Beyond Forgetfulness: Understanding and Supporting Someone with Alzheimer’s

Chartered client Sarah knows all too well the long shadow Alzheimer’s disease can cast on families. Witnessing her father’s decline has been a heartbreaking journey, filled with frustration and a deep sense of loss.

“It started subtly,” Sarah recalls. “Misplaced keys, forgotten appointments, struggles to find the right words. We brushed it off as normal forgetfulness that comes with age.” But as time passed, the forgetfulness morphed into something more concerning. Simple tasks became overwhelming, and conversations repetitive. “My dad fell prey to scams,” Sarah shared, “which left him feeling vulnerable and embarrassed to admit his mistakes.”

Sarah’s attempts to discuss her father’s condition were met with resistance. “He wouldn’t accept there was a problem,” she explains. “It was incredibly frustrating. How do you talk to someone about a disease they refuse to acknowledge?” This is a common challenge for families facing Alzheimer’s. The disease’s insidious nature can cloud judgment and make admitting vulnerability difficult. But Sarah’s story emphasises a crucial message: early conversations about future care, even before any signs of dementia, are essential.

Wall of Denial

One of the hardest aspects was dealing with her dad’s denial. He adamantly refused to discuss his condition or accept help. This extended to finances, daily responsibilities, and his overall deteriorating state. His pride and stubbornness made constructive conversations nearly impossible. Sarah’s attempts to discuss planning and support were met with resistance, sometimes anger.

The Burden of Responsibility

As the signs became undeniable, Sarah’s concerns grew not just for her dad but also for her disabled brother, who depended on him entirely. The realisation that her dad’s declining ability to manage finances could jeopardise her brother’s future added immense pressure. He managed his own investments, paid for his son’s medical aid, and handled all financial affairs. If he were to pass away or become incapacitated, Sarah would be left to untangle the financial mess.

Taking Action

Over time, Sarah took incremental steps to secure her dad’s and brother’s future. This involved gathering information about his assets, creating a folder with important documents, and gaining third-party access to his medical aid. She managed to set up a trust for her brother.

Emotional Toll

The emotional toll of this journey cannot be understated. Witnessing her dad struggle with cognitive tests was heartbreaking. The frustration of his denial, coupled with the immense responsibility of managing his affairs, strained her relationships with him. It was difficult not to become resentful as her time and energy were consumed.

Practical Advice

For those in similar situations, here are some practical steps to consider:

• Legal Preparedness: Understand the limitations of the power of attorney and consider appointing an administrator or curator for someone who loses mental capacity.
• Financial Planning: Ensure all financial documents are organised and accessible. Gain access to bank accounts, medical aid, and other essential services.
• Seek Professional Help: For guidance and support, consult financial planners, legal advisors, and medical professionals.
• Emotional Support: Don’t underestimate the emotional burden. Seek support from family, friends, or professional counsellors.

Approaching the Conversation

Planning for the future empowers you to make informed decisions when the time comes. That’s why having open conversations, however difficult, is essential. They require a great deal of empathy and a willingness to navigate challenging emotions. Most importantly, they need patience, as reaching an understanding may take several conversations.

Remember, you don’t have to navigate this journey alone; organisations https://www.dementiasa.org/ and https://www.adasa.org.za/ are there to help.