One of the first acts of self-care that I took on when I was caregiving was a monthly deep-tissue massage. My first session was a gift, but I declared them indispensable. Tonya, the massage therapist who untangled my knots and got me out of my head, had trained around the world and I found our conversations as relieving as the warm table and soothing music.
“Who cares for the caregiver?” she would ask sagely, talking to herself as much as me. She was an active grandmother herself, but would eventually move away to take care of her mom.
So that’s our topic today: what the people in our lives can do to make dementia
caregiving less stressful and lonely. For you caregivers reading, save the link and send it the next time someone says they want to help!
Just Show Up For Caregivers
Many dementia caregivers report feeling isolated (despite there being millions of us!) so the mist basic thing we might need from others is to just be recognized: our existence, our devotion, our efforts. That can look different for specific people, but our supporters can ask:
Do we want to be invited to things even if we probably won’t make it?
Do our hobbies still help us relax and de-stress?
Who are we outside of our care responsibilities?
Some caregivers may want to focus on the present (mutual friends, recent events) while others prefer the past (shared memories, personal histories) or even the future. Supporters should let our comfort be their guide.
Maintain Connections With The Person With Dementia
If someone had a connection with the person with dementia, it’s helpful to maintain that connection as another means of support for caregivers. A visitor or caller can improve the emotional needs of one or both care partners just by being present for a little while. Focus on what the person CAN remember rather than what they can’t. They needn’t worry about getting it perfect or making big/frequent gestures – they just need to meet you where you are and remind you that someone cares about you, too.
Define and Maintain a Specific Caregiver Support Role
One of the trickiest parts here is that care partnerships get lumped together and people
who only know one or the other person may pull away because they don’t know how to
interact with both. While it is wonderful to have versatile friends who can do both, we
can absolutely work with supporters if the boundaries are clear: “Jo is my friend and
they are here for me, not the person with dementia. They can run errands with/for me,
take/make calls at weird hours, and bring me gifts to show why I matter to them.” Or,
alternately, “Chris is [person with dementia]’s sibling and they are here for them, not me.
They can arrange visits so I can take a break, share stories and contextualize confusing
memories, and pass along information to extended family on my behalf.”
Both types of roles are important and necessary, and both can help within and outside the home.
Step In To Support Caregivers (or Don’t).
Whether someone is able to check on us every day or only once a year, they become a
lifeline to the lives we had before caregiving and the inevitable life that will follow. As such, they are uniquely empowered to let us know when we seem to be struggling. If we barely see everybody outside the home, then anybody can be an expert on reporting back to us the changes we demonstrate. Do we seem tired, anxious, depressed? Are we irritable, making unusual decisions, a little too eager for distractions? Even if we already know the answer, some outside perspective can help us recognize when it’s understandable and when it’s getting unhealthy.
Those who come around may be the only people who can let us know when we seem burned out, which is critical to avoiding major mistakes, deeper depression, and harmful escapism. In other words, we need friends who are empowered to intervene on our behalf: their perspective is vital.
Conversely, we may have friends who simply have too much going on and feel neither inclined nor qualified to support us through our time as caregivers. Since we can’t simply NOT be caregivers, the best thing may be to put the friendship on pause and ask that person to come back around for our next stage of life. It’s not as harsh as it sounds– after several years of caregiving, we caregivers may not have the mental capacity to stay in touch with more than a handful of people – but we will need patient friends with good boundaries to sit with us on the other side and help us find our way forward.
Discussion Topics for Supporting Caregivers
Here is a list of conversation topics that you or your support system may want to keep close by. The top row are topics and some activities that are likely to nourish caregivers with little pressure or need for decision-making. The bottom row are topics that should be handled more carefully since they are more likely to overwhelm. The column on the left demonstrates topics that are fairly universal, while the column on the right can vary more from person to person.
SAFE TOPICS:
| ENCOURAGE:
|
TOPICS TO AVOID:
| TREAD CAREFULLY:
|
So now we would like to hear from you. What topics help you feel seen and included, even when you cannot maintain the social life you had before caregiving? How have your
friends and family been able to keep your heart light? Let us know in the comments!
G.J. Hodson is a social researcher, community educator, and former dementia caregiver. After five years caring solo for a beloved grandfather, G.J. enrolled in graduate school to research isolation and inequality for caregivers, graduating into a pandemic with a Master's in Sociology and a certificate in Multicultural Women's and Gender Studies.
In 2017, G.J. became the first former participant of Caregivers of Dementia
Wellness Retreats to become a volunteer. In addition to creating and hosting
educational programs, G.J. facilitates several support groups for dementia caregivers and occasionally freelances as a care coach. You can read their previous blog entries: An Internet Guide for Dementia Care Partners and 5 Key Lessons from A Dementia Caregiver.
In 2021, G.J. proudly joined the board of the Coalition for Aging LGBT, a Dallas
non-profit that coordinates resources and information for older LGBT adults, and there
helped launch Silver Linings: a virtual support group for caregivers in the community.
G.J. also works with researchers at the University of Illinois - Chicago and the University
of North Texas on an National Science Foundation-funded study into the experiences of
adults who identify outside the gender binary.
Learn more about G.J's service, scholarship, and upcoming appearances.