Dear Laird: My dad has Alzheimer’s, and my wife and I are his primary caregivers. We could really use some help from my siblings, but everyone lives so far away. Any advice? Signed, Miles Apart

Dear Miles: Disease puts stress on families, and it’s even tougher when everyone lives far away. 

When a family member is diagnosed with a brain disorder, not everyone reacts the same way. Some might be ready to jump in and help, particularly if they were close to the person diagnosed. Others might not show much interest, and some might even refuse to help. 

These mixed reactions can be particularly tough on a spouse who’s the primary caregiver. Parents often sacrifice a lot for their kids, so it’s natural for them to hope their children will step up when needed. However, being part of the “sandwich generation”—caring for both kids and aging parents—adds another layer of stress to their already busy lives.

As people often relocate for work, we’ve moved away from the agrarian tradition of multigenerational families living together or nearby. These barriers prevent family members from providing help even when they want to. 

As the disease progresses, some might not fully grasp the situation, leading to judgments about the caregiver’s decisions. Patients might feel neglected due to the lack of contact with distant relatives and may even alter their wills to benefit the caregiver who is present.

If you’re an out-of-town family member, here are some practical ways you can support the caregiver:

1. Visit the patient: Spend at least two hours alone with the patient to understand the effects of their condition. Initially, they might mask their symptoms, but over time, you’ll catch a glimpse of their true state. Use this visit to also give the caregiver a much-needed break.
   
   
2. Support the caregiver: Your role is to support, not to challenge the primary caregiver’s decisions. Avoid arguing or pushing unwanted advice. If they’re considering a care facility, support their decision without guilt-tripping them. They’re likely exhausted.
   
   
3. Communicate with family: Discuss situations with key family members (i.e. children/siblings) to ensure everyone is on the same page or at least in the same chapter. This can lessen the caregiver’s burden of repeating themselves.
   
   
4. Establish a single communication method: Set up a convenient way for family to communicate, such as Zoom meetings, an email list or a private Facebook group. 
   
   
5. Ask the caregiver about their support network. Are there friends and neighbors who help? Reach out to them, express your gratitude and learn how you can best support the caregiver.
   
   
6. Put aside personal differences: If you have a strained relationship with the caregiver, set it aside. Focus on the patient and express your willingness to help.
   
   
7. Engage: Don’t assume you have nothing to contribute. Simple gestures like writing a kind note or making a phone call can significantly make a difference for you, the patient and the caregiver.