A Caregiver’s Story: Giving Back as I Take Care of Mom

Taking care of aging parents is now the new normal for many adult children.

EDITOR’S NOTE: Laurie Johnson is a longtime permanent panelist on Talk Ten Tuesdays and a member of the ICD10monitor editorial board.

I took my mom to the emergency department (ED) on Sunday afternoon due to shaking chills. She was not running a fever and did not seem to be ill, but I could not stop the shaking. My mom is 88, and when she had this problem before, she was diagnosed with a bile duct stone. In the ED, bloodwork, a chest X-ray, and CT of the abdomen were performed. After five hours, she was discharged home. 

On Monday, her family doctor called and said that we needed to return to the hospital, as her blood cultures were positive. We went back, and she was admitted. Her blood cultures were growing gram negative and gram-positive bacteria. She was started on broad-spectrum antibiotics and fluids.

I have been caring for my parents since 2006, when my father was diagnosed with Parkinson’s disease. My father passed away in 2013. My mom was diagnosed with Alzheimer’s disease shortly after.

When my parents built the house in which we are living, they planned to live on one floor. The house does have a second story, with two bedrooms and a full bathroom. When my father was diagnosed with Parkinson’s, a walk-in bathtub was installed. The bathroom is now completely accessible. I am eternally thankful that this is the case, as it has promoted safety for my mom and myself.

It takes a village to raise children – and to care for elderly parents. I am predominantly her caregiver. I do have a part-time sitter who stays with her a couple of days a week. The sitter has stayed in the hospital with my mom from morning until mid-afternoon. I have been going to the hospital from mid-afternoon until 9 p.m. to keep her company.

I do the wash, housekeeping, and yardwork, and make three meals a day. Members of our church family stay in touch with both of us and provide companionship.

My healthcare experience has been of great value in being an advocate for my mom. Knowing how healthcare works has been invaluable. When we were in the ED for hours, I was able to get her fed. I have been able to speak to the healthcare professionals and understand the tests or procedures necessary, and be able to prepare my mom. 

Fortunately for my mom, I had changed her insurance to a Medicare Advantage (MA) plan. The MA plan has covered her medications and does not require a monthly premium. This episode is her first hospital visit since her insurance carrier was changed, so I will be prepared for incoming bills. This episode does not fall under the No Surprises Act, so I do not have an estimation regarding how much it will cost.

Here are my recommendations for those of you now faced with the same challenge:

• Be familiar with your parents’ healthcare coverage;
• Become familiar with your parents’ primary care physician (PCP) and other physicians that participate in their care;
• Be prepared to have someone stay with your parent while they are in the hospital to ensure that someone can advocate for them;
• Ensure that their end-of-life plans are established; and
• Survey your parents’ home to ensure that it is safe. The clutter should be removed, and carpets may need to be moved to reduce tripping hazards.

It is not easy to care for your elderly parents. Yet I believe that my mom and I have gotten closer. I frequently remember my grandmother saying, “Come and see me when I am alive, not when I am dead. I can’t talk with you then.”  

I want to ensure that my mom feels safe and loved during the remainder of her life.