A Light has Dimmed at Our House

My husband, Andy, has long been the bright, shining light of leadership and social activism in our community. From being the first Hispanic student body high school president in Salt Lake City, proudly serving in the U.S. Army intelligence Services in the Vietnam Era, closing the State Industrial School that had an infamous reputation of over-incarceration of Hispanic youth to naming the light rail Wasatch Front transit system, “TRAX”, he has made many positive contributions to our community. He courageously continued his civil rights and anti-war activism as director of Utah’s Community Action Program, defying then President Nixon’s threat to stop his agency’s work by impounding the organization’s federal funding. Doing the right thing and standing up for the underdog has been his mantra and guiding light. He has also been a devoted husband and father. But now this bright light in our house and community is dimming. My husband has been recently diagnosed with dementia and is suffering from a host of medical problems.

There are two things I have learned about dementia and caring for a loved one with this disease. First, ensure all medical and surgical team members are aware your loved one has dementia. Second, as a caregiver, practice self-care and ask for help; caregivers are the glue that holds the family together.

In May, my husband had a heart attack and was hospitalized to have two stents placed in his blocked coronary arteries. I emphatically and repeatedly told the medical team of his past adverse reactions to sedation and that he has dementia. Unfortunately, my words of caution were not heeded and he experienced an acute case of post-procedure delirium. To complicate matters, his delirium was further exacerbated by an inappropriate dose of an anti-anxiety agent which had a paradoxical effect on his agitated and confused condition. Andy eventually ended up in four-point restraints for 24 hours.

According to the American College of Surgeons, “Optimal Perioperative Management of the Geriatric Patient: Best Practice Guidelines from the American Geriatrics Society (AGS)”, delirium is perhaps the most significant age-related postoperative complication. AGS further recommends health care professionals caring for geriatric surgical patients should perform an assessment of delirium during the pre-operative period to screen for these risk factors: age > 65 years, chronic cognitive decline or dementia, poor hearing or vision, severe illness, and presence of infection. My husband had all but one of these risk factors, yet a screening that could have prevented his adverse outcome was not performed. As our population ages, screening for post-operative delirium should be as routine as screening for diabetes, hypertension and depression. HealthInsight is currently working on a project to build primary care provider skills in assessing cognitive abilities in Medicare patients. This is a big step in the right direction.

As my husband’s caregiver, I am learning, and struggling with, how to ask for help and to make time for self-care. These are not easy skills to learn and often my pride gets in the way. Services and resources for the caregiver, such as respite care and support groups, are available through the area agencies on aging and the Alzheimer’s Association. For me the biggest step has been admitting I cannot do it all and need assistance from others. Many of us are caregivers with full-time jobs. If you have a co-worker who is also juggling caregiving responsibilities, offer a helping hand. It will be appreciated, as it is hard to ask for help.

Yes, my husband’s light has dimmed. Yet I take great comfort in realizing that his bright light has illuminated the pathway of social justice for the new change agents to come. And foremost, the light of our love and commitment continues to be a beacon and will shine bright in our home forever.