The most recent phone call came early in the morning – the bad ones always do. “We’re taking Mom to the hospital,” my brother said. “She fell on the sidewalk and is in a lot of pain.”
None of us wants this call. And if you’re like me and reside four time zones away from a loved one with Alzheimer’s Disease, your panic will start to rise as soon as you hang up the phone. How bad is it? Can I get away? How quickly can I get there? Will I get there in time? Can I afford another flight? Will she still know me after this?
Being an Alzheimer’s caregiver from miles away is not for the faint hearted. For some of us, we can rely on another parent or siblings closer at hand to take lead immediately in times of an emergency. Without a doubt, these care givers need our help and support. Others are less fortunate and know that nearby family members are unable to take on the duties. In either case, those of us living long distances from a loved one affected by dementia experience additional stress simply because of the uncertainty distance imposes. In this context, “long distance” is generally accepted to mean “more than one hour’s travel time distant from the person that needs care”. The average long-distance caregiver lives more than three hours away from their impaired loved one.
For me, the travel occurs by air and the minimum elapsed time is thirteen hours. As a long-distance caregiver I need to be able to manage through the initial panic, through the medley of emotions. I need to be able to move toward developing a crisis management plan. The moments after that call are not the best time to be making decisions. Objectivity seems to evaporate when the adrenaline is surging.
Caregiving across miles takes careful care preparation. Planning should be addressed during periods of relative stability. Accept that you will be confronted with a crises at some point; you will inevitably receive the phone call. Now, imagine how reassuring it would feel if you could hang up the phone and reach for your binder of nicely-organized information to guide you through your next steps.
You might wisely turn to the section labeled “Contacts”. And if you’ve prepared for this emergency, you might just find that you have the contact information right there to make the next few phone calls that will provide you with enough information to keep your panic at bay for as long as it takes you to arrive on the scene. Gather information instead of merely anxiety.
As I scan through my own contacts list, I see dozens of entries with area codes located 3,500 miles east. What I’m reassured to see is that there are listings for my mother’s old and dear friends, members of her church, women she volunteered with at the hospital for 20 years, neighbors and an entire constellation of cousins: first cousins, second cousins and third cousins.
Ever since my father’s death and especially once mother began her decline, I have made a habit of listening much more attentively to the names of the people who inhabit her life. Ours is a small family, and so I was well acquainted with most of the family contacts. What I didn’t know were the names of all of her neighbors, her friends from her volunteer activities, members of her church community, every health care provider or the owner of her favorite nearby diner. I didn’t know anything about these people, what kind of expertise they held, or the degree of affection they had for my mother. Over time, I mined our conversations for this kind of information. Over visits back East, I made her friends and acquaintances my own. Eventually, all of this information found a home in that binder named “Mom”, in the section called “Contacts”. Without knowing it, I was preparing for my future of long distance care.
The experts might refer to these people as a “care network” – a concept that is as useful whether you provide care locally or across a continent. To those of us at a distance, identifying and cultivating the network is essential in fostering some measure of peace on this difficult path.
Know who is available, and what they can do. Your loved one has or once enjoyed a community that exists separate and apart from you. Take the time now to learn who inhabits it. Listen during phone conversations for the names or associations that occur regularly. Discuss this with other family members; they hear things differently than you do. Track down phone numbers and addresses for reliable contact information, and keep these current. The individuals who form this community network are wonderful resources. They may be extended family members, church members, neighbors, former neighbors, long-time friends, former colleagues and care providers. The point is to have names and numbers at the ready when you face the inevitable crisis, so that you have someone available to serve as your eyes and ears. Trust that they will police their own boundaries of availability. If one declines to help when called upon, turn to another with good grace. Another opportunity may arise.
When I got that call, I hung up and dialed Mom’s friend from her volunteer days. The friend worked at the hospital, though not in a medical role. I asked if she would check in on Mom and let me know how she looked. When I called, we hadn’t spoken in years. Yet she immediately told me she would be happy to go check on my mother when she went on her next break, and assured me she would call me afterward. She soon reported that mother was confused and in pain and didn’t recognize her, but that she was conscious and would be spending the night for observation.
With that call, I knew Mom would survive this crisis, that I would get home in time, and that when I arrived I would be useful even if it was simply in the role of the “kind lady” who Mom sometimes sees. It’s much easier to endure the travel with that knowledge at the start.
Pamela R. Kelley is a full-time caregiver after thirty years variously spent as a journalist, lawyer and justice professor. She resides in Anchorage, Alaska.
Original content Pamela R. Kelley, the Alzheimer's Reading Room