Are you wondering how to figure out what’s wrong with aging parents when you notice small changes or suspect that something is wrong with their health? If you are new to caregiving, you may have little or no experience working with the healthcare system. If so, you may not know how to work with medical offices or community health centers.
What’s Wrong With Aging Parents?
It may be possible that your elderly parents may have been healthy up until now. Or maybe they managed their doctor appointments.
But now you suspect there’s more to the story than they tell you, and you’re concerned. My elderly parents were great at not telling us information about serious health concerns until they had no choice because they didn’t want to worry us.
During this program, we’ll talk about how to open up conversations with aging parents so that they share information to help you figure out what’s wrong and where you can help.
Caregiver Resources for Daily and Medical Care
Following this topic, we will examine how limited experience can make it challenging to spot health problems or warning signs that can prevent health emergencies. And last, I’ll share steps to take to prepare for doctor appointments, including a link to a Patient Toolkit that you can find on my website pameladwilson.com in the transcript for this week’s episode number 159.
You can download and print a copy of this toolkit that you can use as a guideline to prepare for doctor’s appointments. My online program also includes a 5-5-5 process for planning doctor appointments.
You can find more information about taking parents to doctor appointments in Module 2, Signs Elderly Parents Need Care by clicking on the link below. This module takes a deep dive into initiating practical conversations with parents about managing health and day-to-day activities and how to work with the healthcare system.
Conversations with Aging Parents About Managing Health
Let’s begin with how to talk to parents about health concerns. Depending on your relationship with your parents, this may be an easy or difficult conversation.
Parents may wonder why you are suddenly taking an interest in their health, which they may view as a personal issue that they don’t feel comfortable sharing. On the other hand, aging parents may be delighted that you are taking an interest and want to help.
But, realize that as a spouse or an adult child, stepping into involvement with a loved one’s health opens a new door for ongoing work that can turn out to be way more than you imagine. This tipping point from being a husband, wife, daughter, or son to becoming a caregiver may seem like no big deal at first.
If what’s wrong with aging parents is easy-to-manage health problems or help with simple tasks around the home, this can go on for years. Until one day, an accident, unexpected hospitalization, or a health diagnosis turns everything upside down.
After that, life is filled with events impossible to anticipate. One day, a person is healthy, and the next, one is in the hospital.
How to Know When to Go to the Hospital
How do you know when a condition is severe enough to warrant a trip to the hospital emergency room for an aging parent? First, look for signs of sudden illness.
- Mental confusion, slurred speech, or an inability to recall information
- Difficulty with breathing
- Pain or pressure in the chest or stomach or a severe headache that doesn’t go away
- Broken bones, injuries, vomiting, blood in the urine, burns, bleeding, lightheadedness, or dizziness
If your parent has a condition like diabetes, one or more of these can happen. In that event, giving any type of sugar, like a candy bar or a soda, can be helpful until you can determine the next steps.
As you learn more about your parent’s health diagnosis, you will know how to identify conditions you can manage at home versus those requiring a visit to the doctor or hospital emergency room. If unsure, err on caution and opt for the hospital emergency room.
When Aging Parents See Doctors
Taking elderly parents to doctor appointments is more effective when caregivers understand their health conditions and ask questions.
- Attending medical appointments with parents and reviewing visit information online or printed from a medical health portal, often called an E-H-R or an electronic health record can be a great learning experience.
- Knowing how or if health information is shared electronically between doctors your parents see is essential to ensuring that care is coordinated.
- With this knowledge, you know whether it’s your responsibility to make sure that an exchange of records happens or whether you can refer the medical provider to the electronic health record when you attend appointments with your parents.
How to Spot Health Problems in Elderly Parents
Trying to figure out what’s wrong with aging parents can be accomplished by taking additional steps to understand the information in their health records.
For example:
- What is a parent’s list of diagnoses?
- How long has this condition been diagnosed?
- Is the condition stable, or has it worsened?
- Do mom and dad take medications for each diagnosis?
- And a better question, have medications been recommended but declined?
Doctors can offer treatments that patients decline. So as an advocate for a spouse or aging parents in trying to figure out what’s wrong, it’s good to know if a parent has refused any medications or treatments.
