In fact, in the Caribbean elder care homes have always been looked down upon and stigmatized as places for the poor. And, for those who have migrated to other parts of the world, they still hold fast to that principle. But, sometimes that custom unravels because of overwhelming pressures. In other words, ‘life happens’.
It has been three years since Amaali’s mom, Enett Moore, 79, was diagnosed with dementia and subsequently placed in a nursing home for patients with cognitive impairment based in South Florida. The decision had to be made as Amaali, Moore’s only daughter, lives in the UK while her two adult sons, one residing in Florida, seem to have placed full responsibility for their mother’s care in their sister’s lap. This has resulted in anger and fractured relationships between the siblings.
Interestingly, Lynn Friss Feinberg of the AARP Public Policy Institute writes in Volume 24, Issue 2 of the Public Policy & Aging Report that 66 percent of older people with disabilities who get long term care at home are cared for by family members who are either wives or adult daughters. And, it is mostly adult daughters who make the decisions for their elderly hospitalized parents.
Financially and emotionally stretched, Amaali has wholeheartedly taken on the responsibility, flying back and forth across continents, making weekly calls, and managing her mom’s affairs.
“The guilt is unbearable. This is not what we do with our parents, she shouldn’t be there. She worked so hard for so long, and we’ve never wanted for anything. But, I’m doing the best I can from here”, cried Amaali; she couldn’t hold back the tears.
The emotional turmoil is palpable as Amaali speaks about the conflict between her and her siblings who were brought up with strict values around honour and respect that defines most Jamaican homes. Her mother, a former nurse, worked in hospital settings until she was 73 caring for patients, many of them elderly. So, it’s extremely difficult to see her mom in this state.
Although under pressure, the tradition still holds. According to the U.S. Department of Health’s National Center for Health and Human Services (HHS) Statistics, non-Hispanic whites take up the lion’s share of long-term care services. Whites are highest in all sectors including residential care communities at 84.3 percent vs. 3.8 percent for Blacks, 2.5 percent Hispanic, and 9.3 percent Other. while in the nursing home sector White users number 76.1 percent vs. 14 percent for Blacks, 5.2 percent Hispanic, and 4.7 percent Other.
Figures for Caribbean-born long-term care residents are difficult to ascertain. However, based on the fact that the U.S. population is becoming more ethnically diverse, it is reasonable to assume that one would see an increasing number of Caribbean-Americans in long-term facilities. In fact, the biggest numbers would be in New York (28 percent of all Caribbean immigrants) and Florida (40 percent) where the Caribbean population is estimated to be the highest of all the states based on the U.S. Census Bureau.
Further, the Migration Policy Institute states that about four million immigrants from the Caribbean resided in the U.S. in 2014, with more than 90 percent coming from Cuba, the Dominican Republic, Jamaica, Haiti, and Trinidad and Tobago. Moore fits perfectly within these statistics.
Amaali decided to come to the United States, lived with her mother for a while, which helped maintain a more balanced environment. But, she had a life outside of the U.S. that called her back to home base regularly. She flew back and forth for a while, but the economics and the sheer physical energy it took to keep hopping from the UK to the America was just too much. She couldn’t do it alone.
Asked if her mom is happy with her new ‘home’ Amaali answered affirmatively.
“She has made friends and physically she is doing well. I’m also encouraged when I see and call her, that she knows who I am. So, the dementia has not progressed that much. She is being well cared for”.
The HHS report details that 15,600 nursing homes, and 30,200 assisted living and similar residential care communities provided long-term care services for patients/residents in 2014. And, although there is growing concern about the cost of long-term care at these facilities, the numbers are projected to rise. The HHS data shows that the number receiving home care is expected to increase from 15 million in 2000 to 27 million in 2050. This is based on the estimated growth of those over 65, expected to move from 40.2 million in 2010 to 88.5 million by 2050.
Looking back through time, Amaali says there were times when her mother’s behaviour caused questions about her mental stability. She was often irritable, asking the same questions over and over. But, dementia never came to mind.
A proud independent Jamaican woman, Moore continued to live on her own after the diagnosis. But Amaali knew she had to do something to protect her mother.
“On one of my trips to Florida, I thought I would hire a nurse or helper to live with and care for her. However, that didn’t work out. So, I got a friend to look in on her daily. Unfortunately that too did not work out as she was not as attentive as she should have been. In fact, my mother somehow wondered off one evening, which of course caused a panic. She was eventually found in the street with a broken shoulder and severely damaged rotator cuff which required surgery”.
That’s when Amaali made the painful decision to place her mother in a nursing facility.
Sonia, Diego, and Raul have had that conversation. Their mother, 81 year-old Francisca Hernandez is living with Alzheimer’s disease.
Based on the accompanying graph, this debilitating disease is among the highest of the services used in the nursing home sector (50.4 percent) compared to other long-term healthcare services, the HHS report pointed out.
“We’re talking about it now, not because it’s something we want to do, but because there will come a time when she is going to need care 24/7. And as it is now, we care for her almost around the clock. It would have to be the time when she doesn’t remember us, when every memory is gone. Only then”, Diego explained.
Originally from the Dominican Republic, Hernandez and her family later emigrated to Puerto Rico where they lived for a number years. Then she and three of her six children (Sonia, Diego, and Raul) settled in Miami, Florida.
