Care for the Caregiver
By Barbara Huelat, FASID, AAHID, EDAC
Volunteer caregiving is a difficult job that rarely finds its way to resumes. Some survive, many do not. Survivors all have battle scars. They have little or no training, no honors, badges, or metals of honor. They sacrifice out of love. How do we empower future caregivers?
Who are Caregivers? 
A caregiver is a volunteer responsible for taking care of another person; for example, a person who has a disability, or is sick or very young. 80% of us at some point in our lives will be a caregiver. Caregivers are daughters, wives, husbands, sons, grandchildren, nieces, nephews, partners, and friends.
Responsibilities
· Buys groceries, cooks, cleans house, or does laundry for someone who needs special help doing these things
· Helps a family member get dressed, take a shower, and take medicine
· Helps with transferring someone in and out of bed, helps with physical therapy, injections, feeding tubes, or other medical procedures
· Makes medical appointments and drives to the doctor and drugstore
· Figures out paperwork, the medical system, medical conflicts
· Makes major decisions at all levels and states of crisis
· Talks with the doctors, care managers, and others to understand what needs to be done
· Spends time at work handling a crisis or making plans to help a family member who is sick
· Is the designated “on-call” family member for problems
· Personally, emotionally, and physically “care” for their loved one
· Worries about outcomes, finances, family conflicts, and loss
Cost of Caregiving:
· 44 Million Americans 37 billion hours of unpaid care each year
· Families provide over 75% of caregiving
· 65+ age group will double to 70 million by 2030
· Families provide care for aging parents, siblings, and friend with chronic conditions who wish to remain at home
Initial Research
I Interviewed and documented 11 personal stories. Listening to their stories and knowing that they are a part of the 43.5 Million caregivers out there that need knowledge and help. I ask how can we help this situation?
Caregiver Burden
· Caregiving involves complex responsibilities from activities of daily living like bathing and feeding to dealing with strange equipment, mood swings, disruptive behaviors as well as schedules for medications and doctor appointments.
· Caregivers are also faced with conflicting demands with family, work, and social activities. They see the suffering, social isolation and are required to make difficult decisions.
· They typically see increased financial pressure, loss of income, and often loss of their job. They often wander through complex forms of insurance, bills, and cost of meds without knowledge or guidance.
· Caregivers face physical and emotional health problems of stress, burnout, insomnia, depression, poor diet, declining health, and even death.
· They find little or unknown support. Where to get information, how do they find help? What are the rules? What do they do next?
What are Caregivers Asking for?
· Information – on the disease: “What is it? “How to manage it? What are the symptoms and triggers? What happens next?”
· Empowerment – “If you are asking me to manage this illness, pay attention to me, I know what I am talking about, I live with it.”
· Knowledge of costs – “Why is the medical system so complex, I don’t understand the forms and especially what something cost until after they send a bill”.
· Training – “Help me understand how to use the equipment? Not just the use, but what do I do if something goes wrong?”
· Resources – “Are there any resources that can help with the care, people, products, places? Don’t tell me to call X after the fact… I didn’t know that X even existed.”
· Knowledge – “I wish I knew about Hospice services much earlier. Social workers at the hospital could have discussed this with me when we had the dire diagnosis right at the beginning. The promotion of Hospice should be focused on Hospice as a more patient-centered way of managing long-term health care, not just a place where you take your loved one to die. The big point for Cay was to reduce significantly the trips to the hospital.”
Next steps:
I made the above was a presentation to the Planetree National Conference in Boston October 2018. It was based on my personal experience as a “Caregiver” leading to my question – “Do all caregivers experience the same complexities?” My mini research led me to the above conclusion. I would ultimately like to test and find solutions that empower caregivers and provides knowledge and solutions to these volunteers.
I am looking for additional stories. Do you have a Caregiver story that you would like to share? Please contact Barbara at bhuelat@healingdesign.com
Barbara Huelat is a healthcare interior designer of 42 years with a focus on Senior Living. She is a trained Hospice volunteer. Barbara has also been a caregiver for her late mom, mother in law, father in law, and husband Joe.
