Question from Alzheimer’s Care Partner Community: Looking for ways to support the primary caregiver (my dad) as he tries to support the patient (my mom) and neither of them want help from outsiders!

This is an incredibly common question that MANY of us struggle with repeatedly, so you are in good company! Here are some steps you can take to support your parents in this situation:

Open Communication: Start by having an open and honest conversation with both of your parents. Finding a time when things are calm and not heated is also key to engagement. Express your concerns and let them know that you want to help ease the burden and provide support. Encourage them to share their feelings and concerns with you.
Educate Yourself: This is an incredibly important step. One of the common complaints that primary care partners have is that other family members “just don’t understand” the disease. The more you can educate yourself, the more credible you’ll be with your primary care partner. Learn as much as you can about Alzheimer's disease or another form of dementia and its progression. Understanding the condition can help you empathize with your parents and provide informed assistance.
Offer Respite: Even if your parents are resistant to outside help, offer to give them short breaks. You can spend time with your mom, allowing your dad to rest or take care of other responsibilities. Having specific ideas and suggestions here is critical. Asking your parent “how can I help” puts the burden of decision making on them, which can be overwhelming. Suggesting a regular date, time, and activity (weekly, monthly or whatever cadence works for you) gives both your parents something to look forward to.
Help with Specific Tasks: Identify specific tasks that you can assist with. This could be grocery shopping, meal preparation, house cleaning, or accompanying them to medical appointments. Offering to take on some of these responsibilities can make a big difference.
Suggest Support Groups: Encourage your dad to join a local Alzheimer's support group. These groups can provide emotional support and practical advice from people who are going through similar challenges. Attending together may make it more appealing to your parent.
Professional Assistance: While it's understandable that your parents may resist professional help, there may come a point where it becomes necessary. You can gently suggest that they consult a healthcare professional or a home care agency. These experts can provide guidance and potentially alleviate some of the caregiving responsibilities. Your social worker or local support group may also refer you to a local facility that has grant money to defray some of the cost.
Offer Emotional Support: Be there to listen and provide emotional support for the primary caregiver. Caring for someone with Alzheimer's is emotionally taxing, so lending a compassionate ear can be a tremendous help.
Respecting Their Independence: Respect your parents' wishes and autonomy while also trying to balance their well-being. They may be hesitant to accept help, but it's crucial to find a middle ground that respects their independence while ensuring their safety and care.
Seek Mediation: If conflicts arise within the family due to differences in caregiving opinions, consider involving a mediator or counselor to facilitate a conversation and find common ground.
Keep Revisiting the Conversation: Caregiving situations can change over time. Continue to have open conversations with your parents and reassess the situation as their needs evolve. Finding a specific idea that connects with their needs and offering it at another time can be effective to getting a yes.

Remember, providing support to a primary care partner can be a complex and emotionally charged process. Respect your parents' autonomy and choices while striving to ensure the best possible care for the person with Alzheimer's. Your patience, understanding, and willingness to help will be essential during this challenging journey.

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