By Deborah Jeanne Sergeant
Sooner or later people with Alzheimer’s or another dementia will require support to live at home safely. People with this kind of condition can also consider staying in a memory care unit such as the ones at orchardparkatsouthfork.com/memory-care-2/ to meet their special needs.
“I don’t think most people know what they’re getting into,” said Mary Koenig, administrator at The Heritage Memory Life Community. “They start out at home. It becomes a 24/7 job. That’s what people don’t realize. You can’t leave that person alone at all.”
She added that 60% of those diagnosed with Alzheimer’s will eventually wander. But many people in the early stages will need help with activities of daily living. Most have difficulty in communicating and challenging behaviors such as paranoia, aggression and hallucinations.
“You have to dementia-proof your home,” Koenig said. “There are a lot of supports available in the community. What we usually see is people start at home, maybe use adult daycare or bring in companion services. Ultimately, they seek assisted living or memory care when it becomes too much.”
Koenig lost her father to Alzheimer’s two years ago. He enjoyed playing and watching golf. Eventually he could no longer follow what was happening to enjoy viewing golf.
“It was very difficult spending time with him as he couldn’t really communicate and make much sense,” Koenig said. “It can be very trying. We’d listen to music or I’d read him a story but it’s hard because people don’t always like to do what they did before.”
The services at an adult daycare program can offer a regular place for people with dementia to enjoy engaging activities, socialize and get out of the house. Companion services at home can also bring some of these benefits and can include help with personal care.
“It’s important for someone with dementia to feel they have a purpose and are contributing in some way,” Koenig said. “It can be hard to find activities. When you can do so, it’s so helpful, even if it’s, ‘Help me with the green beans’ or ‘Set the table’ or ‘Fold towels.’ Everyone wants to feel like they’re making a difference. That urge never ends.”
Caregivers need breaks, both regularly for short periods and occasionally longer periods.
“There are places like Heritage for when they need respite so they can go on vacation or have a break,” Koenig said. “It’s a temporary stay. It helps keep their loved one at home if they can take a break.”
Some people with dementia can struggle sleeping at night, which can be difficult for caregivers.
Alzheimer’s Association provides a 24/7 helpline, 800-272-3900, online information, support groups and educational programming.
“Every day can be a different day for caregivers,” said Cathy James, CEO of the Alzheimer’s Association Central New York Chapter in Syracuse. “For many caregivers, that can be a challenge. ‘This strategy worked well yesterday; why isn’t it working for me today?’ You can do all the same things in the same way and it can be the perspective and how the patient is perceiving their environment that day.”
The organization’s resources can help caregivers find local resources, find answers to their challenges, connect with caregiver peers online or inperson for one-on-one or in support groups. Many caregivers become so busy with providing care that other relationships take a backseat. Some friends and family members become distant because they do not know how to respond to the caregiver’s role.
“If you know someone who’s caregiving for a family member with Alzheimer’s, one of the best things is, ‘I’m going to the store; could I pick up some things?’ or ‘Could I stay with so-and-so if you want to get out?’ rather than, ‘Call me if you need help,’” James said. “The person isn’t likely to reach out.”
She added that just a couple hours’ assistance or a few small errands can make a big difference.
“A lot of times, we don’t focus on the caregiver but the person in need of assistance,” said Andrea MacDonald, registered nurse, clinical operations manager for Nascentia Health, which operates in Syracuse, Rome, Rochester, Buffalo and Albany. “Caregivers seldom call until they reach that crisis or point that they can’t do it any longer or their health is suffering.”
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, so they can run errands, engage in personal care or take a vacation. 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.
She also encourages families to enlist friends, neighbors and their church’s social circle who may want to help. MacDonald recommends the Nascentia booklet available at https://nascentiahealth.org (type “caregiver-booklet” in the search menu) for tips on preventing burnout.
“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 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. Sometimes, they really just don’t know where to turn and on occasion, the caregiver breaks down.”