Learning Through Forgetfulness

Confusion, disorientation and mood swings are just some of the symptoms commonly associated with Alzheimer’s disease. However, family members caring for a loved one with Alzheimer’s can find themselves dealing with the very same issues.

The range of services and options available to caregivers can seem overwhelming, especially when they are already balancing the practical concerns of the disease with its emotional toll.

“People need to know that we’re available for them,” says Jenny Miller of Rhode Island Senior Concepts. “We do have education and information to help families. They don’t have to handle this alone.”

Miller, a geriatric care manager, offers advice and expertise for families during any stage of a dementia diagnosis. The key to making the best choices, she says, comes through observation -- watch for changes in behavior or activity and notice contradictions between a loved one’s words and actions.

“Be in tune to what’s going on with your senior,” she says.

Donna Carbone was “in tune” to changes in her Aunt Mary’s condition. She noticed a difference in her aunt’s physical and mental abilities, both of which appeared around the same time.

“With her,” says Carbone, “it just happened all at once.”

Eventually, it became necessary for “Auntie Mary” to be placed under full-time nursing care at Harborside Greenwood Nursing. The red flag for Carbone was a marked change in her aunt’s overall memory, and the biggest sign was Mary’s increasing forgetfulness. Dementia was officially diagnosed when she was admitted.

Initially, Carbone says, it was a relief when her aunt was placed at Greenwood, especially when declining physical ability led to Mary’s falling frequently. Watching the progression of dementia since then, Carbone says, “Now it’s just sad.”

For Carbone and others caring for Alzheimer’s patients, emotional stress is a common part of dealing with the disease. The Alzheimer’s Association recognizes this, and local chapters of the Association provide education, care consultation, and support groups for caregivers nationwide.

Each patient’s experience with Alzheimer’s is different, and there are varying levels of dementia. In some cases the gap between independent living and nursing care is wider, with adult day care centers and assisted living facilities reinforcing patients’ quality of life.

Suzanne Skory is a social coordinator for West Bay Manor in Warwick. She credits activities, especially memory games and hands on projects, with helping patients focus and maintain awareness. Doing something physical “makes the patients feel useful and important,” she says.

West Bay Manor does have a dementia unit in their assisted living housing. Residents are monitored through the “Wander Guard” system, which alerts the staff when a patient leaves a designated safe area. The assisted living facility is available to patients unless they display behavior that may impair their safety. At that point, Skory meets with family members to suggest a move to long-term care.

While searching for a nursing facility, Skory suggests families “treat it as though you were looking for child day care.” Pay special attention to the way the staff greets you, be aware of cleanliness and odor, look at the activity calendar, and be sure you can drop in to visit any time.

Kathleen Ren at the R.I. Alliance for Better Living never recommends assisted living for an Alzheimer’s patient if full-time nursing care is probable in the near future. Changing the environment often undermines the stability dementia patients need in their daily activity, she says. Long-term care is necessary when patients cannot perform day-to-day activities, when they are unable to handle their own medications, or when they are wandering at night.

Ren says the need for patient care, safety, and activity programs outweighs the aesthetics in a nursing home. She stresses that “TV is not an activity,” and that good staff interaction with patients is crucial.

When the time comes for skilled nursing care, the biggest resource a family can have is peace of mind in their choice of a facility. Theresa Coutu, Ren’s colleague at the Alliance, tells family members to inspect potential nursing homes at different times and on different days and to watch how the staff works with the patients.

“Don’t settle for the ‘nice tour,’” Coutu says. “You need to see how the staff interacts.”

Having the support of a facility’s nurses and administration is one of the best resources available to a family. Communication with the staff is crucial in monitoring quality of care and quality of life for a loved one.

At Riverview HealthCare Community in Coventry, social worker Lisa Morango is a vital link between a family and the nursing staff. When a patient is admitted to Riverview, a family meeting is set up with the members of their loved one’s care team. A care plan is put in place, and the team does its best to orient both the patient and the family to the facility.

Riverview has two alarmed units for dementia patients, and stability in mealtimes and keeping a regular staff are part of giving the Alzheimer’s residents the constant foundation they need with the disease.

Morango says she appreciates having another social worker on staff at Riverview. This allows her the freedom to get to know patients and family on a more personal basis, something she would be unable to do otherwise.

Pat Neville is a CNA in the dementia wing at Riverview. Neville has worked with Alzheimer’s patients for three years and she counts working with “happy patients” as one of the greatest rewards of her job.

“I would rather take care of these patients than any of the others,” she says.

Neville says that having understanding is the best thing family members can do for their loved one.

“The most important thing is understanding when they’re having a bad day. When they’re having an off day, you just have to be their support. And that’s very hard to do because a lot of times [the family] is in denial.”

Print Article

Email Article

View All Articles

How to subscribe to feeds