When Parents Don’t Want an Advocate: A Caregiver’s Dilemma

Giving up independence temporarily while working to get stronger will improve quality of life.Giving up independence temporarily while working to get stronger will improve quality of life.

 

One morning last month, a registered nurse in my office received a phone call from “Mickey” who was interested in referring her father for home health services. Her dad, an 83 year old man whom we will refer to as “Bill” had been in the hospital recently.

Bill was pretty sick when he was admitted. He spent time in Intensive Care and was treated with IV antibiotics for septic shock due to an infection of a non-healing wound on his leg. He was very lucky to recover.

Mickey did her best to advocate for her dad while he was receiving treatment in the hospital. She asked that he be referred to a rehab hospital to recuperate for a short time after his hospital stay. He had been in bed for 5 days and she was afraid he was too weak and might fall if he went straight home. Since Bill passed the walking test with the physical therapist he wasn’t a candidate for inpatient rehab. Mickey asked for home health to come visit her dad at home but Bill refused.

“I don’t need help,” Bill protested. While Mickey tried to advocate for her father, the hospital failed to consider that her father might have limited idea into his real needs at discharge and the discharge planner didn’t ask his daughter to verify the information he provided.

Mickey told me that even before spending 5 days deathly ill in the hospital, he needed help with the simplest of tasks at home. When Bill went home, Mickey and her mother did their best to help her dad settle in safely at home. Mickey works full time and her mom has health problems of her own. Now, Mickey was completely overwhelmed as she tried her best to hold things together juggling her job, her own home and her parents’ needs. She noticed that her dad was now short of breath with the most minimal activity, like putting on his shirt.

Mickey waited the long week to her dad’s follow-up doctor appointments. Finally, with the audience of the doctor, Mickey shared that things weren’t going well at home and asked some difficult questions. Wound care orders were never provided when Bill had outpatient surgery in the weeks before his hospital stay. While the doctor admitted he didn’t provide the right instructions, he never admitted he was wrong. The doctor insisted that her 83 year old father was capable of doing his own wound care, even after the hospital admission due to infection.

That same day, the family visited the family doctor. At this visit, Mickey laid out the hospital stay, how poorly things were going at home and revealed some of her own stress in trying to hold it all together. This time she came away with orders for home therapy and nursing visits. Mickey tells me:

People are going to say no because they are proud. My dad was really struggling at home so he was finally open to receiving help. The nurse and therapists were no longer strangers. These were people who took time to make a personal connection and so my parents were open to their visits. They were helpful without being bossy.

Bill allowed the nurse and therapists to visit, they formed a bond. Bill and his wife committed to the agency’s home equipment and safety recommendations, allowed these former strangers in to treat his wound, and provide therapy to make him stronger. Bill was back to his personal best in 3 weeks.

“What do people do if they don’t have somebody?” Mickey asks. Mickey believes this whole experience has helped reshape her caring relationship with her parents. She feels empowered. In the past, her parents would go to the doctor’s office and she would ask questions about the outcome and get vague answers. They weren’t being evasive; its hard to remember and the experience is overwhelming when you are the patient in the “hot seat”. Instructions provided by health care providers can get watered down in translation while trying to capture everything that’s been recommended. Mickey now realizes these types of errors and omitting important recommendations often lead to hospital admissions.

Now, Mickey goes along to keep notes, and to ask the important questions, understand and follow through on treatment. Fortunately, her parents now see that she has helped them and view her as more credible.

Mickey says the real turning point came when she said to her dad: “You have 2 choices. You can be a grumpy, unhappy old man who has to depend on others to live your life or you can be pleasant and appreciative while Mom and I care. We are not taking your independence away; we are helping you so you can get your independence back. You need to give it up, and work to get stronger, so you can get your independence back”.

Health Calls Home Health Agency recognizes and honors the 39.8 million adults caregivers (2015 Report Caregiving in the U.S. research report conducted by AARP and the National Alliance for Caregiving)  in the United States.

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