Patient Stories

Helping a Son Navigate His Mother’s Journey with Dementia

Russell Grand recalls his mother, Pauline, has always been strong-willed, smart, and determined.

“The most important lesson my mother taught me is not to let anybody walk all over you,” Russell says. “Stand your ground.” While that lesson has helped Russell throughout his life, Pauline’s adherence to it has presented many challenges over the past few years as her health has declined and she now lives in a long-term care facility with advanced dementia. Wanting to ensure his mother’s safety and comfort, Russell, an only child, has entrusted Care Dimensions with helping navigate Pauline’s end-of-life journey.

Struggle for independence

Russell recalls noticing his mother’s judgment was becoming compromised starting around 2011. She also was becoming resentful, confused, and agitated, which are common behaviors for people with dementia. Pauline was at risk of falling, so her doctor told her to use a walker all the time. She refused. Determined to maintain her independence, she moved into a one-bedroom apartment.

“It was very difficult for my mother to face aging issues and often she resented the intervention, which became a paramount necessity to ensure her safety and overall well-being,” Russell says. 

Palliative care at home

Pauline fell several times, which landed her in the emergency room. In the summer of 2019, she began palliative care at home with Care Dimensions. Working in concert with Pauline’s primary care doctor, Nurse Practitioner Gabriel Belosevic visited about every three weeks to check on her vitals, medication compliance, mood, hydration, and other factors to help keep Pauline safe at home and circumvent more emergency room visits. Belosevic also performed some screenings that normally would require a doctor’s office visit. 

“Gabriel was wonderful with my mother,” Russell recalls. “He could communicate to her in some ways I couldn’t. And in many cases, he validated concerns I had about her mental and physical status." 

“When the pandemic hit, my colleague Starline Francois, NP, and I were Russell’s lifeline because of our expertise. We assessed her at home so she didn’t have to go to the doctor’s office, and then we discussed her condition, treatment options and overall care needs to give him confidence in making decisions about her care, including when the time came to transition to hospice care,” Belosevic notes.

Qualifying for hospice

Last September, Pauline fell and broke four ribs. After a five-day hospital stay, she was referred for rehabilitation at the German Centre in West Roxbury. While Pauline could get around and dress herself, she did not comply with the rehabilitation routine nor understand the rehab program. She was combative and tried to pack her clothes and leave. She was moved to a dementia unit and the care team recommended she have 24/7 care.  “I asked if she could have the additional assistance of hospice care from Care Dimensions,” said Russell.

Russell recalls the transition to hospice for Pauline was seamless. Her RN case manager, Maria Ortiz, called Russell to introduce herself and explain the hospice care team’s plan, including medications for Pauline’s comfort. Care Dimensions’ specialized Dementia Support Program creates a personalized care plan for each hospice patient suffering from dementia, whether they are experiencing moderate or severe symptoms, to maximize their comfort and quality of life. The program offers a much-needed layer of assistance to patients and families, reducing hospitalizations and emergency room visits, and relieving some of the stress on caregivers.

“Keeping families informed throughout the hospice journey helps alleviate some of the concerns and questions family members may have during such a difficult time,” says Ortiz. “This need for strong communication has been heightened this past year because of COVID-19, as most healthcare facilities restricted visitation. Because our team was still able to see Pauline in person, while Russell couldn’t, we were able to help him feel more present, connected, and provide reassurance that his mother was well-taken care of.”

Pauline receives personal care from a Care Dimensions hospice aide five days each week. Her hospice care team also includes a social worker and chaplain. Russell says conversations with them have validated his feelings and given him a different perspective about how to talk to his mother.

Russell also appreciates the good ongoing communication between the facility's doctor and the hospice team. “Strong communication with the patient’s primary doctor and family is crucial to meeting goals of care for a person with advanced dementia,” adds Clinical Director Mary Pillay. “Our team has had many Zoom meetings and phone conversations with Russell to discuss his mom’s care plan and answer his questions, and we work closely with the clinical team at the facility.”

Hospice helps patient and caregiver 

“Dementia is a merciless and unpredictable disease. I’m grateful that Care Dimensions’ hospice staff has guided me on what the disease does, and how it progresses. I want to make my mother as comfortable as possible and Care Dimensions is helping me do that. No one wants to watch a loved one die with dementia, but hospice can make it easier by teaching you how to communicate, and the best options to make them comfortable. It’s important to have that resource, which can make the difference between sanity and driving yourself crazy not knowing what to do.”