Easing the journey

We all know – whether we have seen it firsthand or not – that dementia causes people to do things less well, less gracefully. That it may lead to frustration and sometimes to anger.

But do caregivers – even the most loving and well-intentioned – really know what their parents or spouses are going through? How it really feels to lose control over seemingly simple tasks?

A new program at the Kaplen JCC on the Palisades in Tenafly will use innovative means to show caregivers what it means to face these obstacles.

Among other things, the family caregiver training program – coordinated by Judi Nahary, the JCC director of senior adult services, and Marlene Ceragno, its senior activity center recreational therapist and caregiver support coordinator – will offer a series of simulation exercises.

For example, Ms. Ceragno said, “We’ll put something in [the caregivers’] shoes to make it harder to walk and to make them aware of how frustrating it is, so they will look at it with more compassion.”

When someone has dementia, he or she can’t verbalize all their new ailments, she said. Maybe the caregiver wants to leave the house quickly, but the person with dementia can’t remember how to button a shirt. At the training program, participants will be asked to perform tactile functions with gloves on, to wear blinders that impair vision, and to put on earbuds that feed continuous noise into their ears.

These are not frivolous exercises.

Education is key, Ms. Nahary said, pointing out that experts will be on hand at all four Tuesday sessions to talk about the implications of dementia, both behavioral and medical.

“A urinary tract infection may show up in a dementia patient as loss of memory or a volatile personality change,” she said. “They don’t interpret pain the same way. A UTI can turn septic instantly, and you have to get them tested immediately. We’ll arm caregivers with this type of information.”

If they know the signs of certain conditions, she said, caregivers can take the appropriate action. In this case that would mean getting antibiotics.

The difficulty of providing 24/7 care for a parent or spouse cannot be minimized, Ms. Nahary said, noting issues of hygiene, transportation, recalcitrant behavior, and the need to make the house safe. Caregivers also need specific information – passwords for important accounts, phone numbers, medications.

“They don’t think to get that information in the beginning,” Ms. Ceragno said. She knows about it personally as well as professionally – she was a primary caregiver for an elderly aunt. “To make their lives easier, we will create a plan together.

“They’ll leave here with knowledge of the disease, how to deal with the behavior, and how to move forward.

“They’ll also leave with a workbook. We’ll ask them to write down all the medications, where the will is, where important things are. They’ll have their own personal book along with information about resources in the community.”

They’ll also be able to share their experiences with each other, Ms. Nahary said.

“When caregivers are together, they give each other a lot of input. That alone is huge, to have someone validate your feelings. It’s therapeutic and cathartic.”

The JCC has been running an Alzheimer’s caregiver support group for several years, holding three meetings a month, two during the day and one in the evening. Participants include both men and women, children and spouses. Attendees at the day groups generally are between the ages of 60 and 80. In the evening, most of the caregivers, there for their parents, are between 40 and 60.

Most care for loved ones with dementia or Alzheimer’s, “but we have gotten others, general caregivers, just looking for someone to talk to,” Ms. Ceragno said.

Ms. Nahary said she often hears attendees talk about “their guilt for feeling the way they do – becoming impatient, frustrated, even yelling sometimes. At first that’s what we hear; then it turns into a lot of regret that this is their life. They had saved up for retirement, hoping to travel. Now all their money will go toward caring for this person.”

Also, Ms. Ceragno said, children are strongly affected by the “role reversal. That’s huge.

“All of a sudden they’re not asking what to do, but telling.”

While the support group will continue – both women pointed out that the number of participants is growing – Ms. Nahary said that one of the things she wants to accomplish is to increase offerings for caregivers.

“Marlene had tremendous resources,” she said. “She jumped on the idea. So we sat down and talked about what we thought was missing. So much information and resources exist that they don’t know about, that could make their life easier.

“We’re not reaching everyone out there,” she added. “We want to inform them of medical pieces that could be so helpful.”

The training program was designed with this in mind – and the planners have given careful thought to overcoming obstacles.

“This is our test run,” Ms. Nahary said. “We want to offer it several times a year.

“The caregiving population is growing. We don’t want anyone to be concerned about cost. If they can’t afford the fee, we can work with them.”

Nor do they have to worry about leaving their loved ones at home unattended, she said, noting that the latter can be incorporated into adult day care programs at the JCC during training sessions.

Sessions will be run by experts, including a medical doctor, nurse, eldercare law practitioner, and dementia care specialist.

“We are going to try to arm our caregivers with tools that will make their journey a bit easier,” Ms. Ceragno said.