dad had a living will, which is a step in the right direction, it wasn’t enough.  His living will only directed that he not be kept alive by artificial means.  What’s crucial is talking through various scenarios.  For example, you should ask questions about quality of life, such as “Should we continue aggressive medical treatments even if the doctors feel the treatment is no longer curative but simply prolongs your life?”  Generally speaking, there are many such gray areas people fail to address in their own living wills.
  3. Keep An Updated Medication List — This was, and continues to be, our most valuable tool.  Keep an updated list of all medications (including over-the-counter meds, vitamins and herbs).  The list should specify all pertinent instructions (for example: 1 pill each morning with food), as well as the reason why each medication is prescribed (for high blood pressure, for cholesterol, etc.).  It’s imperative to also note any allergies to medication.  Make sure to review the list regularly with each appropriate doctor as well as a trusted pharmacist.
  4. Keep Organized — It’s all about the lists!  We keep a list of all critical information like medication, medical history, test and procedures, contact information, as well as things we need to follow up on, like doctor’s visits or medical billing issues.  We created templates for these lists — take a look at the In Care of Dad section called Checklists & More.
  5. Communicate, Communicate, Communicate — Open direct channels of communication between your loved one(s) and his or her doctors, as well as communication amongst the doctors themselves.  Having you involved is essential to make sure that information and instructions do not get overlooked or misunderstood.  (Your loved one will need to sign a HIPAA disclosure form allowing the doctor to speak directly with you.
  6. Find A Great Doctor — Shop around.  If your loved one doesn’t have the “right” doctor, find a new one.  It’s important to feel confident about the level of care.  Don’t hesitate to make a change, if necessary.  Trust your gut!
  7. Prepare For Doctor Visits — Keep a running list of questions and concerns to guarantee nothing gets overlooked during the limited time you have with the doctor.  Discuss with your loved one all of the issues that need attention.  Talk through symptoms, concerns and questions.  Doctors are busy, and patients are often reluctant to slow them down in any way, even if it’s just to ask for an explanation — something that patients are certainly entitled to.
  8. Watch For Medication Side Effects — Both of our parents have had serious complications stemming from medication side effects.  The issue is a lot more common than you might imagine.  One of the best pieces of advice we ever received was:  If you see a change in your loved one’s physical comfort (itching, shortness of breath, dizziness, etc.) or in behavior (agitation, confusion, disorientation, etc.), ask the doctor if the problem could be a medication side effect.  You’ll be surprised how often the answer is yes.
  9. Understand The Insurance — Our dad ran out of his Medicare coverage for hospitalization and rehabilitation, but we didn’t even find out until 16 days after the fact.  It would’ve helped if we knew about Medicare’s Coverage Database before that happened.  The database is easy to use and clarifies financial obligations before out-of-pocket expenses start piling up.
  10. Remember To Breathe — Simple as it seems, stress can actually make us forget to breathe.  I catch myself not breathing all the time.  When the realization hits me, I stop everything and take 10 deep breaths, exhaling slowly, and it calms me right down.  Breathing settles the nerves, brings perspective and helps us focus more clearly on what we need to accomplish.  It’s a little therapeutic gift from our respiratory system.

We’ll be bringing you more of our lessons in the coming weeks and months.  As it happens, we came across this information the hard way, but we’re hoping to share and empower other people to help them avoid a similar fate.

 

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



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