Managing Healthcare of Your Elderly Parent

The healthcare system in the United States is one of the most modern but comes with its set of complexities. My mother was hospitalized many times, and over the past 10+ years, I’ve learned a lot. Now I better understand how the system works, and have become a better advocate for her care whenever she’s admitted to the hospital.

Starting advance care planning sooner than later reduces stress 

Advance care planning is much easier if done ahead of time versus during a crisis. Handling legal paperwork sooner than later prevents you from making decisions under duress. Making decisions on behalf of your family member alone can be just as stressful as making decisions involving multiple relatives. However, when these difficult situations are planned for earlier, everyone is more likely to be at ease.

A crucial part of advance care planning involves legal documents: a durable power of attorney for healthcare and a living will. When a healthcare professional asks you if you have an advance directive for your family member, they are referring to those documents. Advance directives only come into play when someone is in danger of dying and incapable of making decisions. To grant your loved one’s wishes, discuss what they want before it’s too late. In the living will, they can specify the care they want if they become permanently incapacitated or terminally ill. In the durable power of attorney for healthcare, they can identify the person who will make medical decisions on their behalf if they are unable to do so. Your family may choose to have one or both of these documents.

I am my mother’s primary caregiver, and we established a comprehensive general power of attorney (POA) that covers a wide range of decisions from financial to healthcare. My mother has epilepsy due to a brain tumor. While most of her seizures are not life-threatening, decision-making is temporarily impaired after an episode. I keep an electronic copy of our POA that I can quickly email to the hospital so they can have it on file. This is a good practice if your family member has a known condition that causes them to lose consciousness or cognitive capabilities.  

Some of us may be fortunate and have siblings or other family members that can provide care. If so, the POA can designate secondary and tertiary proxies. Life is unpredictable, and a backup is always a good idea, just in case you are unavailable.  

These legal documents make handling your loved one’s care more manageable and empower you to look out for their best interest.

There are other medical decisions to discuss with your aging parent related to end of life, such as DNR orders and organ donation. A DNR (do not resuscitate) order tells medical professionals that you do not want life-support measures such as CPR. DNI (do not intubate) orders advise medical staff not to use any breathing machines.  These documents supplement your living will and are also good to have in the medical file or posted bedside. 

Nursing homes and hospitals may ask about organ donation when the end of life approaches. Donation preferences can be noted in advance directive documents, and some states have preferences on driver’s licenses. Using machines to sustain life until organ removal procedures can be performed is a possible outcome, which conflicts with DNR/DNI orders. Be sure to clarify the importance of organ donation with your family member so that you know specifically what they desire. 

Educating yourself on your loved one’s health issues makes you a better caregiver 

If your mother or father has medical problems, taking the time to understand the causes and symptoms helps you provide more adequate care. When you recognize expected changes, you can avoid overreacting and put them at ease. Even if your family member does not have medical issues, the natural aging process comes with challenges that are not easy to accept. My mother complained to her primary care doctor, “I’ve never had swollen feet, incontinence, or arthritis before.” The doctor’s clever response was, “Well, you’ve never been 82 years old before.” 

Thanks to the Internet, there are plenty of medical resources at your fingertips. Whether the disease or condition is common or rare, you can find an association that provides valuable information. Some associations offer contact information for local support groups and newsletters to keep you informed. If the doctor does not provide additional information, request it, and don’t be shy about asking questions. I have discovered that nurses can be very helpful too, and communication on a patient portal can be effective as well.

My mother was never interested in these resources, but they were useful for me as her primary family caregiver. Understanding that my mother may have periods of confusion in the mornings due to a benign brain tumor, allowed me to stay calm and provide comfort. Understanding her condition also made me aware that precautionary measures were needed even though she appeared very independent and resisted help. 

Another way to obtain valuable information is to share your stories with others. When chatting with co-workers about being a caregiver to my mother, I discovered that many could relate to my challenges and fears. While the situation was often stressful, having parents around as you get older is a blessing. I would love to hear about your stories – the good, the bad, the ugly, and the comical. You can share your testimonies and thoughts here to encourage others or simply get something off your chest. 

In addition to gaining in-depth knowledge of medical conditions, learn about prescribed medications. Conduct independent research and ask the doctor and pharmacist questions to familiarize yourself with the risks and side effects. Be prepared to explain any side effects that your family member has experienced while on their current medication(s). The tolerance level of a medicine can determine whether the dosage can be adjusted.  

After you have a solid understanding of the diagnoses, the next thing to do is to keep a record of your family members’ medical history. I used to carry a printed document in my purse, but now I have documentation that I can access on my phone that includes my mother’s surgeries, medical conditions, current medications, and allergies. Trying to remember everything is difficult when a medical emergency arises, and healthcare professionals always appreciate when you can provide timely and accurate information.

Many of my mother’s emergencies were related to the seizures she suffered, which caused my mother to become incapacitated. It was always beneficial that I was able to provide accurate medical history on her behalf. Even if your family member is alert, they may not be able to recall their medical history accurately all the time. 

Being a strong advocate for your family member leads to better care

The level of care that your mother or father receives determines their long-term outcome. Caregivers can ensure that the best care available is provided. For some conditions, your current healthcare provider may not be sufficient. I learned the hard way when I discovered that medical care in rural areas has its shortcomings. 

Because I educated myself on my mother’s health issues, I learned that the best treatment starts with the proper diagnosis. Hospitals in rural areas can have the best intentions in caring for your loved one. However, their diagnostic technology and knowledge of advanced treatments may lag behind hospitals in major cities. 

It is incumbent upon you to research your family member’s condition and healthcare options to obtain the most accurate diagnoses. Read up on the medications and their effectiveness to determine if the care you are receiving is the best available. 

The size of my mother’s brain tumor was measured more accurately when she was transferred from the hospital in her rural area to a hospital in Atlanta. An ER doctor confirmed my decision to transfer my mother to another hospital after he admitted that the equipment at his hospital was not advanced and that my mother would get better care at a hospital in a bigger city.  

Building a rapport with your family member’s healthcare team is extremely important. They invest their time into taking care of your loved one (mother and/or father), and involved families lead to better outcomes. While no healthcare professional should become annoyed by your questions, I’ve found that when you speak calmly and use medical terms properly, they are more attentive. On more than one occasion, I was asked by my mother’s doctors if I worked in the healthcare field due to my medical savvy. LOL!

Whenever you feel that your loved one is not getting the best care, do not hesitate to escalate matters to the next level by contacting hospital administrators or regulatory authorities. Sending complaints to hospital administrators and medical boards has led to improved care for my mother. Check out these resources if you need to file a complaint. 

A few years ago I became weary of the ongoing trial-and-error diagnostics that my mother was going through, and the doctor refused to process transfer orders. Within 24 hours of contacting the medical board and advising them of the situation, my mother was transferred by ambulance to Atlanta to a different hospital. As I stated earlier, rural hospitals lack the technology that hospitals in major cities have. 

I have had some great experiences with hospital administrators who intervened and helped my mother receive enhanced care after I had to make complaints. Do not be afraid to speak up. Send emails, leave voicemails, and schedule time to meet with administrators if needed. While your mother or father is healing in the hospital, what you do away from their bedside can make a positive impact. 

Based on all my experiences, I feel that I am more confident than ever when it comes to making the best decisions for my mother’s care. I understand her health issues, the prognoses, and her wishes. While I am not looking forward to another trip to the ER, I’ve come a long way. I am thankful each day that my mother is still here driving me crazy. Stay strong my friends.  

Enjoy the journey.