Get used to saying “Yes.” If a parent appoints you to be their Health Care Proxy you will be asked the same question by hospital staff, rehabilitation facility staff, and social workers. “Are you the Health Care Proxy?” Yes. That affirmative response allows you to assume your advocacy duties for medical decisions. The range and scope of healthcare decisions cover everything from nutritional choices (what does your mom, who is on a low salt diet, want to eat for lunch?) to Do Not Resuscitate orders. If a loved one is aware and communicative then many care decisions will be made by them. When illness impacts a person’s energy and limits their overall cognitive abilities then the Health Care Proxy will be called upon to decide.
Day to day advocacy is a balance between proactive steps and reactive decisions. Pushing for a more aggressive physical therapy program following a fall is an example of proactive advocacy. Regaining mobility is vital for an aged loved one’s independence. Proactive steps that offer positive results empower the caregiver and help the loved one. These successes compete with the numerous reactive decisions that accompany long term illnesses. A parent or spouse that requires numerous hospitalizations will potentially be admitted to several facilities thereby repeating the entry of the patient’s history for electronic medical records. Caregivers will notice that information may be missing or incomplete as these medical histories are compiled and in conversations with medical staff. Keep good notes and keep track of doctors, procedures, and hospital stays.
Your phone will be ringing. Hospitals require Authorization for medical procedures and you are the decision-maker. Physicians will present their evidence and professional opinions. Do your research and ask questions. Find out the short and long term benefits and drawbacks to a medical procedure. There are often intangible and overlooked factors for allowing a procedure to go forward or not. Longer hospital stays sometimes lead to skin breakdowns and other health issues based on being bedridden. Alternatively, pushing for an earlier discharge may backfire and lead to rehospitalization.
Caregivers have to think three-dimensionally about a loved one’s care. Is care at home realistic or is an assisted living or nursing home more appropriate? Discharge planning is a major component of being a decisionmaker. Which environment will allow a loved one to thrive while also putting the least strain on the family? If the support structure crumbles then caregiver and loved one will suffer.
The reality is that caregivers rise and fall on the day’s news. A loved one making progress is a good day. A declining patient with symptoms that cannot be easily explained falls on the caregiver like a wheelbarrow full of bricks. This seesaw experience is emotionally draining because these pressures and mood shifts coupled with the usual daily responsibilities can overwhelm a caregiver. For caregivers taking care of a parent while juggling a career, spouse, and children the sensation of overload is palpable. Asking for help in those moments is always a good idea.
A successful advocate is not always crowned based on the big medical decisions. Delivering a comfortable pair of shoes for physical therapy, an unexpected hospital visit, a conversation with the nurse, and remembering a funny story together with your loved one can be the best advocacy. Contact the professionals at Sloan and Feller today for more information on caregiving, advocacy and the law.
