November is Alzheimer’s awareness month in the State of New Jersey. Unfortunately, some families will not need a governmental decree to raise their awareness of Alzheimer’s.
According to Beron Jewish Older Adult Services director Adrienne Epstein, it is all too common for families to become aware during the Thanksgiving holiday that a loved one they haven’t seen for a while has Alzheimer’s or dementia.
Adult children who live far away from parents may suddenly see that their mom or dad is not taking part in conversation; instead, their partner (who has become their caregiver) answers questions and speaks for them, ‘in an effort to shield the loved one’s problem. Quite possibly, the partner has been doing this for a long time, but this time mom or dad’s memory deficit is too obvious to hide.
Epstein has heard this scenario from many people who call Beron-JOAS at this time of year, worried that a parent has Alzheimer’s or dementia. “This is the time of year when I get the most calls from people. At the holidays, they get a wake-up call. They call for advice and looking for support,” said Epstein.
Fortunately, local Jewish community organizations can help families grappling with the immensely difficult problem of caring for a loved one suffering from conditions causing memory loss. Beron-JOAS has an adult day care program in Atlantic City, and Seashore Gardens in Galloway offers both home care and a specialized inpatient unit for those with memory loss issues. Both organizations also offer caregiver support groups, and will even do home visits to help families come up with a strategy for coping with the problem.
What is the first thing to do when you notice a loved one has memory issues? Take them to a general practitioner who sees them on a regular basis, said Epstein. If the general practitioner detects a problem, the next step is an evaluation by a neurologist.
Not all memory issues are the result of Alzheimer’s, stressed Epstein. Sometimes, the problem is the result of a reaction to medication or a bad combination of medications. In rare instances, the person might be suffering from Normal Pressure Hydrocephalus, a condition that is also accompanied by continence issues and is reversible with a brain shunt.
The tragedy of Alzheimer’s is that it is not reversible. “There is really no way to reverse the memory loss once you have it. It’s a progressive thing,” said Epstein.
Existing medications may slow down the disease but do not get rid of it, although new research is looking at ways this might be possible in the future.
Caregiving becomes the central issue. “The most important thing I tell people is: Try not to do it alone. It’s a very stressful job. Much as you love that person, it’s very difficult to care for them without help.”
Programs like the Adult Day Care program at Beron-JOAS can give caregivers needed respite. The program, which is for those in early to moderate stages of memory loss, is offered Mondays, Tuesdays and Fridays from 9 a.m. to 3 p.m. at the Rosin Senior Center in Atlantic City. Transportation is available to those who live on Absecon Island, and fees are on a sliding scale. “It’s really a warm and nurturing environment. There are also lots of resources for families in the program,” said Epstein.
Respite for caregivers can also be found through private home care agencies, including Seashore Gardens without Walls (609-748-4619), as well as through organizations offering trained volunteer respite workers, such as the Family Service Association (877-272-2331) in Egg Harbor Township and the Atlantic County office of The Alzheimer’s Association (609- 484-3397), which is located Northfield, according to Epstein.
“The problem is that people don’t feel comfortable having a stranger come to their home to be with someone with Alzheimer’s. Sometimes it takes some kind of catastrophe situation for people to come around [to finding help], such as the illness of a caregiver.”
This scenario, in which an elderly, stressed-out caregiver gets sick, is all too common, said Epstein. “When the caregiver gets sick, the person with memory loss often gets institutionalized.”
This was the situation that played out for Margate native Nancy Snyder’s family when her late mother was suffering from severe dementia. Snyder moved back to the shore from North Jersey to help take care of her mother when her father, who was in his 90s, “became very ill taking care of her,” she said.
At first, the family devised a caregiving schedule that included the three adult children helping out, especially at night. “We were a team,” she stressed. But eventually, even that wasn’t enough.
“We saw it was too much, caring for her at home. My dad was not sleeping, not eating and could barely walk. Mom sat in a wheelchair in front of the TV all day; my Dad didn’t know what to do with her,” she said.
At the time, Snyder was working as an activities director for a local assisted living facility (Sunrise Health in Galloway) that was connected with a longterm care facility. She and her family agreed to move her mother to that facility, where Snyder could effectively watch over her. The new relationship that developed between Snyder and her mother turned out to be a blessing. “We really healed. We’d had conflicts before but through this we healed together and forgave each other.”
“I wish I could tell others how beautiful it is to take care of a person like my mom,” added Snyder, who is now a home health aide. “When I deal with people with dementia, I treat them with dignity and respect, which is how I treated my mom.” This gets a better response than talking down to them or responding to them with anxiety and fear, she stressed.
Snyder said this seeming tragedy ultimately brought her family together. “Our family is a lot closer as a result of dealing with my mom’s illness. You see how short life is and you don’t want to take it for granted.”
Yet the path is not always so smooth, said David Gruber of Egg Harbor Township, whose mother is in the Alzheimer’s unit at Seashore Gardens Living Center. “It sounds simple, where to send mom. It wasn’t!” said Gruber, who decided upon Seashore Gardens after doing extensive research and facility tours.
Seashore Gardens Alzheimer’s Comfort Care Unit is a secure unit that is specially designed to meet patient needs, said Alysia Price, administrator and director of social services at Seashore Gardens. Staff are specially trained to care for people with Alzheimer’s and dementia, it’s easy for patients to get around, and patients are offered programming that includes a lot of reminiscing and sensory stimulation through music and a sensory garden. “The garden evokes good memories and stimulates the senses, which is good for Alzheimer’s patients,” said Price.
For those struggling with the decision of whether long term care is appropriate for their loved one, Seashore Gardens offers Alzheimer’s outreach, where they do a home visit to evaluate what options might be best for that individual and their family, said Price. The evaluation is free.
Both Seashore Gardens and Beron-JOAS also offer monthly support groups for Alzheimer’s caregivers. (For upcoming dates and more information, call Seashore Gardens at 609-404- 4848 or Beron-JOAS at 609-345- 5555.)
Caregivers need to understand that they don’t have to deal with their situation alone, stressed Epstein. The holidays offer an ideal time to communicate this, perhaps through a “family intervention,” since out-of-town family and friends are all gathered together and can surround the caregiver and the loved one suffering from memory loss with love and support. What’s important is starting the conversation. “Even if you get resistance, it’s not a failure,” said Epstein. “You open the door a crack to let them know help is there.”