Long Distance Caregiving – A Personal Story

Part of my job at SelectCare involves meeting with prospective clients during our free initial home health assessments. While our RN Field Nurse Supervisors focus evaluating a client’s medical, social and safety needs, I get to know the client and their family, what they hope to gain from our services and discuss these details with our Service Coordinators to ensure a truly personalized home care experience.

In the course of my work, I oftentimes hear the concerns of family who are long distance caregivers living outside New York City who know their loved ones need assistance in their home, but are unsure how to gently approach the topic.Family Photo_Long Distance Caregiving

Because these conversations are so common in my day-to-day work, I was surprised to experience having the very same sensitive conversation with my grandmother during a recent visit to the home she shares with my grandfather in Southern California.

My grandmother, Alice, spent her career as a Registered Nurse. Thanks to her decades of experience, she has been an incredible caregiver for my grandfather, Peter, who after more than 90 years of hard work, has begun to experience a decline in health.

The work my grandmother has performed keeping Peter physically and socially active, while tending to the symptoms of both their chronic conditions, is a testament to the love they have for one another. Despite her dedication to caring for Peter, I’ve begun to notice a new strain in her voice when we talk about her daily routine by phone.

Oftentimes, our conversations drift from casual chats to her efforts to keep Peter comfortable and his symptoms in check. In recent years, her personal activities like playing with the neighborhood bocce club and community gardening have fallen by the wayside as their medical appointments have increased. Activities like organizing and managing Peter’s expanding list of medications and assisting with his personal care have begun to take up more and more of her time.

My grandparents have always been very independent people, and it was only after my grandmother broke her ankle that she became receptive to the idea of bringing formal home health aide services to help into her home.

Thanks to the encouragement of my mother and her sisters, Alice has been able to arrange two short, weekly visits from a local home care service to provide some assistance for my grandparents in their home. These services have been a lifesaver, since they allow my grandmother two mornings a week where she can rest, but as Peter’s needs grow, the family has shared concern that Alice could benefit from a bit more help to get her through the week.

My greatest fear is when I become sick, who is going to care for me like I take care of your grandfather?

I voiced these concerns to my grandmother as we were returning from running some errands and I was somewhat surprised at how quick she was to shoot down the suggestion.

My grandfather dislikes relying on people outside the family for help and is very guarded about having caregivers in his home, my grandmother said. Finding male home health aides had been a challenge, and she felt that Pete would not accept a stranger and that no one could provide Peter the same level of care that she does.

“Grandma, I understand,” I said. “But if you run yourself into the ground caring for Peter in the short term, what are you going to do if you become too weak to keep going?”

By this point, our conversation had become somewhat heated, but my grandmother stopped the car as we approached her home, looked at me and said, “my greatest fear is when I become sick, who is going to care for me like I take care of your grandfather?”

This is an all-too-common fear for older family caregivers and one that I know home health care can play a huge role in alleviating, but just getting to that point in a conversation like this can be a huge challenge for a child or grandchild of someone in need.

In light of how difficult conversations like these can become, I wanted to share with my fellow long distance caregivers a few of the “lessons learned” that I’ve found can make broaching this subject just a little less daunting.

ListenAll home health care options should work towards protecting the client’s health and preserving their independence and dignity. That begins with the first conversation you have on the subject and should guide every action taken. Listen to your loved one’s concerns about home health care and identify what they perceive as the biggest hurdles in their life.  Work together to find solutions agreeable to you and your loved one.

Be open to alternate ideas There is no single “correct” solution to addressing a health or safety concern in the home. A “good” solution that your loved one has shown a preference for will be infinitely more helpful than a “great” solution they resent or will not pursue on their own. Case in point – rather than buying a chair lift or relying on a wheelchair to help manage my grandfather’s mobility problems, my grandmother bought a used golf cart to shuttle around their community and bypass the stairs leading to their single-story home. It’s an unorthodox approach, but my grandparents love the solution and have greatly improved their quality of life with this tweak.

If it’s not broken, don’t fix it We all have our own routines and your loved ones are no different. Rather than trying to upend the day-to-day routines your loved one enjoys, try to learn the motivations for why they do what they do and provide solutions or assistance that will wrap around these approaches. The result will be an easier transition and the agreed upon solution will better reflect and respect your loved one’s independence.

Be informed, communicate It’s critical that a long distance care giver and your loved one keep all lines of communication open. Some questions are difficult to ask and give honest answers. By staying in close communication, or using a third party to gather regular updates – like the free monthly nursing supervisory home visits provided by SelectCare – you can spot and mitigate problems before they spiral out of control.

Ask QuestionsYour loved one may want to downplay their own legitimate health and safety concerns for fear of souring an otherwise happy visit. Rather than putting off these hard conversations until your loved one’s home situation has deteriorated, voice your concerns in a careful, well-thought out manner. Remember that a small problem faced today can grow considerably worse if you choose to ignore it.

As I said, this was not an easy conversation, especially after a long day of chores, but I am so glad that we each voiced our concerns and talked about what we could do to better address these issues. My grandmother plans to maintain the two weekly visits to provide her with time to breathe, but we now understand where we stand and can use that understanding as a foundation for future talks that will help preserve Alice and Peter’s health, safety and independence.

I hope this post provides you with some thoughtful ways to begin this conversation with your own loved ones. SelectCare’s home health care experts are always available to talk about your concerns and provide you with the information you need to ensure your loved ones can remain in their homes in good health and happiness.

Pat Tarantino, SelectCare Community Liaison

Photo-  Back Row:  Alice, Carla, Pat Sr., Pat & Kyle | Front Row: Yasmin, Grandfather Peter & Cody