The physician who hired me decades ago was a leader. It took his entire career but against a great deal of resistance, he built a premier healthcare system. Even so, he always had time for me. Whenever I stopped by, he would always pull up a chair. It was as if my activities and ideas were just as important as his. There’s something else I remember. I became his healthcare provider not long after he developed Parkinson’s Disease. He ended up being a frequent user of the healthcare system he built. He had many falls. At times he took his medicines incorrectly, usually because he didn’t like the side effects. One time he fell in the waiting room. But Tom, despite his frailty and declining memory, maintained his dignity. He never felt ashamed, never felt that he didn’t matter, and continued to make his own choices. That’s what I remember most. He continued to live with dignity.
Most of us will become frail at some time before we pass away. This will not be by choice. We do not look forward to becoming dependent and we fear Alzheimer’s Disease. Some of us will feel lonely as loved ones leave and the world speeds ahead. Some of us will feel like we are a burden.
Earlier in our lives, the biggest challenge was to succeed in life. But as we age, we face a completely different challenge. The challenge is to transition to frailty with dignity. How do we replace pride with humility and continue to cherish what life gives us? How do we feel worthy when we can no longer do the things we could do in the past? This is a challenge. I have an older friend going through this right now as he comes to grips with his diagnosis of Alzheimer’s Disease.
This post is about the vital role a caregiver can play. I am not an expert on dignity. It’s not something that I was taught in medical school or subsequent training. But I see it in caregivers who know exactly how to add dignity to a person’s life. That caregiver does much more important work than I do. This is what I see:
The caregiver accepts the person’s emotions without judgment or criticism. Frail patients can struggle with feelings of anxiety, frustration, worthlessness, or anger. These emotions are not helpful, but they are human. It’s worse when a person feels that no one understands. We all need someone to lean on. Just listening and accepting the emotions of another person makes them less painful. “Is there anything I can do to help?” sends a powerful message.
The caregiver honors the person. It’s easy for a frail person to end up feeling like a burden. But just like the physician who hired me, caregivers can make a senior feel valued.
Make time just for me
Use my preferred name when we talk
Help me remember joys in life
Hold my hand
Praise small successes
Include me in your life
The caregiver respects a person’s autonomy. We all want a say in our lives. One way of supporting autonomy is giving a person a choice. I have a specific suggestion. Either/or questions are generally better than yes/no questions. Here’s why: Yes/no questions tend to have automatic responses. A person may say “Yes” because that is an easy answer, even if that’s not what the person means. Conversely a person can be anxious and automatically say “No”. Ask an either/or question instead. This gives the person a say. It can be as simple as asking a person whether he/she prefers ice cream or cake.
I want to share one last thought. It is about the dignity of caregivers. Seniors do not choose to be frail. Many caregivers do not choose to be caregivers. It can mean letting go of things you looked forward to. Adding dignity to a senior’s life is not just about learning a set of skills. It is also a decision to give of yourself. It effects your identity, your emotions, and your choices. It’s daunting to preserve wellbeing and even grow at this turning point. I remember my interview with Ojay. I admire him. Each of you has your own story, some very difficult. Thank you for doing the best that you can. My dream come true is that we give more support and recognition to caregivers. The way society cares for frail seniors needs to change. I work on that every day.
PS: My last post was about a chat I had with Amy Goyer. She described a situation while shopping for her mother. The salesperson talked with Amy but completely ignored Amy's mother. It was as if the mother wasn’t there. I kept on thinking about dignity and decided to put down some more thoughts.