When a loved one receives a diagnosis of Alzheimer’s Disease or another form of dementia, a flood of emotions and thoughts emerges. Some may find it difficult to accept: “Mom just seems a little forgetful…” or “Dad’s short-term memory might be fading, but his long-term memory is still sharp!” It can be challenging to see beyond the immediate needs for care and safety, consumed by the day-to-day tasks. Sometimes, the diagnosis comes as a shock. You might have noticed subtle changes in habits, communication, or behavior, but dementia? It can feel surreal. Every individual’s experience with dementia is unique, and its effects vary. What may start as simple forgetfulness can escalate to potentially dangerous situations, such as leaving the stove on, struggling to recall words for everyday objects or emotions, or getting lost while away from home. The progression of symptoms varies, with some experiencing rapid changes while others observe a gradual decline. As you come to terms with the reality of the situation, it’s crucial to look ahead and plan accordingly. Taking proactive steps today can alleviate stress and uncertainty in the future.
The Importance of Early Planning
I share this story now, having learned the hard way. About seven years ago, before delving into the senior living industry, I found myself on the deck of a beach house with my mother-in-law, Joanne. We were enjoying the picturesque view and the soothing sounds of the ocean when she turned to me and said, “My mother had Alzheimer’s, you know. I have it too. There will be a day when I don’t know who you are, so I want to tell you now that I love you.” Her words caught me off guard, and I couldn’t help but burst into tears. We had already noticed signs of forgetfulness, but they hadn’t seemed severe. However, as time passed, more signs emerged—leaving water running, forgetting where she put things, and leaving the stove on. We gradually came to accept these changes as just part of who Joanne was. As the months went by, these signs became more pronounced, making it increasingly challenging for my father-in-law, who never once complained. The family gathered to discuss how to support Joanne better. We attempted in-home care briefly, but my father-in-law was uncomfortable with the intrusion on their privacy. Next, we explored adult day care. Joanne resisted at first but eventually attended a few times a week. She returned home, speaking fondly of helping others there, and for a while, it seemed like everything was manageable. My father-in-law diligently oversaw her care, but over time, the situation became more taxing for him. The repetitiveness and uncertainty wore him down, and the constant vigilance became overwhelming. Then came the tipping point. One day, while assisting Joanne with bathing, both she and my father-in-law fell. Keeping Joanne at home was no longer viable, but we found ourselves without a plan.
Health Care Planning
Through this experience, I’ve come to understand the critical importance of early planning for the well-being of the entire family. Health care planning, in particular, is paramount before the onset of dementia. Advance directives, such as a Durable Power of Attorney and a Living Will or Health Care Proxy, are vital legal documents that articulate a person’s medical treatment preferences. These documents encompass decision-making abilities, financial considerations, and medical directives, ensuring that the individual’s wishes are honored. While many families aspire to care for their loved ones at home until the end of life, practicality and safety often necessitate alternative arrangements. As dementia progresses, individuals may require around-the-clock assistance for care and safety, such as to prevent wandering. In such cases, assisted living memory care communities can be invaluable. These communities prioritize the needs of residents, striving to maintain their independence in a secure environment. Within these settings, residents flourish in a supportive, engaging community where their physical and emotional needs are met.
Steps to Prepare
When a loved one is diagnosed with dementia, it’s crucial to plan ahead. Currently, there is no cure for Alzheimer’s and related dementias. While some treatments may temporarily manage symptoms, the condition typically continues to decline over time. To prepare for the future, consider the following steps:
- Initiate Family Discussions: Initiate discussions with family members early on to ensure everyone is on the same page.
- Ensure Legal Documents: Ensure that all necessary legal documents, such as advance directives and powers of attorney, are in place.
- Consult with the Doctor: Have conversations with the primary care doctor to discuss current and anticipated future situations and to explore available support options.
- Financial Assessment: Assess the financial situation to plan for potential care needs and expenses.
- Explore Memory Care Communities: Visit memory care communities early to evaluate and find the best fit for your loved one and family.
Ultimately, we all strive to make the best decisions for our loved ones. Planning ahead helps to ensure that those decisions are well-considered and in the best interest of everyone involved. As for Joanne, she moved into a community where she received the care and safety she needed until she passed away last year. While the transition was challenging for my father-in-law, he recognized and, importantly, quickly realized that it was the best option for Joanne’s well-being. Written by Anne Marie Sousa