Providing Memory Care at Home: Always an Overwhelming Job

By Deborah Jeanne Sergeant

People with Alzheimer’s or another dementia will eventually require support to live at home safely. Oftentimes, that begins with family caregivers such as Myzette Howell, 53, of Buffalo.

Her family suffered some tough blows in early 2019: the death of two of her siblings and her parents’ dementia diagnoses from Dent Neurological Institute. 

Then COVID-19 hit and Howell was laid off. 

In hindsight, Howell views the timing of her layoff as helpful since it allowed her to become her parents’ full-time caregiver.

Her mother, now 88, had worked as an assistant principal at West Hertel Academy in Buffalo. Her father, 90, retired from General Motors. The couple has been married 68 years.

Though Howell provides most of their care, her parents participate in an eight-hour adult day program at Lord of Life Lutheran Church Monday, Wednesday and Friday.

“It’s invaluable. The people there are amazing,” said Howell.

A family friend helps her father with a weekly shower and spends a couple hours with him so Howell can mow the lawn, her “therapy.”

Howell has developed helpful strategies, like household cameras, accessibility remodeling and streaming favorite programs to minimize her father’s nocturnal wandering.

Howell orders fully cooked, microwavable meals delivered from Factor 75, whose keto diet plan appears to reduce her parents’ sundowning.

She realizes that when her parents’ behavior is difficult, it is not because they want to make things challenging.

“This time I can never get back again,” she said. “I’m so happy and thankful. They’re still amazing, wonderful, beautiful people.

“I know there will come a time where I may have to consider a nursing home—but I’m pleased that by the grace of God, I’ve been able to do it.”

For those struggling with caregiving, the Alzheimer’s Association operates a 24/7 helpline, 800-272-3900, online information, support groups and educational programming.

“It’s a very difficult form of caregiving because the person is declining,” said Andrea Koch, director of education for the Alzheimer’s Association, WNY Chapter. “It’s an extended grief process as you lose this person over time in a gradual, relentless way.”

The association can help identify resources that can ensure the patient’s wishes are carried out and that the caregivers have the support they need.

“Having a strong support network leads to better outcomes later in the disease,” Koch said. “If you have someone you know is in your corner and is prepared to help, it’s easier to pick up the phone and ask for help.”

Early diagnosis offers many benefits, according to Allison Case, registered nurse and program director of the Center of Excellence for Alzheimer’s Disease, UBMD Neurology and department of neurology at University at Buffalo.

“You have more time to grasp what’s going on,” she said. “A lot of patients come in without a healthcare proxy and power of attorney. To be given a life-changing diagnosis, it’s good to have all those things in place before they’re not able to make those decisions.”

The department of neurology can help plan how to get supports and resources they will likely need, such as in-home aides, respite caregivers, safety equipment and personal emergency response systems and door alarms.

“All these things help people age at home longer,” said Rachel Eisenberg, licensed clinical social worker there. 

Care at home can help preserve finances. The average life expectancy after an Alzheimer’s diagnosis is five to 10 years. The cost of living in a nursing home in New York averages $11,370 per month, or $1.3 million in 10 years without inflation adjustment.

The mental health of Alzheimer’s caregivers may be overlooked.

“Caregivers seldom call until they reach that crisis or point that they can’t do it any longer or their health is suffering,” said Andrea MacDonald, registered nurse, clinical operations manager for Nascentia Health, which operates in Buffalo.

She encourages caregivers to seek respite programs, whether a few scheduled in-home hours per week or as temporary stays at a long-term care facility. 

Families can also schedule care with a home health aide through Nascentia Health or other organizations. MacDonald also mentioned day programs, which gives patients a regular place to go for supervised care, activities and socialization.

“If you can take care of yourself, you’ll be better and stronger to take care of your loved one,” said Susan Spina, licensed clinical social worker who consults for Nascentia. “Self-care is very important. I can’t tell you how many folks do it on their own. They may have an elderly spouse. They never want to put them in a nursing home and they themselves are getting worn down,” she said. “Sometimes, they really just don’t know where to turn and on occasion, the caregiver breaks down.”

While challenging, caregiving brings often unexpected rewards, including knowing that the patient’s wishes have been honored. Caregivers “feel great about the care that they provided,” Spina said. “They feel that this person had increased quality of life. They know them and their needs better than anyone else and they understand their loved one better than anyone else. I consider it unconditional love.”