It happens almost routinely, the last appointment of the day on a Friday before a weekend or the afternoon prior to a holiday. After a busy day seeing many patients, my last patient has Alzheimer’s dementia and from casual observation in the lobby this patient really seems to need help. Yet over the course of the visit I realize it is not the patient that is troubled, rather the caregiver who is at her wit’s end. For me, there is nothing more heartbreaking than seeing an exhausted person who valiantly is trying to care for a loved one with a chronic health condition.
These appointments haunt me as it reminds me of the struggles of my family caring for my mother with Alzheimer’s disease, father with leukemia, father-in-law with Parkinson’s dementia, and the challenges that so many of us face as we deal with aging parents or a chronically ill family member. I try to remind each of these family caregivers that we are not alone. Almost 29 percent of the U.S. adult population—roughly 52 million people– provide care to someone who is ill, disabled or aged.
For Latinos where “la familia” is everything, this is a huge issue. According to a 2008 survey of Latino caregivers, a third of Latino households report having at least one family caregiver resulting in approximately 8.147 million Latino caregivers in the U.S.
Three quarters of these caregivers are women, with an average age of 43, caring for a loved one whose average age is 62. Latino family caregivers tend to be in more intensive caregiving situations providing on average 37 hours of care with a greater number of responsibilities that revolve around activities of daily living ( i.e. feeding, bathing etc.). Forty-three percent of Latino caregivers live with their loved ones — my mother and father lived with my sister.
With so many of us involved in caregiving and focusing our attention on our loved ones, it easy to forget about one’s own health. Evidence suggests that there are major physical consequences for those family caregivers who do not stop to consider their own well-being. The following are 9 important tips on what you need to consider when you are the caregiver for any condition from severe mental illness, dementia, a special needs child or anyone who is dependent on others for daily care.
- Set goals. Setting goals when you need to accomplish particularly huge tasks — such as selling a house or finding an assisted living facility — can be helpful and just might provide a way to lessen the feelings of being overwhelmed if you perceive a large undertaking as a series of small steps.
- Analyze, brainstorm and write out solutions to difficult home situations. Identify the problem, list out solutions, evaluate the results and then find resources. Consult a social worker or research on-line resources specific to the situation such as www.AARP.org, www.nami.org,, www.caregiver.org, to name a few.
- Communicate constructively, as caregiving scenarios can divide families. Try to find a way to not blow up at loved ones and respect the rights and feelings of others. Be clear and specific and always try to be a good listener rather than the talker.
- Ask for and accept help especially since guilt and other emotions often can consume a caregiver’s thoughts and prevent someone from asking for help. Resist asking the same person for help repeatedly— this can be a recipe for problems. At the same time, be prepared for hesitance or refusal.
- Find ways to better talk to your doctor. Prepare questions ahead of time. Talk to and find an ally in other members of your healthcare team such as the nurse or social worker. Make sure your appointment meets your needs, call ahead and take someone with you to make sure you understand what has been presented. Be assertive and open yet don’t bully your doctor.
- Remember to get sleep. Exhaustion is the enemy of caregiving. Finding someone who can help you just get that one night’s sleep may make a world of difference.
- Find ways to reduce personal stress. This is of course easier said than done but still essential. Learn how to recognize when you are reaching your limit of tolerance and you need to take a moment to refocus. Mindfulness exercises, meditation, and prayer can be helpful. Don’t forget about physical exercise as this is as important as eating.
- Try to avoid isolation. It is true that friends/relatives may not want to visit or you may feel isolated. Find ways to connect with others in the same situation via online or in-person support groups.
- If you are a caregiver for a child or a family member, try to remember the other family members. This will help relieve guilt and stress. Take a moment to celebrate other members of the family.
Just remember, if you do not take care of yourself, who is going to take care of your loved one?
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Dr. Joseph Sirven is a first-generation Cuban-American. He is Professor and Chairman of the Department of Neurology and was past Director of Education for Mayo Clinic Arizona. He is editor-in-chief of epilepsy.com and has served U.S. and global governmental agencies including the Institute of Medicine, NASA, FAA, NIH and CDC.