As a caregiver for your parent, it is probable you are communicating with their physicians and are active in their daily medical regimen. As a result, it's critical that you develop a healthy system for asking questions you need to get the information necessary to assist your parent on their healthcare journey.
One of the most important duties as a caregiver is to advocate, when needed, for your parent with their doctors and medical staff. As their advocate, you are the eyes and ears at your loved one's doctor's appointment to take notes, ask pertinent questions, and follow up to get clarity on anything that is not understood. While it's great to be there as a helping hand for your parent, it's also crucial to step back and let them speak for themselves. The best way to nurture the trust in your relationship is to learn when to speak and when to let your parent take the reins.
Reflecting on my caregiver journey for my mother, from her pre-MS diagnosis to now, I have remained her advocate throughout, but I eventually had to alter my conduct with her medical team. Over time, I learned the value of being more respectful of my mother's wishes and arrived at a consensus of the best plan for her.
So here's what I mean.
At the first signs of my mother's strikingly odd behavior, I pushed my mother to see several doctors in order to get a complete understanding of what was happening to her. I was so anxious to find the cause of her behavioral change, I would become upset with her for choosing not to trust my judgment or follow the doctor's instructions.
My frame of thinking at that time was that my mother should do everything possible to get clarity on the complications she was experiencing. The trouble was, she had little to no awareness of the behavioral changes I had seen. Because of her lack of self-awareness, it was difficult to obtain cooperation from her when it came to seeing a doctor or taking a prescribed medication. Due to our different perspectives, the situation between us would get tense particularly if my mother refused treatment.
Looking back after the first physical and MRI, the radiologist indicated the possibility of Multiple Sclerosis and suggested that my mother see a neurologist. My and I did not agree with that possibility at the time, but I still encouraged my mother to see a neurologist. She refused because of fear. Her explanation was that she didn't want to know if she "had a brain tumor." I interpreted this as the potential of her knowing this information would be too much for her to bear.
We continued to see doctors who treated her symptoms, which were the behavior changes, with medication.
Almost two years later, my mother fell and broke her femur, which eventually lead to her Multiple Sclerosis diagnosis.
Once we had a diagnosis, I found peace in having clarity. My mother seemed to become more cooperative and wiling to follow the medical protocol to slow the progression of the disease. The tension between us seemed to dissipate and I learned to let my mother speak for herself and to be more respectful of her feelings. If I needed to say something to the doctor, I waited to speak with him privately.
Over time, my mother participated in her appointments with the doctor until recently, within the last three or four years. I've noticed my mother enjoys seeing her doctor but sees it as a visit and doesn't engage and ask questions anymore. She still tells him what she does and does not want to do. Mostly, she doesn't want many interruptions to her life. She is now 86 and is enjoying life on her terms.
But, I still have the questions; and I try to understand the continuing changes in her health. She has taken a back seat and gives me permission to speak on her behalf, but this is done with her consent, and she prefers it this way.
Over twenty years of caregiving, I've learned how to better fulfill my role as her advocate during doctor's appointments; take a step back and stop pushing my mother to accept a treatment she is not willing to take. I now understand it is her right to make good and bad decisions based on what she wants for her own quality of life.
Here are a few points to consider as you advocate for your parent with their medical team.
1). Make sure the physicians have the appropriate medical paperwork that allows you to speak directly to the medical team and receive information on your parent's behalf. The necessary paperwork includes durable power of attorney for health care, a Do Not Resuscitate (DNR) form, or advanced directive, and medical insurance form.
2). Be your parent's eyes and ears. Listen carefully to what the doctor is saying and ask for clarification if you don't understand something. Take notes and make sure you have a conversation with your parent to ensure they didn't miss any important information. This gives you them a chance to process what they learned and share their thoughts or concerns with you.
3). Educate yourself about the illness. Research the condition and write out questions for a follow-up visit with your parent's medical team. Ensure that you understand the recommended treatments and share with your parent what you're learned.
4). Have open and honest conversations with your parent to understand their wishes related to treatment, and quality of life issues. Be willing to check in periodically for any potential changes of opinion.
5). If your loved one's prescribed medication is costly and not fully covered by insurance, be sure to talk to their doctor about a possible replacement or a generic form of the drug. Ask about potential side effects of taking the medication or interactions with existing medication so your loved one can be aware of them before starting treatment.
6). If your parent is hospitalized or moves into a skilled nursing facility, it's crucial that you are present to advocate on their behalf. Typically, your parent won't always have the strength to advocate for themselves. Furthermore, many facilities are experiencing staff shortages and until you are present to observe and speak up for them, your parent might not have the attention they need and deserve. Your presence will also help with the ease of communication.
7). Keep records of your loved one's health visits. If your parent needs to change physicians or visit the hospital, you should be able to communicate their medical history to the attending medical team.
8). Take the time to acknowledge and thank the doctor and medical team for their work. They are part of your parent's support team, and they are on this journey with you both.
Your role as an advocate is crucial. Whether your loved one is on a doctor visit, is hospitalized, or residing in a skilled nursing facility, the advocate role requires you to take critical action on their behalf. This is most necessary when your loved one is unable to speak for themselves.
It's important you take care of your own mental and physical health as you continue to be the best advocate for your loved one. It can be emotionally challenging and physically draining. Be sure to stay on top of your own preventative and wellness activities and appointments.
Our loved ones are depending upon us.