The family noticed symptoms about seven years ago. At the first signs of dementia she lived alternately with Diego, Sonia, and Raul, but for the past several years has resided with Diego while Sonia and Raul take her on alternate weekends. Diego is also Francisca’s legal guardian.
“I started to notice little things like her having multiples of the same items in the house, or getting frustrated when trying to open the door to the house. There was also an incident when she put her hand in a hot oven to remove something and got badly burnt. So, that’s when I started to suspect something was wrong”, Sonia expressed.
“At the beginning of the onset, she would recognize what was happening because she would make comments like ‘I used to be able to do that before’. And there were times when she did apologize for behavior that was disruptive. But, now she is unable to recognize those moments”, Sonia added
But, going even further back explained Diego, his mother would sometimes accuse people in the house of stealing her money, her personal belongings, her bread. Plus, there were periods of depression and crying. So, in conversations with Sonia they speculated about the fact that it might be more than depression. They agreed to take her to a neurologist for testing.
Said Diego, “It was hard for us because some of the tests required that you have some level of schooling, and my mom only has up to a third grade level of understanding. So, it made some of the required testing very difficult and frustrating for her. We took her to several doctors in order to get a diagnosis that was as accurate as possible”.
To stem some of the memory loss and keep the brain active, Sonia, an artist herself, introduced her mom to painting and drawing. Some of her output reveals a complex mind filled with creativity. But, over the years, Francisca has lost interest.
“It’s very sad for me to watch her mental deterioration these past seven years because I remember a strong, independent woman who could do anything. But, she is still clinging to some things. She doesn’t want to be alone; she clings to us, me and my brothers, because the only thing she remembers is us”, Sonia added.
Indeed, caring for a loved one at home takes a tremendous toll, not just economically, but emotionally, psychologically, and physically as well.
Raul and his wife own and manage a successful business. However, because he has become his mother’s main caregiver, he has stepped back from the day-to-day concerns of the company, instead leaving his wife with a more active role.
“When I stopped working, I stopped producing. That means I am not able to take care of my responsibilities, including the responsibility of taking care of my mom”, said Diego, adding:
“It’s also put pressure on my marriage because I spend so much time with my mom, there are times when I don’t spend enough time with my wife”.
This, and other scenarios have led to tension among Francisca’s children. Diego noted that as his mother’s legal guardian he never made any decision concerning her health or affairs without consulting the others. He recounted, with palpable agitation, incidences involving his mother that created distrust, accusations, and scarred relationships among the siblings. Sonia steps in tearful, disturbed, and adamant about explaining her perspective on things.
“We have to be clear that everyone in this story has been hurt, it’s not just one person”.
However, it is apparent that even in the face of conflict, the family is still a unit, fighting together to care for Francisca. But, like so many families struggling to balance personal and professional lives in addition to caring for a dependent loved one, depression can become a factor.
“When my mom lived with Raul, I would also go to the house to help care for her, before and after work. It was very difficult for me because I was rushing back and forth, trying to maintain balance”, said Sonia. “I was actually caring for my mom full-time; it was overwhelming. Then she came to live with me. And what I was earning was not enough for rent, my automobile, food, and to take care of my mom. The result is I did not have a private life and I became exhausted and depressed because I couldn’t provide for myself or my mother”.
Indeed, the Migration Policy Institute addresses poverty among Caribbean immigrants. According to the data:
“Caribbean immigrants were more likely to be in poverty than the U.S. born. In 2014, 20 percent of Caribbean immigrants lived in poverty, compared to 15 percent of the U.S. born and 19 percent of the overall foreign born. Among all Caribbean immigrants, those from Jamaica and Trinidad and Tobago had higher median household incomes ($51,000 and $52,000, respectively) and lower poverty rates (13 percent and 15 percent, respectively), while Cuban immigrants ($36,000 and 22 percent in poverty) and Dominican immigrants ($34,000 and 26 percent) fared the worst”.
Advocating for better support for caregivers, Feinberg reports that: “A substantial and growing body of research, spanning over 35 years, shows that family caregiving can be stressful, burdensome, and costly. Yet family caregiving generally has been viewed as a private issue, largely overlooked in public policy”.
Now considered a public health concern, states Feinberg, family caregivers often report higher levels of stress and poorer health than the general population. The American Psychological Association corroborates this, reporting that 55 percent of caregivers describe being overwhelmed with the amount of care their family member needs.
As well, the Feinberg-authored research underscores the financial stress among this group. She calls attention to a MetLife Mature Market Institute report that calculated “income-related losses sustained by family caregivers age 50 and older who leave the workforce to care for a parent are $303,880, on average, in lost income and benefits over a caregiver's lifetime”.
The good thing is the Federal Commission on Long-Term Care, created to look at the issues surrounding family caregivers, came up with recommendations for Congress that includes adding the ‘voices’ of caregivers in crafting sensitive and responsible family-cantered policy as well as providing advice, training, counseling, and respite options to avoid burn-out.
Postscript: Since our first interview, Diego has decided to give up the full-time responsibility of caring for Francisca. The accompanying pressures have been too great, threatening to disrupt his family, business, and personal life. Sonia, whose professional circumstances has stabilized, will now become her mother’s full-time caregiver.
With kind support of a fellowship from the Gerontological Society of America, New America Media, and the Silver Century Foundation.