Long Distance Caregiving

By Wendy Johnstone
June 14, 2016

As we approach Father’s Day, I can’t help but think of Dad and my two brothers, who are such exceptional fathers.

 
I’ll be away in France and I’m planning ahead with Carly to make sure her dad feels appreciated for the positive role he plays in her life. The love she has for him knows no boundaries and reminds me of how I adored Dad (with the exception of a decade from 12 to 22!) and in his own ways, how he adored and loved me and was so proud of me (and all of his kids!)

 
Dad had a huge impact on my life in many positive ways. We also clashed on many levels which taught me equally about the power of forgiveness. Perhaps though his greatest gift was the circumstances leading up to his death, which acted as a catalyst and motivation for me to start my eldercare and geriatric case management business.
Many of you know I am passionate about the field of Gerontology and finding ways to change our perspective of aging and the importance of family caregiving. Central to an aging senior’s life is planning ahead with all those who will be supporting and providing care. It’s not just about having a will, representation agreement and power of attorney. Rather, it’s how aging family members want to spend their next 12 months or 25 years and what and who they need to support those decisions and wishes.

 
When I think of Dad, I also think about what it was like to be a long distance daughter when his brain tumour returned followed by the strokes he sustained over the last 10 years of his life.
My blog this week is about long distance caregiving. Before we get there:

 

To all the Dads out there, happiest of Father’s Day to you all…especially to my two brothers, Chuck and Andy.

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Miss you Daddy-o.

It’s 5:30 pm on a Monday and I’m interrupted from a Board Meeting by a colleague. She says, “It’s your brother from Toronto calling.”
The conversation is choppy. It’s Dad. He’s had a massive stroke. Don’t fly home. He was a candidate for surgery and is recovering in hospital. He should be fine.

My brother repeats, “Don’t fly home… yet. I’ll call you tomorrow with an update.”

As a long distance daughter concerned about my father’s care, I was at a unique disadvantage. I felt helpless, “out of the loop” and was struggling to understand the full extent of my father’s circumstances. Telephone tag with health professionals, confidentiality obstacles and unfamiliarity with available resources in the community I grew up, I found being a caregiver incredibly challenging and frustrating from afar.

For long distance caregivers, getting a true sense of how well the person they are caring is doing can be hard to judge over the phone. Many elderly parents forget what the doctor told them or they choose not to discuss it with their adult children. Other times, stories of near accident or fall is casually made or as a passing comment. Knowing how to react or if to react is one of the toughest areas of caregiving and distance can make it trickier. Long distance caregiving is quite the ride – guilt for not doing enough or for not being there, sadness in accepting an aging family member’s decline, anxiety and stress of frequent and unpredictable travel and fear of the unknown.

Talk First, Act Later: Before jumping in and getting too involved with researching what help is available, start with an evaluation of their aging loved one’s situation. Collect information, be it during a visit or over the phone. Find out what’s been done by in town family, friends and community health professionals. Talk about future care and housing options. Learn everything you can about your loved one’s disease or disability. This becomes the backbone of your care plan.

Build a Team that Works: Find out who is in regular contact with the person being cared for and ask them to be part of the Care Team. Your team will include other family members and sibling, neighbours, close friends, community care providers, to name a few. Be clear in advance on what type of care and help is needed and assign everyone tasks best suited to their skills, availability and wiliness.

Get to Know the Locals: Build in time to research what programs and supports are available in the community. Ask your local Care Team members to make inquiries, collect brochures and visit seniors’ centres, etc. Find a copy of the local phone directory and keep track of the who, what, when and whys related to community resources and services. Patience and persistence are a must to navigate a health care system from afar!

Keep Everyone In the Loop: Long distance caregivers often feel left out of decisions or get information second hand. Finding a way to stay current and connected can help prevent family feuds and allow everyone to know and understand the options. Designate one person as a primary contact person. A case manager or eldercare planner can also serve as the caregiver’s point person. Use an online calendar and task system such as Google Calendar that your Care Team can access and receive updates.

Know Your Limits, Care Within It: It’s easy to get absorbed in your aging loved one’s care. Don’t forget about your own life plan. The old adage is still true, “You can’t care for someone else if you can’t care for yourself.”

Below you can also check out my latest video on “Long Distance Caregiving” on YouTube. Check back there regularly for a series of videos on caregiving resources and tools.

 

Wendy Johnstone is a gerontologist (MA, Gerontology) and helps seniors and their families through the many transitions associated with the aging process. She can be reached at 250.650.2359 or online at http://keystoneeldercare.com.

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“You are amazing! What I tried to do in 2 months, you did in 1 week. You’ve helped us navigate the system, made sense of Mom’s disease, and gave back her independence and control. Thank you for making such a difference in Mom’s life and giving us, her family, complete peace of mind.”

– Mike G., Nanaimo, BC

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