When Dementia Takes an Unexpected Turn: Real Stories of Crisis Situations

As the owner of Family Choices for Dementia, a senior living referral service, I have encountered countless families grappling with the realities of dementia. Each story is unique, yet they all share common themes of love, fear, and the urgent need for support. In this blog, I want to share true stories about people suffering from dementia and the unexpected crisis situations that occur, reminding us of the importance of being prepared and proactive and having a plan in place. At Family Choices for Dementia, we help families prepare and have a plan in place, such as home care or assisted living memory care, in case a crisis occurs.

John and Cindy's Story: The Heartbreaking Reality of Caregiver Burnout

John suffered from Alzheimer's for years, and his wife, Cindy, took on the role of his primary caregiver. They had seven adult children who were increasingly worried about their father, noting that Cindy, who used to be very social, was now home all the time. Despite their offers to help, Cindy consistently refused assistance.

When I met with one of their daughters, she asked how I could help. I explained that we could arrange for someone to assist John or get him into an adult day program on Mondays. However, I expressed greater concern for Cindy, highlighting the importance of her staying active and social. Less than 14 hours after our meeting, I received a call from the family: Cindy had died of a sudden heart attack. Initially, I was in disbelief, thinking they meant John. This tragic event underscored the severe toll caregiver burnout can take, emphasizing the need for support and respite for caregivers.

Jane's Story: The Midnight Wanderer

Jane, an 80-year-old woman with dementia, was fiercely independent despite her diagnosis. Her son, living across the country, tried to help by arranging support, but Jane consistently fired anyone he hired. During a visit, her son took her car keys to prevent her from driving. However, Jane had a spare set. One evening, her son received a frantic call from a neighbor saying Jane had driven off in her car and had not returned. She was found hours later by the police, parked in a lot, disoriented and confused. This incident was a wake-up call, highlighting the need for more comprehensive care and supervision.

John's Story: The Medication Mix-Up

John, a 75-year-old man with dementia, managed his own medications. One day, he developed a headache and took a pill. Forgetting he had already taken his medication, he took more, leading to an overdose. John was hospitalized in a geriatric psychiatric unit for two weeks. His family realized that medication management was critical and beyond his current capabilities, prompting them to seek assisted living options with professional oversight.

Mary's Story: The Devastating Car Accident

Mary, a 78-year-old woman diagnosed with Alzheimer's, lived alone in her condo just minutes from her daughter's home. Mary still drove short distances, mainly to her daughter’s house. Her daughter was anxious about having the conversation about stopping driving but decided to address it over the weekend. Tragically, the next day, Mary was involved in a car accident that totaled both vehicles and injured a family of four. Thankfully, everyone was released from the hospital, but the incident underscored the dangers of driving with dementia and the urgent need for intervention.

Alice's Story: The Dangerous Escape

Alice, an 82-year-old woman with dementia, lived alone but was frequently checked on by her family. Though pleasantly confused, she seemed to manage at home. Alice began showing signs of agitation in the afternoons, and it was suggested that someone stay overnight with her. Unfortunately, a few days later, Alice attempted to climb out of her second-story bedroom window at 2 a.m. This dangerous incident made it clear that Alice needed more structured and supervised care to ensure her safety.

Bill's Story: The Aggressive Outburst

Bill, a 70-year-old man with moderate stage Alzheimer's, was known for his aggressive and agitated behavior during the day. His wife was determined to keep him home for as long as possible. One day, I received a frantic call from her: Bill had wandered across the street, approached a longtime friend and neighbor, and punched him in the face, accusing him of having an affair. When the police arrived, Bill bit an officer on the arm. This alarming episode underscored the need for proper training in redirecting and managing aggressive behaviors, and the importance of knowing when professional care is necessary.

Mary's Story: The Hidden Costs of Hesitation

Mary, a 74-year-old woman living alone, had been diagnosed with Alzheimer's disease. Despite her condition, she was adamant about staying in her home. Her son, recognizing the risks but respecting her wishes, arranged for someone to check in on her regularly. Mary had fallen a couple of times, raising concerns about her safety. Her son was hesitant to move her to a senior living community due to the $8,000 monthly cost.

However, a month later, Mary fell and broke her hip. She was sent to a rehabilitation center and, due to her increased care needs, could not return home. Mary now required a two-person assist, and her son faced the reality of paying $17,000 a month for her care in a skilled nursing home. This situation became a financial strain and a heartbreaking realization that, had they moved her earlier, Mary could have remained in a more affordable and supportive environment.

Tom and Janet's Story: The Breaking Point of Caregiver Burnout

Tom, a 65-year-old man, was dedicated to caring for his wife, Janet, who had Alzheimer's. Determined to keep her at home as long as possible, Tom stopped working and provided 24/7 care, ensuring Janet was never alone. I checked on the couple every month and encouraged Tom to visit communities as part of his plan for when he could no longer care for Janet. We did visits and had a plan in place for when he was ready, but Janet was undoubtedly ready long before Tom was.

One Saturday night, at 9 p.m., I received a hysterical call from Tom. He couldn't do it anymore and had left Janet at the house. He drove to a parking lot and felt completely lost. I advised him to call a family member to be with Janet, and within 48 hours, we moved Janet into an assisted living community. This allowed Tom to resume his role as her husband and spend quality time with her, without the overwhelming burden of being her sole caregiver.

Conclusion

These stories illustrate the unpredictable nature of dementia and the crises that can arise without warning. At Family Choices for Dementia, we are dedicated to helping families navigate these challenging times. When a loved one is diagnosed, we will meet with the caregiver as early as diagnosis so they understand their options, costs, and resources. We will research senior living communities, provide costs, set up tours, accompany, and help with the transition process from home to a community.

If your family is experiencing a crisis or if you are concerned about the safety and well-being of a loved one with dementia, please reach out to us. We are here to support you every step of the way, providing expert guidance and compassionate care.