When Caregiving Feels Heavy: Finding Support, Energy, and Moments of Joy
There’s a quiet kind of exhaustion that many caregivers carry.
Not just physical fatigue, but emotional fatigue. The kind that comes from constantly adapting, anticipating needs, managing uncertainty, grieving changes, and trying to hold onto connection in the middle of it all.
At a recent Project Present caregiver support session, one theme kept surfacing: energy.
Caregivers shared concerns about loved ones living with dementia experiencing lower stamina, increased daytime sleeping, less motivation, and changes in engagement. These shifts can feel confusing, frustrating, and heartbreaking, especially when they alter routines, relationships, and expectations.
But alongside those conversations, something else emerged too:
Support. Validation. Humor. Relief. Understanding.
Because while caregiving can feel isolating, no one should have to navigate it alone.
Understanding Changes in Energy and Stamina
It’s very common for individuals living with dementia to experience changes in energy and stamina. These shifts may be connected to changes in the brain, disrupted sleep patterns, depression, medication side effects, or apathy.
For caregivers, it can be difficult to know what’s “normal,” what requires medical attention, and how to respond compassionately without feeling depleted themselves.
One concept we discussed in our support group was playing detective, looking at the full picture rather than reacting only to the behavior in the moment.
Questions like:
Is my loved one overstimulated or under-stimulated?
Have they eaten enough today?
Are they getting quality sleep?
Could pain, medication, fear, or confusion be contributing?
Sometimes the behavior we see is communication in disguise.
We also encouraged caregivers to explore the work of Teepa Snow, whose practical tools and compassionate approach have helped countless families better understand dementia and caregiving dynamics.
Her website, Positive Approach to Care by Teepa Snow, offers videos, caregiving strategies, and educational resources. One particularly helpful short video walks caregivers through six areas to consider when encountering distress or resistance from a loved one living with dementia:
Teepa Snow: Understanding the Puzzle Pieces of Dementia Care
Strategies to Support Energy and Engagement
During our discussion, we also shared several strategies recommended by Alzheimer's Society to help support energy, engagement, and overall well-being for individuals living with dementia.
These included:
Maintaining a consistent daily routine
Planning active days with enjoyable activities and hobbies
Encouraging regular movement and exercise
Celebrating small successes
Finding ways for loved ones to contribute to family life
Offering reassurance, love, and respect
Avoiding stimulants and heavy evening meals
Supporting proper nutrition through approaches like the Mediterranean diet
Addressing possible depression with appropriate medical support
Connecting with support groups that foster encouragement and motivation
What’s striking about many of these suggestions is how simple they sound, and yet how powerful they can be when practiced consistently and compassionately.
For additional information and support related to dementia and fatigue, caregivers may find these resources from the Alzheimer's Society helpful:
Alzheimer’s Society: Apathy and Loss of Motivation
Alzheimer’s Society: Sleep Problems and Dementia
The Grief We Don’t Always Talk About
Another important topic that surfaced during our session was ambiguous loss, the grief that comes when someone is physically present, but emotionally or cognitively changed.
This type of grief can feel especially painful because there’s no clear resolution. Caregivers are often grieving:
the relationship they once had,
the future they imagined,
the roles that have shifted,
and the gradual changes unfolding over time.
And yet, many caregivers don’t feel permission to name that grief out loud.
At Project Present, we believe it’s important to acknowledge that these feelings are real, valid, and deeply human.
Grief and love often coexist in caregiving.
Over the years, caregivers in our community have repeatedly recommended two books that help put language to this experience:
Good Grief by Granger E. Westberg
Ambiguous Loss: Learning to Live with Unresolved Grief by Pauline Boss
Caregivers interested in learning more about ambiguous loss may also appreciate the work of Pauline Boss:
Pauline Boss Resources on Ambiguous Loss
These resources remind caregivers that grief in dementia caregiving is real, even when the person you love is still physically here.
Something Else We Don’t Always Talk About
Caregiving also involves navigating deeply personal and sometimes uncomfortable challenges, including toileting, incontinence, and changes in bathroom habits.
These experiences can feel overwhelming, emotionally charged, and isolating for both caregivers and the person living with dementia. Many caregivers carry shame or frustration around these moments, even though they are incredibly common.
At our support session, we talked about the importance of approaching these situations with patience, dignity, and compassion, both for our loved ones and for ourselves.
We also shared a helpful resource from the Caregiver Action Network that offers practical guidance for navigating toileting-related caregiving challenges:
Caregiver Action Network: Tips for Caregivers, Toileting Challenges
Sometimes, simply knowing that other caregivers face the same realities can lessen the loneliness they feel.
Caregiver Self-Care Isn’t Selfish
We also spent time talking about caregiver self-care, not as a luxury, but as a necessity.
Sometimes self-care looks like:
a breathing exercise,
a walk outside,
a support group,
prayer or spiritual connection,
reading for pleasure,
calling a friend,
asking for help,
saying yes when help is offered,
spending time in nature,
exercising,
eating nutritious foods,
learning something new,
or simply treating yourself with the same compassion you would offer someone else.
One caregiver in our recent four-week intervention shared:
“It gave me more confidence… I can now de-stress myself in a short time.”
That’s the kind of impact we hope to create, not perfection, but moments of relief, resilience, and reconnection.
For caregivers interested in exploring mindfulness and stress reduction practices, these resources may be helpful:
UCLA Mindful Awareness Research Center Guided Meditations
Family Caregiver Alliance Self-Care Resources
Yes, Even Laughter Helps
At Project Present, we often say that laughter is not frivolous; it’s functional.
Humor can interrupt stress cycles, create connection, soften difficult moments, and remind us of our humanity. Even a small smile or shared joke can shift the energy in a room.
At the end of each support session, Ann Marie shares a few jokes to send everyone off with a smile. In this session, she included:
“I’m trying to organize a hide and seek tournament, but good players are really hard to find.”
“I’m reading a really good book about anti-gravity. It’s impossible to put down.”
Silly? Absolutely.
Helpful? Also yes.
Sometimes caregiving spaces need room for both tears and laughter.
Community Matters
Whether through support groups, our four-week caregiver intervention, or programs like Laugh Lab, our goal at Project Present is to create spaces where caregivers feel:
supported,
understood,
equipped,
and a little less alone.
Caregiving is hard. But connection can make it lighter.
If you’re navigating this journey, we hope you remember:
You do not have to carry it all by yourself.
