QUESTION: Any ideas for caregiver support for patient that had HSV1 (Herpes Simplex Virus-Encephalitus)? My husband was diagnosed with this very rare and serious virus four months ago. The virus is now gone, but the symptoms of severe memory loss and confusion is overwhelming. This has taken quite a toll on me and I am totally exhausted. I do have professional respite help in two to three times per week for 4 hours, but that just started last week. I am looking into a daycare facility. Unfortunately, we do not have much family or close friends nearby that can really help. He is going to out-patient therapy once or twice a week.–Christine
DEAR CHRISTINE: With respite care in place, you should begin to experience some relief. There will be many ways to fill that “free” time, but try to reserve at least an hour for self-care practices. Completely remove yourself from the situation and enjoy something that relaxes and enriches you such as a massage, a quiet walk in nature, a trip to the gym, or maybe having coffee with a dear friend. Healthy caregiving results when a caregiver understands the importance of balancing depletion with “filling up” practices. Caregiving is highly emotional work, so don’t forget to replenish your spiritual side also with meditation, prayer or just being present in the moment with no distractions. The good news: There are organizations in your community filled with dedicated people who want to help lighten your load. Begin by making a list of your husband’s needs. Prioritize them in order of importance and timing—some will be daily; others weekly or monthly. In order to find the personalized help you need, start with your physician’s office, family and friends. Often word-of-mouth recommendations are the best. You will find excellent resources on the Internet such as The National Council on Aging (www.ncoa.org), National Family Caregivers Association (www.thefamilycaregiver.org), or a very comprehensive site: Strength for Caring: A Place for Caregivers (www.strengthforcaring.com), which is sponsored by the Johnson & Johnson Patient Assistance Foundation. Additionally, in a rare situation such as the one your husband has experienced, I believe it is imperative that you meet your husband where he is capable of responding. With his memory loss and confusion, you may be grieving the person he once was and this will also take a toll on your emotional and mental state. I once heard a physician in the field of Alzheimer’s research speak about our need to develop a “culture of caring” as opposed to a “culture of curing.” He told numerous stories about watching family members trying desperately to jog the memories of their loved ones suffering from Alzheimer’s disease, which, of course, is not possible. He offered that authentic, compassionate care is more about accepting another person where he or she is now as opposed to trying recreate who the person once was. I hope your husband’s prognosis for the future is positive. You have been through a very difficult time. As you move forward, take each step patiently and courageously knowing you are making a difference in your husband’s life. There is always hope for healing. Often in ways we never expected.
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Patricia Smith is a certified Compassion Fatigue Specialist with 20 years of training experience. As founder of the Compassion Fatigue Awareness Project© (www.compassionfatigue.org), the outreach division of Healthy Caregiving, LLC, she writes, speaks and facilities workshops nationwide in service of those who care for others. She has authored several books including To Weep for a Stranger: Compassion Fatigue in Caregiving, which is available at www.healthycaregiving.com or Amazon.com.