Ask the Experts

Dealing with Controlling Relatives as End-of-Life Approaches

Learn how to handle uninvolved family members who become controlling at the end of life. Get tips on setting boundaries, honoring wishes, and protecting yourself legally and emotionally during this difficult time.

Diane Carbo

12 Oct 2023 — 6 min read

The strain of impending loss reveals the fractures in family relationships.

Sue Anne writes,

Navigating a challenging situation, I find myself grappling with controlling relatives who have been conspicuously absent in offering assistance for the past decade. Now, as we approach the end of my loved one's life, they suddenly manifest concern. This unforeseen change in behavior both upsets and offends me deeply.

Over the course of ten years, I have shouldered the role of sole caregiver for my father. During this time, my siblings and other family members have been noticeably absent—devoid of visits, meals, or even a phone call to express the slightest interest or concern. Through the demanding times when I sought care assistance, sought respite, or yearned for a break, their support was non-existent. This accumulation of unaided struggles has left me feeling a potent mix of anger and resentment, exacerbated by their newfound inclination to monitor the situation.

Interestingly, as my father's caretaker, I have been proactive in engaging in conversations with him about his preferences. My unwavering commitment to honoring his wishes has driven me to make every effort in ensuring his comfort. However, the mere mention of "hospice" seems to have triggered a dramatic shift in my family's stance. They are now behaving as though I am recklessly permitting my father's demise.

In the midst of grappling with these emotions, I find myself at a crossroads: how do I handle this situation without causing drama, fighting, and arguments? My ultimate goal is to navigate these uncharted waters with poise and sensitivity, preserving the dignity of our loved one and maintaining a semblance of unity amidst the complexities of our family dynamics. Your insights would be invaluable in helping me navigate this delicate terrain.

Response:

Firstly, I want to express my heartfelt condolences for the situation you find yourself in during a period when you're already contending with your own feelings of loss and grief. Unfortunately, your experience is far from uncommon. Initial bursts of family support often fade away after the onset of illness, an accident, or trauma. Caregivers frequently endure months and even years without the backing of their family.

Relatives who were previously uninvolved tend to have their own motivations. They might grapple with guilt or, regrettably, be waiting for their perceived entitlements once the person passes away.

Addressing the legal aspects of your caregiving should be a priority. Familiarize yourself with your rights, including matters like having Power of Attorney for medical and financial decisions, or being designated as the executor or executrix of the will. Do you have a family caregiver contract in place? It's essential to safeguard yourself and your rights, and consulting an attorney can help ensure you avoid potential homelessness or legal entanglements.

Difficult as it is to admit, it's prudent to take precautions such as locking up valuables, including precious jewelry. Years of experience in this field have taught me to approach uninvolved family members with caution, as vulnerability can sometimes be exploited.

Transitioning to a more positive note, honoring your father's wishes takes precedence. If he's able to communicate his thoughts on involving other family members, their input should be considered. If he's unable to express his preferences, showing empathy for the uninvolved family members, despite the circumstances, can foster a sense of understanding.

Setting boundaries and expressing your limits is well within your rights. If family members express a desire to help, it might be beneficial to find a compromise that satisfies everyone. If they're inclined to assist with caregiving, allocate specific times and tasks that they can take charge of. If you wish to limit visiting hours, even at home, crafting a clear visiting schedule and sharing it with everyone can help manage expectations. When people reach out, you can inform them of the schedule, ensuring that communication remains harmonious.

A thoughtful explanation to all involved parties about seeking peace and reflection during this time can help create a calm and serene environment at home. You have every right to preserve the sanctity of your space and minimize disruptions to your life.

In instances where hospice care is in place, their staff members are often adept at managing uncomfortable family dynamics and can offer valuable guidance.

Ultimately, it's important to recognize that this is a challenging period for everyone involved. Despite the difficulties, try not to internalize the situation personally. The focus should remain on providing the best care for your loved one and navigating the complexities of the circumstances with grace and patience.