Caring for a loved one with Alzheimer’s disease or another form of dementia is a complicated journey filled with physical, mental, and emotional challenges.
When family members assume the role of caregiving, they often do so out of love, not understanding the commitment or how much caregiving will affect their lives and relationships with other family members.
According to the U.S. Centers for Disease Control and Prevention, caregivers of people with Alzheimer’s and related dementias are at greater risk for anxiety, depression, and a poorer quality of life than other caregivers. And when it comes to siblings, an imbalance in caregiving can lead to deep resentment and conflict.
Where Were You When I Needed Help?
This is a common question posed among siblings when one is the primary caregiver for a loved one with dementia. When bathing, managing medications, scheduling and attending doctors’ appointments, handling bills, and staying up all night due to wandering falls on one sibling. While the other sibling continues with their everyday life and offers vague promises of support, such as “Let me know if you need anything,” This can lead to resentment.
This imbalance in care doesn’t always come from malice. Sometimes it comes from fear, guilt, denial, or distance, but the result and impact on the relationship are the same. One sibling quietly drowns in responsibility and resentment, while the other believes they are doing enough.
Although out-of-touch siblings may be emotionally supportive, it's not the same as actively participating in the daily struggle of caregiving. Primary caregivers have to initiate the necessary conversations with other family members so they and their loved one can receive the care and support they both deserve.
Initiate Necessary Conversations
Siblings with a loved one with dementia have to have uncomfortable conversations to find appropriate resolutions. It's important to recognize that successful caregiving is a team effort.
Primary caregivers need more than vague offers of support. Help has to be defined, requested, and acknowledged.
If you’re a primary caregiver, here’s how to get the help you need:
- Initiate the conversation: Let your sibling know you need to discuss sharing responsibilities. Explain that you can’t continue to do everything alone and you need their help.
- Be specific: Write down 5-10 tasks you need help with. When you define help, you make it actionable and take away the excuse that they didn’t know what you needed.
- Can you handle medication refills?
- Can you take the weekend shift every other month so I can travel or rest?
- Can you schedule and attend the next neurologist appointment?
- Can you contribute financially to the adult day care program?
- Ask without guilt: Admitting and asking for help is not a weakness. It’s wisdom. Caring for someone with dementia is too difficult to handle alone. You don’t and shouldn’t have to do everything.
- Acknowledge difficult emotions: Sometimes the issue isn’t just logistics, it’s pain. Siblings often see the same parent through different lenses. One sibling may be in denial about their parent’s diagnosis, and it may be easier to check out than to step in. Be honest about your feelings. If you feel angry and alone, acknowledge your feelings and let your sibling know you want to improve your relationship.
Wrap-up
Caring for a loved one with dementia should not cost you your family or your life. But unfortunately, the demands of caregiving may create silence, resentment, and isolation between siblings.
Caregivers have the right to ask for help, share the burden, and teach others what true support looks like. Your siblings aren’t mind readers. They may not recognize what you need unless you tell them.
Start the conversation. It may not go perfectly, but it will go somewhere and somewhere is better than being alone in the caregiving journey or losing important relationships.
If you’re feeling overwhelmed, take a moment to write down and communicate what you need, whether it's errands, grocery shopping, or time to relax and regroup.
Walking the dementia journey is never easy. But with honest and constructive conversations and shared responsibilities, siblings can walk the journey together.
To learn more, listen to the “Family Conflicts Series Episode 7: When One Sibling Carries All the Weight” episode of The Disappearing Mind, an award-winning podcast hosted by National Dementia Coach Dawn Platt that helps listeners navigate along their personal journey with dementia through exclusive and direct perspectives of people diagnosed with the disease, their caregivers and experts in the field.