Why Aging Parents Refuse
Aging parents or a spouse may refuse care for several reasons. Some may include:
- Financial concerns over being able to pay for prescription drugs, medical tests, or other costs not reimbursed by insurance
- Not having enough information about the diagnosis
- Fear of the unknown
- Personal values or beliefs about health
When trying to figure out what’s wrong with aging parents, questions family caregivers can ask include: what do you want for your care? Do you understand the diagnosis, the consequences, and what doing nothing means?
Initiating this conversation assumes that the caregiver knows the answers to these questions so they can provide additional information. If you don’t know, then these are questions to ask at the doctor’s office so that the doctor can explain the consequences, the risks, and the pros and cons for health.
Exhaustion or Memory Loss Can Prevent Understanding Medical Care
Another consideration when mom or dad refuses care is to identify if they are mentally exhausted, not feeling well, or depressed.
Experiencing any one of these conditions can make it more challenging to follow along with the information presented.
For example, if you have an aging parent diagnosed with dementia or Alzheimer’s, refusals commonly happen because a person cannot understand or process the information from the doctor.
In these cases, if you are the medical power of attorney, the decision is yours to make, knowing what your parent would have done before the memory loss diagnosis.
There are also other reasons for refusing care. For example, aging parents may not want to be a burden to their children who work if they need transportation to medical appointments.
What’s Going On With a Parent’s Health?
There is also the idea of “autonomy, ” a word used by health and legal practitioners. Autonomy means being able to make decisions about what a person does or does not want.
Everyone has a right to decide how they live, where they live, and how they approach health concerns.
However, autonomy can be conditional when parents age and can no longer live independently or be self-sufficient. Becoming dependent on others is a tricky stage when parents feel that adult children take over their lives and ignore what they want.
When parents need the involvement of adult children who become their caregivers, compromise can be necessary. As a caregiver, if a parent refuses care, it’s a good idea to have a deeper conversation about why.
You may be more patient and understanding when you think about this conversation as an opportunity to learn how a parent feels. Because in a similar situation, you may want the same consideration. Here is an opening statement for this conversation.
“Mom or dad, you told me X isn’t right for you. Share with me what isn’t right for you means when it comes to X.”
After you ask this question, you can only ask more questions and listen to the answers. Your goal, at least at this point, is not to offer more information or try to convince mom or dad otherwise.
When you understand the reasons for the refusal, repeat to mom or dad what you heard them say to be sure. Then if you have information that might be helpful, ask if you can share the details.
At this point, mom or dad will either continue to disagree or agree to treatment. Regardless of the outcome, it’s up to you to decide or schedule the next steps.
Setting Boundaries With Parents Who Refuse
Let me use an example of a caregiver trying to encourage parents to complete medical and financial power of attorney, a living will, and a will. Parents refuse. The caregiver sees the effects of what might happen to their life and becomes filled with anxiety.
In this case, what options exist? There is a term in health care called harm reduction. This usually applies to treating adults with substance abuse problems who are unable or refuse to change their habits.
You can also think of this as harm reduction for persons with diabetes or anyone who refuses medical treatment. The process asks how to keep a person engaged or involved in discussions with doctors or care at a level acceptable to the person refusing treatment.
So, as a caregiver, you are the person trying to help who wants to keep aging parents involved in the conversation. You can say, “mom or dad, I understand that it’s not important to you to complete legal documents so that in the event of an emergency, I have the authority to carry out your wishes.”
So, I want you to know that I am taking myself out of the middle between you and the doctors so that you can make your own choices. I’m happy to visit, but I will no longer be involved, nor will I be your caregiver. Let me know if you change your mind and want me involved in a decisional or more supportive role.”
Planning and Procrastinating Have Consequences
Stepping out of coordinating care and being involved in a parent’s health allows the caregiver to reduce their involvement and responsibility. Taking a step back can be beneficial if you lose sleep because parents refuse to make decisions about their care or not creating an emergency backup plan.
The goal of setting boundaries is not to threaten your parents with abandonment but to be clear about your boundaries and differences of opinion.
In the current situation, you feel that being proactive is a better way to manage than responding to crises. So you are choosing not to be an aging parent’s crisis management team.
In life, some people plan so that they have options when the unexpected happens. Others procrastinate until they must act. These are fundamental beliefs and habits about how to approach life.
It’s okay if you and the person you care for have different beliefs about managing your life. But when you are the caregiver, this becomes a point of disagreement where if you fail to set boundaries, your life will be dictated by the decisions or procrastination of a non-planner.
