My latest interview is with Sandra Gonzalez, Family Care Consultant, Latino Outreach Specialist—Alzheimer’s Association, Desert Southwest Chapter. Sandra was actually the first person I talked to about my mom’s condition. You see, besides coping with her diagnosis, my mom comes from a very large family in Ecuador and sometimes family dynamics in Hispanic homes can play out differently than in non-Hispanic homes. Hispanics tend to be incredibly family-oriented and may not always be open to seeking outside help, instead expecting the daughter to play the role of caregiver. Although this isn’t the rule, and is not the case with my own family (although, yes, some members of my family wanted me to move to Phoenix to be closer to my mom, they did not expect me to play full-time caregiver—or at least no one said so to my face; but I should say that my grandma in Minnesota—my non-Hispanic dad’s mom—said the same thing except in a high-pitched Minnesota accent, dontchya know, so, ya, go figure), I wanted to touch on this subject because it’s an incredibly complex subject wrapped in layers of raw emotion—love, guilt, grief, anger, sympathy, sadness, compassion, and resentment to name a few.
Thank you Sandra for your gracious time and constant support.
SANDRA, WHY DID YOU GET INVOLVED WITH THE ALZHEIMER’S ASSOCIATION?
Although I have two relatives who have been diagnosed with two different types of dementia: Alzheimer’s disease (AD) and AIDS Dementia Complex (ADC), I was drawn to my current position for the opportunity to work with the elderly population. Serving as an educator who increases the awareness of these diseases and a provider of on-going support within the Hispanic community was also a tremendous draw for me. I have a niece with Down’s syndrome. She has about an 80% chance of being diagnosed with AD by the time she reaches 50 years of age. Needless to say, I devour as much information as I can, so I can share it with the families I serve and with my loved ones.
YOU DEAL A LOT WITH LATINOS WHO ARE COPING WITH ALZHEIMER’S. DO YOU THINK LATINOS DEAL WITH THIS DISEASE DIFFERENTLY BECAUSE LATINOS TEND TO BE VERY ROOTED IN FAMILY?
Yes, I believe that Latinos deal with this disease differently than the non-Hispanic community in general. There are several reasons for this. Cultural changes occur based on the level of acculturation. However, some traits seem to remain firm, regardless of how long someone has resided in the states and what their level of acculturation is. Latinos are very rooted in family. The family’s needs as a group are more important than an individual‘s needs. Emphasis is placed on personal relationships. Trust and respect are key elements within the family. Until an outsider has developed a true connection with the family to the point where he/she can be trusted, the outsider’s attempts to educate and support may not be accepted or integrated within the family. Great value is often placed in closeness and togetherness, regardless of the family’s dysfunction. Problems are kept within the family without outside intervention. Studies continue to indicate that Hispanics receive medical care for complaints related to dementia much later rather than early in the disease process. Part of this may be based on strong belief in prayer and destiny. The use of herbal and folk remedies is commonplace. Several families I work with use these remedies to supplement their medical regimens. Faith in God and rituals may support a passive role, rather than an aggressive approach to dealing with the disease. Pain and sickness may be seen as God’s punishment for past sins and so a person may decline pain medication in order to suffer and pay for his/her sins. Some families have expressed great frustration with this behavior. On the one hand, they want to respect their loved one’s wishes and beliefs and on the other hand, they want medical treatment that may help. There is also the stigma of mental health. Mental health is downplayed or not addressed. It stays within the family and is not shared with outsiders. It is also viewed as punishment from God or a curse. Alzheimer’s Disease may be viewed as mental illness or as the normal aging process. Most afflicted family members will tend to depend on the family to make the decisions and assume the responsibility of care. For many, doctors are revered in high esteem and unquestionable trust is placed on them. Although, counsel is easily accepted from the doctor and the religious leader in the community, the family member’s status is usually unsurpassed.
WHAT ARE THE EFFECTS ON YOUNGER CAREGIVERS, ESPECIALLY ON THE DAUGHTER?
