Lawrence J. Weiss and Lynda Hascheff
Families—not institutions—provide the majority of care to chronically ill and disabled persons. These families know the enormity of the burden in caring for someone with Alzheimer’s or Parkinson’s diseases, stroke, traumatic brain injury, or other long-term conditions. They also know the challenges in locating appropriate advice, services, and respite.
Personal experience with community agencies, round-the-clock care, and financial hardships mean families know what the important issues are. This puts family caregivers in a unique position to act as advocates. Caregivers can educate providers about the care recipients needs as well aa elected officials charged with development of public policy and funding priorities.
Caregivers and care receivers serve as the source of information for the healthcare system for current and past health histories, surgeries, allergies, medications, and more. The time and effort involved to manage and coordinate care needs, depending on each situation, can approach the time and perceived burden of being a part-time or full-time job. The skill of advocacy is important to receive better than average care.
Advocacy is rarely a natural skill but is a learned skill. Expert programming specific to healthcare advocacy, caregiving, and care receiver issues is targeted to specific needs. Family members also lack an understanding of the fiduciary role of medical and financial power of attorney. These issues include managing the emotional ups and downs of care relationships, identifying reasons for refusal of care, identifying memory loss, the decision to take away the car keys, and other difficult situations that must be managed day to day. Many variables exist in care situations and many are unexpected and unplanned. Caregiving experts with years of direct experience offer real support and real answers to complicated care situations. Learning the skill of advocacy supports achieving desired results for caregivers and care receivers. Expert programming is ideal for caregivers and care receivers who want to increase confidence and the ability to manage daily challenges and care needs.
Caregivers themselves need to be educated to deal especially with medical providers, but in essence all services as well. Educating caregivers who may be unfamiliar with aspects of caregiving and healthcare promotes the need for advocacy. Caregivers and those needing care often feel vulnerable to organizations of which they have little knowledge, especially the healthcare system. This lack of knowledge places care recipients in a position of receiving inappropriate or substandard care. The caregiver needs to provide the healthcare service providers with information about the identified patient that they themselves cannot provide. This in turn will provide the care recipient with the needed and beneficial care.
Case Examples: Lynda Hascheff
I spent a lot of time caregiving for my mother and my aunt through each of their journeys with cancer. Besides watching someone you love die from a horrible disease, the experience with the health care system may have made it twice as awful.
Some questions I’m left with: When and why did our elders become irrelevant and invisible? Why does their life experiences and contributions not come with some value and gratitude? When did the need to slow down and explain things to them, maybe repeatedly, become a bigger burden than their right to respectful care? When did convenience of an office system (one practice had them signing in on tablets with NO ASSISTANCE and a lot of huffing and puffing when it wasn’t completed) become more important than the comfort of the patient who was already so sick they probably had a hard time keeping their head up (and their presence was keeping the practice in business).
I’m convinced that if my mother and my aunt did not have an advocate with a little knowledge and time to help them, they would have received far worse care and very little consideration for their needs and/or rights. As it was, they were given care that put them within one breath and one step of losing their life without their health care team taking a good look at them when they came in for treatment to notice how poorly they were doing before starting their procedure. And all the while they continued to be pumped full of chemo and/or immunotherapy treatments regardless of their blood pressure, or their ability to barely say a word or keep their head up, but FOR SURE there was time to discuss the bill and copays at the end of the visit. At times they waited HOURS on a health care professional to see them. It’s as if the elderly person standing in front of them never registered in the eyes of the medical staff as a human being, but just as a task and/or a number.
I have spent enough time in the waiting rooms of oncology offices to know that the majority of the patients being treated are elders. When I ask the medical staff how many studies had been done on the efficacy of the treatment they were receiving on people their age, I was greeted with dirty looks and ‘crickets’ for an answer.
There have been many, many times we were told to go to the ER when my loved one couldn’t keep water down or spiked a fever. Once there, we waited literal HOURS before anyone could help or get them into a room. By the fourth or fifth trip I refused to take them (as they were also placed in the path of other people waiting who may have infections or colds). However, many times they were admitted to the hospital and were typically given hydration and steroids, which seemed to temporarily improve their condition a little bit. After about the fourth trip to the hospital, on discharge I asked for steroids ‘to go’ and the ability to get regular hydration treatments for my loved one. The discharge doc actually said to me “I can’t prescribe you steroids as they are very dangerous….” I literally laughed out loud and asked “more dangerous than stage 4 renal cancer”. At that time, my aunt had been admitted to the hospital 5 times that month and given the same palliative treatments? Needless to say, my aunt has been prescribed daily steroids as the (very expensive) immunotherapy killed her pituitary gland and her endocrinologist said she never should have been prescribed that treatment….
Every time my aunt was admitted to the hospital I stayed by her side 24/7 as she is allergic to SO much medication, bandage ingredients, food, etc., and I was worried they would not pay close enough attention of her allergies, and they didn’t disappoint me. One time I was in the room and the nurse rolled in her with computer with bandage tape hanging from the monitor and a cup of pills to give my aunt. I asked her what the medication was in the cup and what kind of tape was hanging from the monitor. After she answered I said “oh, are you going to give those pills to my aunt and use that tape?” The nurse said “I sure am” to which I said ‘no you are not as she is allergic to both and I have asked it to be added to her record every single time we’re here – which is often”! Oy Vey!!! Needless to say, I was not very popular in any medical setting.
Another time my mother had been admitted to the hospital (she had multiple myeloma and her spine was crumbling) and there was an alarm on her bed because she was a fall risk. I never left her side while she was there, and one night she had to use the restroom and I couldn’t handle her by myself without causing her a tremendous amount of pain, so I stood her up and the bed alarm went off. It took over 20 MINUTES for anyone to show up to help. What kind of care is that?!?! I often think about other elders in similar situations who do not have family near or friends that can help them, and wonder how they fare in these situations. I can’t help but conclude they do not get the care they deserve and that makes me very sad. And it makes me very angry. We need to develop training programs for family caregivers so they can become advocates for their care recipients. What better way could we add life to years.