Long distance care giving – the away care partner.
Before my parents moved to an assisted living facility in New York to be closer to my brother and sister, they lived in Florida. I would talk with my parents every Sunday afternoon but as my mother’s Alzheimer’s progressed, my father and I would talk more often when I would share what I learned attending Alzheimer’s support groups near my home in California, but it became clear to both of us, that their living arrangement could not last.
What do you do if you are the away care partner?
Learn as much as you can about the diagnosis. Attending local support groups was invaluable because of the personal experiences I was privy to but also the training that was incorporated into every meeting and I learned. Try to arrange real or virtual visits with your care receiver to assess what is really happening. I viewed my role as the “photographer,” taking pictures of the changes and then suggesting more care when I “saw” things that needed more attention.
Building memories is so important so plan enriching activities. While visiting with my parents in Florida, my mother and I would often go food shopping and one beautiful afternoon we lovingly held hands the entire time, a poignant memory for me as we were both mother and daughter, reversing our roles as we shopped, walked, read labels, talked about recipes and special dishes she used to make; the visit was superb.
My conversations with Dad continued every Sunday, our standing date, to reassess needs as they arose. On earlier virtual visits, I helped my father organize his papers tossing away many of his memories that had now become a burden: CTC – Clean The Clutter.
If your care receivers are going to age at home, explore resources for them for continuity of care. If you decide on home health care aides, provide a “communication book,” an on-going dialogue about what happened and what was going to happen, including expectations: housecleaning, laundry, gardening, grocery shopping, meal preparation or hiring a meal-delivery service, arranging for medical appointments, and providing transportation if necessary. Community service centers and religious groups often provide services and activities. If it is decided to move to a long-term care facility, do your homework first to avoid decision making during a crisis.
In either situation, do not think of yourself as the Super-Charged Super-Power Care Partner. When providing care, there will be legal ramifications; I am not a lawyer but I would suggest reviewing family resouces and expectations. If you are employed, access the rules for Family Care Leave of Absense in your state and with your employer.
Every care situation is unique. Learn as much as you can so sound decisions can be made for the the care receiver and the care partner. There are many resouces to assist you through your journey.