HANFORD – If a loved one is starting to have serious memory loss, confusion, mood and behavior changes, or difficulty speaking, swallowing and walking, they may be developing dementia. How can they be evaluated? How can you minimize their anxiety, confusion and anger? If they’ve already been diagnosed and need in-home care, how do you pay for that? What are some local resources and who can you turn to for support?
Marie Espinola has answers when it comes to coping with dementia and will be leading two new local support groups in Kingsburg and Hanford.
Espinola is the director of the nonprofit Alzheimer’s Foundation of Central California’s and already leads 15 similar groups throughout the San Joaquin Valley.
“We put families in touch with resources, help guide them through payment methods and educate people about different forms of dementia,” she said of the different topics they discuss.
No appointment is needed and there is no fee to attend. The support groups will meet on the third Thursday of every month. The first meeting will be Jan. 17 from 10-11:30 a.m. in Hanford at 602 9 1/4 Avenue. She will also meet that same day at the Kingsburg Senior Center, 1450 Ellis St at 12:30 p.m.
Aside from the monthly support meetings, Espinola will also field phone calls and meet privately with families or couples if their schedule or caregiving responsibilities prevent them from attending the meetings.
“If the adult kids can only come home on a weekend, I’ll work with people’s schedules to help them figure out what to do. It’s not just an 8-to-5 service we provide.”
Espinola said she invites guest speakers to address specific topics at times. The meetings will typically include group input and attendees can share what they wish to about their own circumstances. Or, they can simply listen in.
“Sometimes the topic will just be an open discussion and people can bring to the table the issues they’re struggling with and we do some problem-solving around the table.”
Espinola said people may attend even if no one in their family has been diagnosed yet but simply to get information in advance about what resources are available locally. She also encourages friends and family of caregivers to attend so they won’t wind up being isolated as well.
“There’s stigma about their spouse having dementia, so they won’t take them out because they don’t want to be embarrassed or their loved one to be embarrassed. So the caregiver becomes more reclusive, too. They end up being shut off from their friends and social things. They need to realize they need to continue to do those things so they can be a good caregiver.”
Much of the meetings are about educating attendees what dementia and Alzheimer’s is, and is not, and the best ways to deal with it.
“One thing for care givers to understand is that a dementia patient cannot learn something new,” she said giving an example of someone who’s become unstable and needs to start using a walker.
“They’ll use the walker as long as somebody’s reminding them to use it. As far as it being a habit, they won’t do well with that.”
Also, caregivers need to know about what is, and is not covered, by such programs as Medicare and private insurance, she said.
“A lot of people call and say, ‘doesn’t Medicare covered assisted living?’ No, they only cover an acute-care hospital or if you’re in a skilled nursing for rehab. And that’s it. People think if they have Medicare and a secondary insurance plan that will cover it. But if Medicare denies it, your secondary isn’t going to pay for it either. It’s a lot of learning with not only the dementia but also understanding how to pay for their care.”
Since a dementia diagnosis will likely require important life decisions, Espinola encourages residents to plan ahead.
“I encourage people to not wait until they’re in a crisis to make a decision,” she said about medical care, legal matters and such decisions about whether driving should continue or not.
If a person has not been diagnosed with dementia, attendees can still learn what signs to look for in their loved ones. If the person is becoming more reclusive, blames others for misplaced items, becomes paranoid or stops doing things they’ve done for years, repeats themselves, forgets doctor’s appointments, forgets to pay bills, it may be time to see their doctor.
“If you’re seeing them do things that are totally different than the norm before and it becomes a problem, you need to know there are resources out there to help you.”
Espinola said caregivers also need to know they aren’t alone in their situation and that others understand their experience. Attendees often share their own coping methods, develop friendships and sometimes continue attending even after their loved one dies.
“I’ve been doing these support meetings for 20 years and numerous people say nobody out there understands what we’ve been through, except each other. The meetings just reinforce that they’re not alone. Just by sitting and talking with and listening to other people, they’ll realize they have the same problems. Or, they realize they’re not there yet but when they do get to that point, they remember those meetings and listened to other people that struggled.”
Some even wind up bringing other friends and relatives to the meetings who are new to situation, she said.
“There’s one man in Merced who’s been coming for 15 years now. He took care of his mom and she passed away. Now, he comes every month and brings people from the community. They feel more comfortable because he meets them there.”
Caregivers also need to remember to take care of their own health as well, she said, so they can continue providing care as long and as healthily as possible.
“If you’re a caregiver, you need as much assistance as you can get to continue to be a caregiver as long as possible, rather than cut yourself off from everything.”
Espinola encourages those who do attend to tell others what they’re learning, especially their friends or family who need help understanding how to react to their loved one’s changed behavior.
“They’d learn to let it roll off and not be offended. So if you’re a friend of a caregiver, step up to the plate and offer to go with them to learn about it. We’re all aging so we all need to go learn about it.”
Espinola will email or send letters out to those who sign up to find out upcoming meeting topics, meeting places and times for any who are interested.
Meetings are usually one hour or will continue until attendees’ questions are answered. Quail Park community liaison Kim Jensen helps facilitate these local meetings and helps residents find local resources as well, Espinola said.
“Kim’s my right-hand person in the South Valley. She’s in the community and works with all the different hospices, the in-home cares, the assisted livings and the smaller [care facilities]. She also works with the skilled nursing, so she’s very knowledgeable about providers in this area.”
Espinola asks that discussions are kept confidential so attendees can get real solutions for their needs.
“It’s very open door, so if somebody comes in and has to leave in an hour, they can take off and leave. Even though it’s very casual, the only guideline is that things that are discussed here are held confidential in our group. We need to respect each other that we can really talk about what’s going on brainstorm.”