When a parent is diagnosed with Alzheimer’s or another type of dementia and the other parent begins their caregiving journey, the dynamic between the caregiving parent and child shifts dramatically. Through our experiences and conversations with families navigating this transition, we’ve developed six helpful tips to help you support your parent as they take on the role of primary caregiver.
Understanding the Shifting Dynamic
Parents often begin their caregiving journey wanting to protect their children from burden, just as they’ve done throughout their lives. Their intentions are good. They may feel they ‘should’ handle everything independently, not wanting to appear incapable or impose on their children’s busy lives. This mindset, while coming from a place of love, can create barriers to effective support.
Here are six tips to help you shift this narrative and support your parent(s) through their caregiving journey.
Tip 1: Insert Yourself into the Journey
The first step is making your presence and support known while respecting your parent’s role as primary caregiver.
Key points:
- Increase visit frequency or phone calls
- Position yourself to observe daily dynamics
- Avoid judgment of decisions
- Listen more than advise
- Show support without taking over
Andrew’s Experience:
My sister reminded me that I didn’t live there. It was a very powerful thing to say — a very accurate thing to say. I was a couple of hundred miles away and wanted to offer help, but I had to remember not to try and take over or challenge decisions when visiting. Instead, I needed to be there and support them all.
Tip 2: Monitor Caregiver Health
Ensuring your caregiving parent maintains their own health is crucial for sustainable care.
Key points:
- Ask specific questions that can’t be answered with “I’m fine”
- Monitor medical appointments
- Discuss challenges they’re facing
- Watch for signs of stress or exhaustion
- Encourage preventive health care
Tip 3: Provide Emotional Support
Help your parent maintain connections and avoid isolation while caregiving.
Key points:
- Listen actively to what’s said and unsaid
- Validate feelings before offering solutions
- Maintain normal conversations beyond caregiving
- Encourage outside activities and interests
- Help research support resources
Nancy’s Experience:
I was full of tips about how to handle situations, but I wasn’t spending time focused on how my mother-in-law was feeling. I learned to say things like, “Wow, that was really scary when he came out in his bathrobe and you realized he doesn’t understand how to get dressed anymore. How did that make you feel?” This changed our whole dynamic and improved my ability to support her.
Tip 4: Share the Load
Even from a distance, there are many ways to help manage caregiving responsibilities.
Key points:
- Handle digital tasks remotely
- Coordinate with local friends and family
- Create support networks
- Help with scheduling and planning
Accept and coordinate offered help
Sue’s Experience:
When caregiving begins, we often don’t know what we don’t know — even the right questions to ask. For those of us supporting our parents from a distance, there are practical things we can do to make their journey smoother.
Curate Resources: Research and gather helpful tools, support groups, and information to provide answers to questions they might not even know to ask. Having these resources ready gives them solutions when they need them.
Foster Connections: Caregivers’ worlds can feel smaller as they become isolated. Encourage family members to stay connected. A quick call, voicemail, encouraging text, or brief conversation can help them feel supported and less alone.
By simplifying their responsibilities and nurturing our relationships, we make a meaningful difference in their caregiving journey.
Tip 5: Participate in Care Details
Get involved in both practical and legal aspects of care management.
Key points:
- Obtain necessary legal documents early
- Secure medical power of attorney
- Address privacy laws and documentation
- Arrange financial access if needed
- Support decision-making processes
Tip 6: Support Through Grief
Grief occurs throughout the journey, not just at its end.
Key points:
- Acknowledge “drip grief” throughout the journey
- Help maintain connections during caregiving
- Support through the final transition
- Assist with post-care legal matters
- Be sure to process your own grief
Andrew’s Experience:
Be intentional about your grief. Sometimes we can think our whole focus should be on the person who lost their partner of 40–50 years, and we don’t give ourselves the chance to grieve. It took me quite a while to get through that. Give yourself permission to recognize that you’re grieving too.
Sue’s Experience:
I’ve been on many caregiving journeys. I’ve learned I’m grieving little things throughout our journey. I call this ‘drip grief’. It’s not a gushing firehose, it’s like a continuous drip. Each drip is small and yet they can build up over time. I honor each one, so I can move forward.
Special Considerations
When creating support systems:
- Develop emergency plans early
- Create shared care plans
- Document important information
- Keep contact lists updated
- Maintain flexibility in arrangements
About Our Guest Expert
This episode featured Andrew Phipps from Empathy Unbound, who shared his personal experience supporting his father as he cared for Andrew’s mother with dementia. Andrew created Empathy Unbound to promote the idea that empathy is one of our greatest superpowers — one that we often don’t recognize or use enough.
As Andrew explains, “The ability to take on the experience or position of another to help understand them is invaluable. Putting ourselves in someone else’s shoes helps us understand their situation in a way we couldn’t otherwise.” You can find the Empathy Unbound podcast wherever you get your podcasts.
Final Thoughts
Supporting a parent who becomes a caregiver requires understanding, patience, and proactive involvement. While the parent-child dynamic may shift, your support can help create a more sustainable caregiving journey for everyone involved.
Key takeaways:
- Be present without taking over
- Monitor both parents’ health
- Provide practical and emotional support
- Plan ahead for emergencies
- Support through transitions
- Prioritize self-care
- Honor grief throughout the journey
If you have tips about supporting a parent who’s becoming a primary caregiver, please share them on our Facebook page or Instagram page.
We’re all on this journey together.
