Jennifer H.

In 2011, Jennifer H. first noticed that her mother was having trouble with her short-term memory. Jennifer didn’t believe it was serious at first, but, over time, her mother’s condition escalated to include paranoia, getting lost or confused easily, suffering from hallucinations, making calls to 911 to report serious crimes that hadn’t happened, and leaving home for days at a time without telling anyone where she was going. Jennifer’s family tried watching her all the time, but found this wasn’t possible, and Jennifer’s mother continued to leave home without her family’s knowledge. When they took the car keys away, her mother took the golf cart, and when they took that away, she wandered away by foot. One night in 2018, after leaving her home on foot, Jennifer’s mother was hit by a car. This unfortunate event ultimately helped the family finally get an official diagnosis of dementia and secure care in an assisted living facility.

The COVID-19 pandemic has brought new concerns about the care her mother is receiving. Since visits to her mother’s assisted living facility aren’t allowed, Jennifer hasn’t been able to witness the care received and hasn’t been informed of any of her mother’s health changes. However, due to a recent hospitalization, she learned her mother is now completely incontinent. When she asked the staff at the assisted living facility about it, they commented that her mother really needed plastic mattress pads. Jennifer worries her mother has been laying on a soiled mattress for months. Now, the family has hired a full-time caregiver to be with her mother to ensure she is receiving proper care but wonders how long they can afford that additional expense on top of the $6,000 they are already spending per month for the assisted living facility.

Jennifer was surprised by the insensitivity she encountered by specialists and feels that health care providers and community services, such as police departments, need systemic improvements on aging related social issues and health conditions. Although the police department had been trained to handle Alzheimer’s, the main obstacle with care was her mother being an adult. They could not take her in for assessment under [a local law], which is used for mental health crises. There is a huge barrier for the family getting family members with dementia the care they need, especially those with paranoia and hallucinations. She found there to be huge gaps in time between the initial recognition that there is a problem, getting an official diagnosis, and finally getting help. Education for social services needs to focus on caregiver needs, how to obtain in-home care for families to be able to keep their family members safe, and how to financially plan and manage the expenses of caregiving.