Wednesday, 13 February 2019

Care Partner Wednesday--Care Partner Essentials

I watched him travel down the long hallway to our dining room, his halting gait reminiscent of the wedding march. Craig had taken the bus provided to the local grocery story that morning and was now returning to enjoy lunch with his wife. As he drew nearer, I saw a plastic grocery bag in his arms, and I knew what it held. Like a shy schoolboy, he handed it to her, but it's hard to be subtle in a dining room full of curious eyes. She opened the bag to reveal a bouquet of red carnations, and she blushed like a bride at the hoots and applause of those around her.

Craig served as his wife's care partner for the last few years. He went after her when she disappeared into the street and he slept by the door so she couldn't leave without him. He struggled with exhaustion and felt his heart break the day she saw him as a stranger in her bed. Reluctantly, he made the decision to move her to care. Since then, he's eaten lunch and dinner with her, taken her to concerts and even helped her decorate for a birthday party. Craig functions as her care partner, but today with a handful of red carnations and a loving smile, Craig's role remains husband.

Roles are one of the difficult aspects of being a care partner. Craig remains Sarah's husband, but the added role of care partner can be confusing, especially when you need to switch from one to the other several times a day.

Be flexible

Your princpal role--husband, wife, daughter, sister-- remains. You still live that role. However, your role as care partner is now a part of the relationship. You may feel your life as care partner is not what you envisioned for your marriage or the rapport you had with your parent. This new reality may disturb you. Flexibility and the ability to switch between roles will save you.

Be educated

Contrary to the maxim, ignorance is never bliss. Whether dealing with a specific dementia, another disease such as Parkinson's or heart disease, or whatever the medical issue, find as much information as possible. Online you can probably discover multiple groups with a wealth of information for the disease you cope with. These groups often have chat lines where you can ask questions of others coping with the same issues. Remember they aren't experts, but they have experience you can draw upon. Ask your doctor for resources as well.

Be supported

Never try to walk alone. The role of care partner leaves you asking questions, making difficult decisions and wondering about the next move. The future sometimes feels uncertain. If you can talk to others facing the same struggle, others who understand and may have answers, reassurance follows. Find a support group. If a physical group doesn't seem possible, or attending meetings is too difficult, look for an online group. Absolutely don't try to walk this journey alone.

Be thankful

You may look at this heading and say, "Really?" Gratitude for your loved one, even when they are changed by whatever they struggle with, remains important. The husband we married, the sister we grew up with, the mother who nurtured us still resides within. They changed, but all relationships change over years, even without dementia or other diseases. Look for the smile, the sense of humour or the twinkle in the eye that remains. Appreciate the time you have together.

Tomorrow brings no promises.

Care Partner Wednesday--Care Partner Essentials

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