The Long-Distance Caregiver

Managing Care Across Miles

If you're a long-distance caregiver, then you know the drill. You call all the time. You coordinate care from 400 miles away. You spend long weekends or vacation time visiting your loved one and hoping before you open that door that they're OK. Worry comes with long-distance caregiving, and so does guilt, but you try really hard to make it work -- and you dread the day that won't be enough.

You are not alone. According to a recent poll, nearly one-third of all caregivers do not live with or, in many cases, even near their loved ones. Here's a look at a few challenges long-distance caregivers face, and tips to help manage care from afar.

Feeling emotionally connected to your family members.

Sometimes phone calls or visits filled with doctor appointments and home chores don't allow for heart-to-heart talks. As much as there is to cover, make the time to just sit for a few minutes and allow a natural conversation to emerge.

Set up a weekly phone-chat date for the times that you're apart. Have it at a time when you both can look forward to it and nothing competes. After you discuss some of your "to-do" list items, begin to share something personal about your own life. Ask their advice on something -- anything -- from the color shoes you should wear to your cousin's wedding to whether you should get a bigger car. Let them feel as if they're a part of your life as well.

Getting shut out.

Many long-distance caregivers, particularly those helping someone with moderate to severe dementia, find that their visits actually aggravate their loved ones -- who are confused and want to "go home" or don't understand why you keep calling them "Dad."

Remind yourself that you're not just there to visit. You're there to make sure Mom or Dad are being cared for properly. (Having a loved one with moderate to severe dementia increases the likelihood that he or she is living in a care facility.) Stay out of sight if you have to, but visit the staff, have lunch in the cafeteria, and walk the grounds. Talk to the people your loved one interacts with to find out how he or she is doing. It's painful not to be able to connect, but remember that you're still needed.

Knowing your loved one is safe and appropriately cared for.

Audrey Adelson, author of "Long-Distance Caregiving," writes, "Often, long-distance caregivers obtain important information from their elder or secondhand from family members who have spoken with a member of their loved one's treatment team. This makes it difficult to get a clear understanding of what is really going on." How do you stay in the loop when you're not in the area?

How to manage? By having lots of eyes. Whether you coordinate care for your loved one in his or her home or an assisted living facility, start to connect with those who interact with your loved one. Call after an appointment and ask how it went. Let them know you plan to be involved, and be sure to send a thank-you card or friendly e-mail.

Managing insurance and financial needs or making sure you can trust those who do.

Trust is a big issue for long-distance caregivers. When you don't have people who genuinely care for your loved one and communicate with you about what's going on, then you begin to worry, and worry, and worry.

Take the time to find professionals who can assist you and your loved one. It's worth the time and effort. Hire an elder law attorney to make sure their financial assets are protected, or check into local resources designed for seniors and their family's needs.

Make a plan for whatever comes next.

Long-distance caregivers dread getting "the call." Whether it's from a concerned neighbor or from the ER at 4 a.m., it's difficult to know what to plan for when anything could happen. Try to laugh (or scream, or sob) when all of your planning and hard work takes a dive and you have to come up with a new plan. Change is inevitable, and when we fight that it that causes us pain.

Play "what if." Come up with the three possible scenarios -- a fall, a worsening of a condition or ailment, or a refusal to move even when that's needed. How will you handle it? Can you go ahead and do some online searches? Can you connect with other caregivers and ask how they handled a big change and ask how it's going now? It's easier to face the "what ifs" when you know that somehow, some way, you will get through.

Being a long-distance caregiver comes with challenges you never thought you'd have to face. Sometimes you have to let go, just a little, of all that you can't control. Caregiving isn't easy, and there aren't always solutions, so grab your rearview mirror the next time you're in your car and look at yourself and say, "You're doing the best you can."

Carol O'Dell

Carol O'Dell is the author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir, about her experience caring for her mother through Alzheimer's, Parkinson's, and coronary diseases. See full bio

about 3 years ago, said...

Doesn't refer to my case. I live in a different country than mother. And where she lives the care is zero. She never wanted to come to live with me and she doesn't want now as well. I pay for her (I used my small lump sum pension and savings). Would be good if would be help for people in my case as well.

almost 4 years ago, said...

Bless Caregivers - you are so right. Good for you making the the difficult "right" decisions. I have been told that being a Caregiver can be like a single mom having Triplets that are 3 years old, with no support group. Except the "triplets" are actually one person, usually larger than ourselves. Memories and families are extremely important. You will not always be the "bad sister". You are the loving, caring sister you have always been.

almost 4 years ago, said...

I thought long and hard about long distance caregiving. My brother wanting to be alone 1000 miles away, in denial of his diagnosis then and now. I consulted with the best of the best, toured facilities (even though that wasn't an option he was interested in, alone and driving was). I Thank God for honest professionals discouraging ideas I was considering, not wanting to be the "bad sister." Experiencing AZ (or any illness) is not kind for the afflicted or their loved ones. Every ones' emotions and moods up and down. I have witnessed the importance of stimulation and structure provided by professional adult day programs, realize the importance of watching changes and his overall health, and most important, having an experienced healthcare team close by for him and us, concerned and caring for the family. I was told "You're in for a roller coaster ride." It has been, but I feel right decisions were made and are always open to change. I feel I've made things better, made a difference, my goal from this journey's beginning. Caregiving is not easy, I may always be the "bad sister," family and memories matter. The ride continues, seatbelt fastened. God Bless All Caregivers

almost 4 years ago, said...

Am 12 hours away. Dad never wanted to come back to where we live. It is hard. Especially with dementia, and no other family in area where he lives. Glad he seems happy with his care and tells me how good they are to him.

about 4 years ago, said...

I was a short-distance (165 miles one-way) for about 4 months. It was very difficult! I could not imaging being more than that distance away. Must be awful! I was so glad when we got them to move to a seniors independent living 15 minutes away from me.

about 4 years ago, said...

This is a great Article!