The tradition of keeping everything in the family is an amiable labor of love, but it is making our Spanish speaking caregivers In America ill. Familism is affecting our Latinx caregiver’s mental and physical health negatively. “ Familism refers to the value of the family as an institution, the ideal of interdependence in family relationships, and the priority placed on reliance on family members rather than on more impersonal institutions for instrumental, emotional, and material support” (Marin & Van Oss Marin, 1991)..
In my family I have seen how my aunts’ physical health was affected by the Familism ideology. They took care of my grandmother with Dementia by themselves.
My grandmother had a CNA, but when the CNA came I witnessed how they didn’t let her do anything for my grandmother. My aunts were exhausted and in constant turmoil by not accepting the help that was available to them. They took care of her needs: bathing, feeding, and lifting. They still have back problems and other health problems from that time. They missed their own doctor appointments and neglected their health.
The research is clear ”Caregivers are hidden patients themselves, with serious adverse physical and mental health consequences from their physically and emotionally demanding work as caregivers and reduced attention to their own health and health care” (RG, H., Reinhard, S. C., Given, B., Petlick, N. H., & Bemis, A. (2008) ch 14.) My grandmother never wanted strangers taking care of her and they wanted to grant her wish.
According to a recent report from the National Hispanic Council on Aging (NHCOA) “Caregiving can take a significant toll on a person, and compared to non caregivers, family caregivers of older adults are more likely to experience emotional distress, depression, anxiety, and/or social isolation” This isolation prohibits Spanish speaking caregivers to gain the education and support from others who are going through the same situation. In my aunts I saw anxiety, depression, and insomnia. “Hispanic caregivers are more vulnerable to suffer from financial strain and emotional stress as a consequence of the high number of hours spent providing caregiving support” (pdf)
This often happens too much in our families because it worked in the countries they grew up in but in America it’s different. “45% of Hispanics experience higher burdens from taking care of an elder or impaired family member, spending on average 32 hours per week compared to 33% of whites that spend 20 hours per week” Latino families fear that their friends and neighbors will look down on them if they let “others” assist in the care of their aging loved one.
In the United States Latino families work as opposed to the countries they came from where the majority of women stay home full time. These differences make caregiving by the immediate family in America so much more taxing and nearly impossible. In Dominican Republic for example there aren’t a lot of jobs so the males of the family get the job. The women rise early in the morning to walk to the markets because the food is brought fresh every morning. The neighbors are like family and pitch in to help with caregiving or errands if needed because your abuela is everyone’s abuela. Life is slower, there is less pressure so caregiver depression is lower. There is a lot of exercise like walking and dancing. Lots of socializing like sitting in the rocking chair every afternoon while music is playing and friends and family gather.
When the time came for my sisters and I to care for our mother with Dementia we choose to do things differently. We saw the toll that caring for my grandmother took on my aunts. Contrary to my aunts, we did not believe in the Familism concept, we trusted that with the right supervision outside institutions were available to help.
We knew outside help was what would keep our mother and us healthy. Did we get slack from our aunts… oh yes but we did what we had to do. We accepted the CNA’s help to bathe and feed her. She had a great CNA who became like family, my mother was fond of her. This was a relief because my mother didn’t like any of the previous CNAs. She helped with bathing, cooking, feeding, walks, laundry, food shopping, and companionship when we were not there. When we thought we were never going to find the right fit, she came. Yes, my aunts would come at first and “help the CNA take care of my mom” because they did not trust anyone other than family. After a while they saw she was in good hands. They really liked the CNA and they backed off.
We had a Nurse Case Manager that helped with coordination, this helped us to not have to worry about not having what we needed. She would order the Medical Equipment and deal with the insurance company. We had my mother’s medication mailed to the house, even though this may seem as a small thing it took stress off me. I didn’t have to run after work exhausted and stand in a long line to pick up her medication. I don’t have to worry about her running out of vital medication she needed to stay calm and not have hallucinations. For me this was important.
Yes, caregiving was hard but with the help we received we were able to enjoy our final time with our parents. We did not have depression, our anxiety which runs in the family was controlled, and we held a united front. We took time to go to our medical appointments and for self care. Without outside help we wouldn’t have been much help to anyone. This message needs to get out to our communities, let’s get our Latinx caregivers to understand that their mental and physical health will continue to decline without outside support.
Let’s remind them that it is ok to seek help.
I am a college student at College Unbound studying Leadership and Change, I am very interested in the issues affecting Latinx Caregivers. One of the issues I am passionate about is lack of information and resources in Spanish for our caregivers that are caring for their loved ones with health issues. I was a caregiver for my parents, and I know what a toll it can be on your mental and physical health. I am passionate about educating caregivers to practice self care. Currently, I am Care Coordinator for elderly and disabled adults, I also work closely with their caregivers.
Really great article and important message! Thank you!
I really enjoyed this article. I see this same kind of familism is my Portuguese family. We are so closely knit together that allowing other care to come in is a leap of trust, which is fair. Sadly, in my work, I see too many elderly individuals receiving poor care. As caregivers, we can’t to it ALL and need outside help in order to live healthy lives ourselves, but still need to continue to advocate for the BEST care for our loved ones. I shared this article with the hope that other families will read it and apply it to their situations. Thank you for sharing!
Very thoughtful and well done article. As an RN who has done home care for 40 years, I see this phenomenon happening every day. It isn’t confined to just the Laitinx community, but appears to be more prevalent there and in many of the Asian communities as well. Here in the US, with all the running around and spreading out of families, it is easier, some believe, to place a loved one in a facility than keep them at home. Our medical system needs to reverse that trend, and I do see more of a push by hospital discharge planners to send people home, but a major problem is the lack of home care workers in all disciplines. CNA’s and HHA’s have the most challenging and difficult jobs out there, yet they are overwhelmingly underpaid and underappreciated by the medical community. The families and the patients love them and will put up with less services than they are authorized for just to keep the staff they have. An RN in home care is also way underpaid on average, but most of us like the independence and the increased patient contact. Unfortunately, agencies have increased the number of visits necessary to be a full-time worker, which leads to less patient contact, more documentation and travel time. Many of my colleagues are up till 11 or 12 at night, finishing the documentation they can’t finish on the road and still maintain the par levels required. Therapists can make way more money staying in a clinic or hospital situation and not do any travel at all. We must reverse the in-patient trend, as the vast majority of people would rather be at home than anywhere else as they age and/or recover. It certainly is less expensive for the health care system, insurance companies and families to care for a loved one at home. The current trend to decrease alllowables along with changes to Social Security, Medicare and Medicaid are causing patient costs to increase and I see many patients that go without food, clothing and any social interactions to pay for their medications and deductibles. Some walk the fine line and get medications some months and food other months. lets all get out there and contact the State and Federal representatives in our districts and advocate for better funding for home care and encourage our young people to look at careers in public health service and home care. A degree in underwater basket weaving doesn’t cut it in today’s world. Huge kudos to those who care for a loved one at home, you are the best and will be blessed forever.