When my mom developed dementia, she was no longer able to live independently in the same way she had for the five years since my dad had passed away. I was faced with the option of moving her into assisted living somewhere in San Francisco, so I could visit her often, or rearranging my life so I could take care of her myself, in one of our homes. I knew that she would prefer to stay within the walls that held so many memories of my dad so, even though I felt clueless about how to manage all of her needs along with my own, I chose to make the move back to my old childhood neighborhood so I could once again live with my mom. It was hard for me; I’ve always turned to my mom for strength and perspective. And now, she needed mine. I don’t remember which friend wrote down for me the time and place of a caregiver support group meeting right on the Bay, but I do remember that it set both my mom and me up for an incredible heroines’ journey of trials, discoveries, and celebrations. This group, and many other local ones like it, confront the two big issues I was facing. How can I take care of myself and adjust to the physical, mental, and emotional necessities of caregiving? And, how do I go about providing my mom with love and presence while also managing all of her practical needs, from paying her bills to helping her stay engaged in life in the face of these new challenges to her memory and perspective?
Powered by Caregivers for CaregiversMade up of caregiver peers going through their own similar experiences, support groups break down the barrier of isolation that often comes with this calling. Mental health professionals familiar with the caregiving field facilitate many groups, but without other participants just like you and me, they would have no purpose; these groups wouldn’t exist. They’re safe, supportive places for you to go and to listen, to be vulnerable and to share. There’s a sense of equality and acceptance; everyone has come to give and to take, a line that blurs as you are able to develop a healthy, balanced relationship with all aspects of your identity, including the newly formed caregiver role. A few years ago, my mom passed away, but it was only the beginning of my work caring for older adults aging in place in the San Francisco area. I learned so much from my mom’s experiences, and her late-in-life courage gave me so many ideas about how to approach caregiving in a creative way. I kept a journal while living with my mom. It was for my observations of her experiences, from what activities brought her the most joy to which medications brought on terrible side effects—and everything in between. I would bring this journal with me to my support meetings so I could share my ideas and inspirations. I recommended that one man find opportunities for his dad to help teach the violin, even though he was no longer able to play his own because my mom so enjoyed teaching me how to sing, even though she couldn’t remember the words to her favorite songs from one day to the next. My friends and peers in these support groups helped me keep things in perspective and stay positive as my mom’s memory continued to decline. I still frequently attend caregiver support groups, but now it’s also important to me that I give back—that I be a lifesaving voice to a worried caregiver feeling in over his or her head.
There for You When You’re ReadyI should mention that when my friend first handed me the meeting details, I hesitated. Truthfully, I wasn’t yet ready to accept this new caregiver role, the changes it would mean for my life, or the changes I was seeing my mom go through. I’m glad I pushed through the hesitation, though, because that group ended up supporting me through that most difficult of internal processes—acceptance. My hesitation nearly became a barrier to the help I really needed, which would have been a recipe for caregiver burnout and a potential missed opportunity to give my mom the very best in enlightened, compassionate care. Perhaps you’ve passed on a chance to visit a support group for caregivers because:
- You’re not comfortable sharing in groups. Give yourself permission to just listen the first time you attend. On one hand, you’re offering support to other caregivers in need of a welcoming ear. On the other hand, you never know what inspired ideas, motivation, or relief you might find here for yourself.
- You feel ashamed by the idea that you can’t handle this on your own. Just remember that everyone in the group is there to lean on the community in one way or another. These groups aren’t just for the people who can’t do it alone; these groups exist as doorways to saner, more balanced, more compassionate care experiences. In fact, it may introduce you to the many local resources available to caregivers in San Francisco that can enrich your life—and that of your aging loved one—beyond your expectations.
- You’re doing okay without support. Remember that this journey tends to flow in cycles: you’ll likely come back around to challenging times sooner or later. It can be empowering to visit these groups when you’re feeling positive so that you can build up resilience and strength, rather than trying to bounce back from a compromised place in the future. Groups can help set you up for heightened, continued success.
- You can’t step away from your caregiving responsibilities. You’re definitely not alone in feeling the pressure of this barrier. Institute on Aging is just one of the many organizations that offers respite care resources, allowing your aging loved one to take part in their own supportive activities or enjoy in-home care with another caregiver while you take a break. Even if respite care isn’t an option for you, don’t let this obstacle keep you from getting support altogether. Online groups offer similar opportunities for listening and sharing. Link2care, for example, is a forum where you can talk to local caregivers dealing with challenges specific to San Francisco living, like the incredibly high cost of living and the limitations in public transportation.