I just became a long-distance caregiver. Now what?
If you live an hour or more away from a loved one who needs your care, you’re a long-distance caregiver.
Based upon the needs of the care receiver, as well as the skills, abilities and limitations of the caregiver, every long-distance caregiving experience is different.
I’ve been a long-distance caregiver on two occasions, each with its own set of responsibilities.
In the first instance, my mother and sister were the hands-on caregivers for my father, and since I was 3,000 miles away, I took on the role of long-distance caregiver.
Based upon family conversations and decisions, my responsibilities included much of the advance care planning that was going to be needed as my father’s Parkinson’s progressed.
I studied the disease. I researched and hired a geriatric care manager/life care manager to advise us on how my father could attain his maximum functional potential as his disease progressed. I researched and hired, with my mother’s approval, a certified financial planner to manage my parents’ financial assets. I did the same with an attorney.
I provided a safe place for my mother to share her feelings, and I offered her emotional support on our daily phone calls. I also flew back East periodically to give my mother and sister needed respite.
These were the duties I was able to provide from across the country.
I asked my friend Katie Wiltfong, a social worker employed by a hospice agency and a law firm, what one piece of advice she would give to a long-distance caregiver in this type of situation.
The No. 1 thing she suggested is for the long-distance caregiver to appreciate the work the hands-on caregiver is doing. She said a large amount of family conflict arises when the long-distance caregiver tries to second-guess the person providing hands-on care.
My other long-distance caregiving experience was for my husband’s parents. My father-in-aw had dementia and my mother-in-law was physically frail. As my husband and I had been named his parents’ power of attorney, we took on the lead role in their care.
After a visit, we were able to understand the extent of the help they needed. I began to research residential care facilities for my father-in-law. We received permission from my mother-in-law, who still had capacity, to have access to their healthcare information. We received the same access to their bank and utilities.
Once the couple had exhausted their personal savings on care, I began the process of understanding and applying for Medicaid and veterans benefits. I contacted their local county Area Agency on Aging to receive help with the process and the local resources available.
Over time, as my father-in-law’s abilities waned, we placed him in a residential care facility. The coordination of his care became easier, as I now had one point of contact for his medical and social needs.
My mother-in-law, on the other hand, needed more help at that time. She did not drive and was in some ways a danger to herself. She lived in a duplex but resisted in-home care, so we were creative.
We found her a housemate who would help care for her in exchange for rent. She became our key point of contact, and the hands-on caregiver, until my mother-in-law moved into a residential care facility after her husband passed away.
If you are new to long-distance caregiving, here are some ways to get started.
Determine if there is a primary caregiver. Ask the care receiver how you can be most helpful.
Go to n4a.org and call the county Area Agency on Aging to see what resources are available.
Obtain permission for access to healthcare, insurance and financial information if applicable.
Develop a good understanding of the person’s health issues and their needs.
Find a local coordinator like a geriatric or life care manager by going to aginglifecare.org.
Make the most of your visits by meeting service providers, reassessing the needs of the person you care for and taking the time to connect with your loved one.
It’s important to note that we are not taught caregiving skills, and some of this may be very new to you. Be patient with yourself and use the internet to your advantage. The Family Caregiver Alliance has a Handbook for Long- Distance Caregivers that is quite helpful (caregiver.org/handbook-long-distance-caregivers).