Traditionally, the assistance by the children is expected and does not diminish feelings of self-worth. The daughters, especially, provide care and assistance to the elders. There is usually a large network of kin. Numbers for placement outside of the home are low due to the caregiver role responsibility of the female. The role itself is not viewed as one of a caregiver. Instead, it is viewed as the role of a daughter. This differing view of the role of caregiver can make it challenging for the female family member to accept help that is offered to “caregivers.” I’ve witnessed much inner struggle for some adult daughters caring for their parents with AD. The conflict seems to be impacted by the daughter’s level of acculturation. Acculturation includes changes in education level, socioeconomic status, beliefs, customs, mores and other changes in one’s way of life. For someone who is highly acculturated, the assumed role of caregiver by virtue of one’s gender, may diminish feelings of self-worth. Although, the degree of responsibility placed on the daughter may seem unfair and excessive, it is more likely that the resources at her disposal would be utilized. She would be open to venturing out of the home for assistance, education, resources and support. She may be more inclined to seek guidance and support from support groups, which are a foreign concept to less acculturated Hispanics.
MY SENSE IS THAT LATINOS TEND TO BELIEVE THAT FAMILY SHOULD CARE FOR THE AILING INDIVIDUAL, IF THIS IS SO, HOW CAN ONE TALK TO OTHER FAMILY MEMBERS IF MORE OUTSIDE HELP IS NEEDED?
Due to the fact that Latinos believe that the family should care for the afflicted individual, approaching multiple family members for help is critical. Our personal needs, emotions, moods, and attitudes play a big role in how well we listen and how clearly we express ourselves. Preparing for meeting with relatives to solicit support and assistance may be more important than you might imagine. I suggest the following considerations: 1) Get in touch with your true feelings, thoughts and beliefs as they pertain to all aspects of caregiving. 2) Be ready to express yourself as clearly as possible, without any assumption that the other persons have any understanding of what you do, need to do, struggle with, etc. 3) Use only “I” statements and be very careful to avoid any “you” statements. 4) Avoid any inference to blame, victimization, criticism, or anger. 5) Clearly describe the problem. 6) Clearly express what you feel. 7) Then what needs to happen in order to provide the best care for your loved one, reminding them that you all want what’s best.
Close with the consequences of what may happen if your loved one’s behavior continues and you’re unable to get their physical and emotional support. It’s a matter of setting the atmosphere so that the family can really hear you and become engaged in the conversation, which will lead to the cooperation you seek. Often, this is no easy task. But often, it is a challenge worth taking.
For practical matters such as who can do what, try to allow the family the opportunity to volunteer for some of the tasks. Emphasize people’s strengths and suggest that they’d be the best one to do the particular task. Rotating assignments is important in order to prevent burn-out. If, people do not cooperate, then set a time limit for plan B. If plan B involves placement and the relatives oppose this, they need to hear that this could be prevented only if they participate in the care as discussed. Some families will be opposed to any idea or action taken by the primary caregiver. It’s best to offset criticism and judgment by not reacting and instead, reverting to “I” messages.
Some examples are: I believe I am doing the best I can…… I feel saddened by what I just heard……. I’m asking for help….. I love my mother very much…. Keep it positive. If you feel yourself getting emotional to the point where you will not be able to express yourself clearly and/or without negativity, then it’s time to end the meeting. Sometimes, it could help to invite someone from a supportive organization to help mediate the family meeting.
IF YOU HAD TO GIVE SOMEONE A “TO DO” LIST AFTER LEARNING OF A PARENT’S DIAGNOSIS, WHAT WOULD BE YOUR TOP 3 THINGS TO GET DONE?
This is an easy one. The top three initial steps I recommend can be done simultaneously.
a) Obtain all necessary Power of Attorneys
b) Contact the Alzheimer’s Association in order to educate one’s self about the disease, available community resources and supports
c) Develop a care plan for your loved one, with the assistance of a Family Care Consultant, who can provide on-going support
DEPRESSION IS SOMETHING I NOTICE MANY CAREGIVERS OF ALL AGES SUFFER FROM; HOW CAN ONE STEM THE EFFECTS OF DEPRESSION?
Depression rates are highest among women, older people, people with chronic conditions and caregivers. It is treatable. The goal in treating depression is to address it as quickly as possible and keep it from becoming severe or chronic. Some of the standard treatments include various kinds of talk therapy, medication, and learning depression management skills. There are also alternative treatments, which may help address this on an emotional and spiritual level as well. Best results can be obtained when a combination of interventions are used. The most important message is, SEEK HELP. There are many reasons why one may not seek help. Denial can be a powerful coping mechanism, albeit it an ineffective one. Maintaining a strong ally or support network with someone who one can fully trust, is essential to stemming the effects of depression.