Just as is true in most occupations, the job of caregiving has many faces. Think about throwing the dice. Each time you throw, a face appears with a number. So it is that with each new event in our daily life as caregivers, we may need a different face, depending on the event.
Spouse/Partner is the first face that appears because we have been doing this longest. We are still related to our husband or wife or sister or brother who has Parkinson’s. So that relationship will always be there. We still have the memories of our years together, and that will not change. This face will always be in the back of our minds, even when we need a different one to handle a crisis or problem.
Advocate is possibly the next easiest role to assume. We want the best for our patient so we may need to speak up for them and be their champion at the doctor’s office or physical therapist, or when they cannot speak up for themselves. As Parkinson’s progresses and communication becomes more challenging, this role increases. We are their hero. We are their voice, both with family and with health care professionals. Our face must show determination and resolve to act in the best interest of our loved one.
Nurse is our new face. We dispense medications. We remind our patient about exercising. We help them up when they fall. We steady them as they walk. We cut up their food and prepare their meals. We may have to monitor their blood pressure at home. We may have to clean up after them if they have difficulty in the bathroom. These tasks require the face of a nurse. It’s all in a day’s work for them.
Therapist is a title that covers several areas.
As a Physical Therapist, we encourage them to practice speaking loudly. We count as they walk to keep them from freezing, especially at thresholds. We practice exercises with them at home, as recommended by their paid therapist.
Then there is the Occupational Therapist side. We adapt our homes to their needs with handrails in the bathroom and the hallways. We change our menus to fit their swallowing difficulties. We acquire adaptive equipment such as hospital beds, bedside commodes, shower chairs, to help them around the house.
Sometimes we are called on to be a Psychologist/Therapist. Parkinson’s is not a sprint. It is a marathon. We are in this for the long haul, most likely. But we must maintain hope and a positive outlook. Sometimes that is difficult for our patient, and they may look to us to keep a positive attitude, even as their lives become more difficult.
Another problem with advanced Parkinson’s can be the loss of cognition. Our face needs to reflect a calm attitude and demeanor when our loved one becomes confused. When they ask the same question for the 4thtime in a day, or when they cannot understand simple financial matters, or when they cannot figure out how to open a jar, it is our job to remain calm in that situation. Even in the event of hallucinations, this is true. A calm and peaceful look will assure our loved one that everything will be all right.
The many faces of a Parkinson’s caregiver reflect the need of the moment. Sometimes we must be firm and resolved. Sometimes we must be encouraging and the coach. And other times we must be peaceful and calm. Just like dice, our face reflects the need of the situation.
What faces have you used this week? Thanks for reading and commenting.