Why the Hispanic community needs us

I come from a very large and close-knit Hispanic family and I was raised to believe that family is above all else. That is why one Wednesday afternoon my life changed completely when my grandmother, my Ada, was told at a routine medical appointment that she had cancer and that she had three weeks to live. This was a complete shock to our entire family because up to that point, my grandmother worked, drove, was healthy, and had no history of cancer. There are no words to describe what I felt. All I can say is that I cried for a couple of seconds, as the words “cancer” and “three weeks tops” repeatedly pierced my heart. Suddenly the tears stopped. It was not time to cry, it was time to take action; do everything possible to make her feel comfortable and to provide for my family. Knowing the uphill road ahead, I wanted to make sure his affairs were in order.

To my surprise and chagrin, my grandmother did not have a power of attorney, a health care surrogate, a will, or any other estate planning documents. She knew that she had a very limited time to draft these documents and execute them before she lost her ability, and of course no one knows exactly when that time will be. During this time when all we wanted to do was try to give her a little hope, show her how much we loved her, and make her smile, I had to ask her, among other devastating questions, “who do you want to make the decisions?” on your behalf when you are incapacitated? Who do you want to leave your goods to? If you are dying, do you want to be kept alive by artificial means? Those are not the questions a granddaughter wants to ask her grandmother as she lies on her deathbed and those should not be the last moments or memories that families experience with their loved one. My grandmother’s last trip began that Wednesday and ended exactly 21 days later, with her family by her side.

My family’s story is just one among millions. Hispanics, in general, have a great sense of family responsibility, especially towards their older loved ones. Women, in particular, feel that caring for an elderly parent is not only their obligation, but also her privilege: it is a matter of honor and duty. Because we view the caregiver role as intrinsic to a family, we tend to accept the enormous stress, physical toll, and financial expense that comes with being a caregiver as a normal part of the aging process. As a result, many Hispanics feel immense guilt and shame when caring for a loved one becomes too much for them.

This is particularly true for caregivers of loved ones with dementia. As dementia progresses and caring for a loved one becomes increasingly difficult, Hispanics still tend to view related stress as a normal part of aging, unrelated to illness. As a result, Hispanics may not begin seeking help until they are completely overwhelmed or financially depleted. Therefore, they may not consider pre-planning until they are in crisis mode.

I often wonder what would have happened if things had been different in the case of my Ada. If she had lived longer with this disease, how would her children have paid for a 24-hour aide or a nursing home? Nursing homes in South Florida average $7,000.00 per month. Twenty-four-hour home care is also prohibitively expensive, roughly $5 to $10,000 per month. They hadn’t planned for any of these possibilities and didn’t know all of their options.

Nursing homes in my family, like many other Hispanic families, are a taboo subject. We always say “I will never put my parents in a nursing home.” However, like most second-generation Americans, most Hispanic families are two-income households, with no one staying at home. The concept of extended families living in close proximity is also not as prevalent as it once was, with the prevalence of adult children moving to other states, away from their parents. Therefore, many families no longer have the option of staying home to care for an elderly relative. Even if one of the family members decides to stay home and be the caregiver, it will most likely reach a point where, as lay people, they are unable to provide the appropriate level of care that our elderly loved ones require. For example, after only two weeks, we could no longer physically care for my Ada without professional help.

There is a great need for education, particularly among minorities, regarding the needs of our aging population. Many of the Hispanic elderly living today are first-generation immigrants and are unaware of the public benefits that exist for long-term care for the elderly. For example, according to the Alzheimer’s Association’s 2010 Alzheimer’s Disease Facts and Figures publication, in 2010, Whites make up about 80% of the U.S. population age 65 and older, African Americans make up about 9% and Hispanics make up about 7%. In 2050, however, Whites are expected to make up a smaller proportion of the elderly population at 59%, African Americans will make up a larger proportion at 12%, and Hispanics will make up a much larger proportion at 20% of the population. older population. .

For first-generation immigrants, the notion of quality long-term care for the poor, or even middle-class families, is fanciful. They only know about long-term care programs in their home country, where the quality of care you receive usually depends on your economic class. This preconceived notion is also part of the reason many Hispanic families are the caregivers for their older loved ones: They don’t want their parents or grandparents to be in substandard facilities where they don’t receive adequate care.

In addition, language barriers, mistrust of strangers, less access to health insurance, and other socioeconomic factors contribute to Hispanic families missing out on benefits and services that can be of great help to caregivers and their families. loved ones. However, the main problem is the lack of information and education about the programs, public benefits and services in our country that are available to seniors and their families, regardless of their economic status.

Second-generation children are less tied to the “old country,” but sadly still unaware of the need to plan or the public benefits available. It is imperative that each person have a properly drafted and up-to-date advance directive, as well as a long-term care plan.

I thank God that my Ada’s ordeal was over in just 21 days because the last thing she wanted was to be confined to a bed, without the ability to live life on her own terms. Like many others, our family was not prepared, even though we have a large and strong support system. During those 21 days, there were at least 20 family members in my Ada’s house, cooking, cleaning, and taking care of her. Those twenty-one days have marked me forever.

Losing a loved one is never easy, but if families have a long-term care plan, perhaps their “21” can focus entirely on their loved one and not on legal and financial matters. The Hispanic population desperately needs the services and education we have to offer.