Fourth in a Series Detailing Our 100 Most Beneficial and Indispensable Lessons
by Kim Keller
In the summer of 2006, our dad died after a long and devastating illness. As with most difficult journeys in life, this ordeal turned out to be a tremendous learning experience for Karen and me. We realized that what we had learned was valuable and that it should be shared to help empower other families just like ours, just like yours. In Care of Dad is dedicated to our father but it was created with you in mind.
In that spirit, here are ten more of the most important lessons we’ve learned:
• Refer to the Beers Criteria — The Criteria, named after geriatrician Mark H. Beers, M.D., identifies potentially inappropriate medications for people over 65. First published in 1991, the list was recently updated, naming 53 drugs that should be (a) avoided all together because of a high risk of adverse effects or limited effectiveness, (b) avoided with certain types of diseases or disorders because the drug could inflame the problem, and (c) used with caution. If your loved one is taking a drug that’s mentioned on the Beer’s List, then discuss it with the appropriate doctor. Keep in mind, the list is just a guide and should never preempt doctor’s orders.
• Interview In-Home Care Agencies — Before you commit to using an in-home care agency, be sure to meet and interview whoever will be coordinating your services. You’ll need to prepare a list of interview questions. Here’s our list to help you get started.
• Make it Personal — Either Karen or I tried to be present whenever our parents were auditioning a new home-care aide. We wanted to be there to describe our expectations for the job, to show them where things were located in the house, to explain how our mom liked things done and, most importantly, to establish a relationship with them. We considered it crucial to make them see that, though our mom might be stressed and our dad might be very sick, these two people were someone’s parents. We wanted to humanize a situation that might otherwise be just another business arrangement.
• Medicare’s Guide to Choosing a Nursing Home — Read this terrific booklet to find and compare nursing homes, to learn about payment for nursing-home care, to learn your nursing home resident rights, etc. This booklet is a must for anyone with a loved one requiring a senior-care facility.
• Make sure that doctor’s orders are being followed — There was actually a nurse at one facility where our dad was staying who told us straight up that she wasn’t going to follow the doctor’s orders because she knew better. Maybe she did, but either way it didn’t give us a good feeling. We also encountered staff members not following doctor’s instructions because they didn’t bother to check on the orders. From ignoring instructions outright to being oblivious of medication changes, this kind of disregard for doctor’s orders was hugely disconcerting. But even in the best-run facilities, there are unforeseen problems. Things fall through the cracks, it’s just a sad fact of life. So we learned to be diligent and proactive, making sure that doctor’s instructions were indeed being followed.
• Always Ask, “Has There Been Any Change In Medications?” — When our dad started to exhibit uncharacteristic behavior — like causing a commotion in the middle of the night — our friend Betsy said, “Check to see if they changed any of his medications.” Quite honestly, the first time she said this to us — she came to say it many times — we thought it was a little farfetched. After all, he was with medical professionals and they’d certainly see the connection if one existed. Or so we thought. But we asked anyhow, and, sure enough, they had changed his sleeping meds the night of the very first incident. They missed the connection because they didn’t recognize our dad’s behavior as uncharacteristic. As happens so often, they simply didn’t know him and had nothing to compare his behavior to. Our dad’s medication changed frequently and often there was some sort of odd reaction. We learned to ask: Has any medication been changed?
• Keep updated medical information — This list should include all conditions and surgeries, hospital stays, medications, allergies, important immediate family medical history (for example, if your mom’s mom had breast cancer or your mom’s dad had diabetes), your parent’s birth date, and also be sure to mention information such as whether your parent has dentures, a pacemaker, a hearing aid, glasses, prosthetics, is a smoker, etc. Basically, try to give as complete a picture of your parent’s physical and medical state as possible. Also be sure to include health insurance contacts and account numbers. We keep several copies of this list: one on mom’s refrigerator door, one in her purse, and Karen and I each have a copy, too.
• Create a Living Will — This is essential. Make sure your loved one has written or dictated a living will, also known as an advance medical directive, regarding any life-prolonging procedures (such as being kept alive on life-support equipment). A living will can also direct organ donation, if this is your loved one’s choice. A living will is not a Do Not Resuscitate order (commonly referred to as a DNR). A DNR form can be picked up in any hospital and must be co-signed by your loved one’s doctor. It’s undoubtedly difficult to talk with your loved one about personal end-of-life wishes, but it’s vitally important to do so. These issues can prove to be divisive to a family if your loved one’s requests have not already been put down in writing.
• Plan Hospital Discharge and After-Care — The transition from hospital to home is critical and yet often hurried through without appropriate deliberation. Patients are eager to get home, and hospitals are eager to get another bed. But, in order to minimize a relapse, it’s important to slow down and create a thoughtful plan. Is there a medication regimen in place? Is the house properly equipped? Is there a special diet? These are just some of the questions that need to be asked and answered. This list can help you get started.
• Keep a Gratitude Journal – It’s so easy to get caught up in everything that’s going wrong in life, especially when you’re caregiving, that taking a few minutes each day to consider what is “right” helps to deliver some much-needed perspective. Gratitude is a secret weapon in the war on sadness and depression. Use it liberally whenever you feel the need.
Kim Keller is the co-founder of In Care of Dad. She lives and works in New York City.
I was the caregiver for both of parents who had Dementia. (at the same time) I lost my Dad December 2010 and Mom August 2011.
I have been in the medical field for 20+ years. I keep thinking had I not know the ropes and how to maneuver in the care giving world my parents would have been lost in the system.
This is a wonderful blog and will be helpful for many! Keep up the good work!