For many years I had the privilege of facilitating a family support group for individuals caring for a loved one with dementia. Because the group was sponsored by a local community hospital, group members were loyal and very involved, year after year.
Over the course of several years, we welcomed individuals into the group with a newly diagnosed loved one who needed only a little emotional support and were generally looking for information about the disease, progression and care options for the future.
One by one, these caregivers began to face the need for help. Getting help at home was step one for nearly all; some continued with home care right through the end of their loved ones’ lives.
Others chose to look at care communities when the needs became too high for them to manage at home.
Ultimately, one by one, loved ones passed on. We continued to gather to support those still in the journey and to talk about life after the all-consuming role of family caregiver vanished. Many experienced feelings of being adrift without a purpose or focus; others emerged to a life newly unencumbered by the worries of another person’s care.
During this month honoring individuals, such as these I think back to the many conversations we had about finding care solutions; conversations that went like this:
“We finally found a caregiver my mother loves. She is my mom’s best friend, and we’re so lucky to have her!”
“The home care agency we chose simply doesn’t communicate with us. We call and leave a message and rarely get a call back. It doesn’t feel like we’re very important to them.”
“We absolutely love the facility we found for my husband. He’s happy there, and doesn’t really want to come back home, even for family events. The staff are kind, caring and welcoming to me. It is wonderful.”
“I’m thinking of suing the facility my husband is at. They didn’t follow the medication orders and my husband has ended up back in the hospital twice in the past month. It’s been a nightmare of all of us – the facility included.”
As you can imagine, feelings surrounding placement or getting care support were often guilt-filled. If one family member could do all the care, and some did, should another feel guilty and irresponsible for “abandoning” their loved one to other people’s care?
Those that had found support in caregiving that honored them were vocal champions for the care community or agency. They wanted everyone to know about the individual, the agency or the care community that had changed their caregiving life so much for the better.
They became eager information and referral sources for everyone else in the group, and frankly, anyone who would listen.
If you’re in the business of providing care, do you know what the families of your clients say about you? Are they out in the communities telling their coworkers, neighbors, church friends and support group cohorts about the wonderful care they receive through your business?
During the month honoring family caregivers, take an extra minute to listen to your family members. Thank them for entrusting you with their loved ones’ care. Offer them something to help make their journey easier, whether its information and training (see IPCed Family Learning Center for a turn-key solution) or a holiday party just for families, it’s a great way to offer your support and to enlist them as part of your outside referral team.
Their voices will be much more effective than those of a hired sales person. Make sure their voices get heard, loudly and clearly.