This story was produced with support from The Gerontological Society of America, The Journalists Network on Generations and The RRF Foundation for Aging.
Rosalva Reyes sees her children in South Florida many times a week, but sometimes she struggles to recognize them.
鈥淲hat are the names of your mother and father? Who are they?鈥� the 83-year-old asked her daughter, Vanessa, on one recent visit to her home in Palmetto Bay.
鈥淢y mom and my dad? My mom is Rosalva, my dad is Juan,鈥� Vanessa Reyes said patiently. 鈥淣ow do you remember that you鈥檙e my mom?鈥�
Alzheimer鈥檚 is the most common type of dementia. Over time, this brain disorder destroys memory and in most cases will eventually make it difficult to carry out simple tasks.
Fortunately, Rosalva still has full control of her body. She can shower on her own and even go to Zumba lessons regularly. She lives in her own home, in South Florida, which doctors say is the best option for people with Alzheimer鈥檚 who can do it.
She worked for many years as a federal immigration officer, and because of that, she receives a monthly pension. Alongside Social Security, it is enough to cover the monthly expenses needed for her to stay in the same home she鈥檚 lived in for decades.
But her son, Richard Cheney, who manages Rosalva's finances, is very aware that even that would not be even close to enough to cover the costs of an eventual move to a specialized care home. 鈥淚f she鈥檚 gonna go to a memory care place, that's going to wipe all of it out," he said.
Long-term memory care in Florida could cost more than $100,000 a year. On average, receiving residential Alzheimer's care averages in this state.
Because of these prices, Rosalva's children are considering facilities in Peru, where she grew up and has family, if the time comes that she will need professional care around the clock.
鈥淚t's a lot cheaper, it's like half the price, and the places are very nice,鈥� Richard said. 鈥淭op of the line in Peru.鈥�
The problem is, the siblings know they wouldn鈥檛 see her as much so the decision won鈥檛 come easily.
鈥淚f she goes over there, it鈥檚 like saying goodbye,鈥� said Vanessa. They know that time is slipping by and they may have to decide soon.
In the meantime, they depend on a network of paid help and volunteers. 鈥淲e got Josue, we got Maite, Vanessa, me, Jose, Nilda, Luisa, Marcia, and Marcia's sister once in a while,鈥� Richard said, listing how many people it takes to keep their mom living safely at home. 鈥淪o that's nine, 10 people right there.鈥�
They also pay for a security camera to monitor their mom who鈥檚 been waking up in the middle of the night. For primary caretakers who do live with their loved one 鈥� they might have other costs.
鈥淚f the caregiver is working, are they having to take time off of work? Are they having to reduce their hours? That's going to affect their finances as well,鈥� said Jennifer Braisted, the director of government affairs for the Alzheimer鈥檚 Association in Florida.
Push for increased funding
The Florida Legislature convenes again in Tallahassee starting on Jan. 9, and during this new session, Braisted and her colleagues plan to push state lawmakers to increase funding for Florida鈥檚 Alzheimer鈥檚 Disease Initiative. One of its roles is to help pay for respite care to give family members a break 鈥� though the program has a waitlist of about 17,000 people, Braisted said.
Women are often the caretakers and are more likely to develop Alzheimer鈥檚 than men. Advocates like Braisted say people need to talk about Alzheimer鈥檚 more so it doesn鈥檛 catch people by surprise.
The Alzheimer鈥檚 Association in Florida also wants the Legislature to set dollars aside for a statewide awareness campaign. About 585,000 Floridians, aged 65 and older, are living with Alzheimer's, with communities of color disproportionately impacted.
鈥淏lack Americans are twice as likely to develop Alzheimer's. Hispanic Americans are one and a half times more likely, so we want to be sure that there isn鈥檛 that stigma, they鈥檙e having these discussions with their doctors.鈥� Braisted said.
People who don鈥檛 have a pension like Rosalva or other money coming in regularly should plan ahead, said Cindy Hounsell, the president of the Women鈥檚 Institute for Secure Retirement.
Medicaid covers some costs for qualifying, very low-income Florida residents. Others may need loans, reverse mortgages, assets or savings.
鈥淲e have something called the caregiver hub on our website because a lot of times with caregiving, what happens is all of a sudden you're at work and somebody calls you and says, 鈥榊our mother just whatever,鈥� and you don鈥檛 know where to start,鈥� Hounsell said.
She urges people 鈥� especially women 鈥� to talk to their mothers and grandmothers and find out what savings they have. And make sure they are not putting themselves in danger by, for example, giving their credit card information to scammers.
鈥淚t's important for people to build their own capacity with what they know or ask other people, 鈥楬ey, did you do this?鈥�" Hounsell said. "People have to be the best that they can and they have to realize this is hard for everyone. But there's a lot of help.鈥�
For more on Alzheimer's Disease help, visit these resources:
- The Alzheimer鈥檚 Association,
- The Florida Alzheimer鈥檚 Disease Initiative for
- of the U.S. Administration on Aging
- from the Women鈥檚 Institute for a Secure Retirement
- from the USF Health Byrd Alzheimer鈥檚 Center and Research Institute at the University of South Florida in Tampa
- State Health Insurance Assistance Program for