Placing Responsibility on Aging Parents for Their Actions
While this may not be an ideal situation that reduces your anxiety, at a minimum, you have confirmed that your parents want to make their own decisions and control their lives. If or when something happens, your parents are responsible for their actions and choices.
You can maintain an arms-length relationship by suggesting aging parents work with their doctors to find resources for the assistance they need. The more a caregiver does for an aging parent or a spouse, the greater expectations will grow for help in the future.
Being overly helpful is a caregiving trap that adult children and spouses fail to consider until it’s too late and the caregiver feels overburdened.
The Process of Problem-Solving
Let’s begin with the thought process of trying to figure out what’s wrong with aging parents that eventually leads to attending medical appointments.
As an individual, our ability to solve problems or figure out complicated situations may be limited to our personal experiences or investigations into proven processes.
The same success in decision-making applies to an aging parent or spouse we care for—we all have skill limitations. However, there is an unlimited ability to learn if we are interested.
So the first area to think about is how people understand events, information, and other people based on beliefs and experiences. An example was the suggestion to ask a parent why something isn’t for them and to listen without responding or making suggestions.
As a caregiver, if you disagree with something, ask yourself why it’s not for you or why you disagree to get down to the nitty-gritty of why you think the way you do. Because the more you learn about your thought processes and decision-making abilities, the easier it will be to understand what’s wrong with aging parents and to problem-solve in other situations.
- Do your emotions have a significant impact on the decisions you make?
- Are you easily influenced by friends or peers so that you will change your opinion to have more in common with people in your social group?
- Are you motivated to arrive at the conclusion you want?
- Or do you remain open-minded about evaluating both sides and then making a decision?
Solving challenges may become more manageable when you pay attention to thought processes and how emotions or peers affect decision-making.
Now when something happens, instead of reacting automatically, you may pause and take a different perspective that says, “hmm, I used to respond emotionally to this event. Instead, I will think about this logically and then decide.”
Or, while I may ask my friends what they would do about this situation, I will make the best decision for me. When making decisions, you may realize that you don’t have enough information or may not interpret the information correctly, which leads you to further investigation.
Medical Appointment Patient Toolkit
All these processes to gain insight into decision-making are valuable in figuring out what’s wrong with aging parents when you begin to work with the healthcare system, doctors, nurses, and other providers. In the show transcript, for this episode number 159, you can download a copy of the Society to Improve Diagnosis in Medicine Patient Toolkit.
The patient toolkit is a five-page document you can download and complete online or print and complete. It’s an excellent resource for caregivers or yourself to attend medical appointments.
A copy of the Patient Toolkit in Spanish is here. Both versions are in a PDF format that you can print or complete on the computer.
The format focuses on preparing for the appointment, identifying symptoms or pain, documenting medications, herbs, vitamins, and supplements and why these are taken, and a what’s next page after the doctor’s visit. Caregivers can help a spouse or an aging parent complete the form.
The benefits are that you will likely get a better diagnosis by being factual and detailed about concerns. The document also helps differentiate between you, your parent or spouse, and others the doctor may see as having similar conditions that can sometimes lead to a poor or missed diagnosis.
The Society to Improve Diagnosis in Medicine website has a lot of helpful information for consumers. I’ll include a link to the site in this show’s transcript.
Prepare for Doctor Appointments
Let’s discuss preparing for an appointment.
1 – Document medical history, surgeries, major illnesses, and past medical procedures. Plus, past treatments and medications.
2 – List the top medical concerns for the appointment and what you want to discuss first at the appointment. Then you can document whether any prior medicine or treatment has worked or not worked.
3 – Describe symptoms like pain, dizziness, other concerns, when symptoms start, and what makes the condition better or worse.
4 – Plan to write down the doctor’s recommendations, next steps, and follow-ups.
The patient toolkit form makes it easy to prepare for the appointment, share information with a doctor and have a list of what to do next.
Keeping copies of this form on hand can help caregivers and the persons receiving care create a timeline of concerns and progress toward resolving issues. It’s a simple system that anyone can use.
Tips to Manage Daily Care for Parents
In my online caregiver program, I discuss the importance of different processes to manage health concerns, documentation for medical appointments, and creating ongoing routines to simplify care.
Because family caregivers have so much happening in their lives over and above caring for another person, it’s easy to feel overwhelmed with all that has to be done.
Caregiver overwhelm can result from mental exhaustion and inability to deal with complex situations, problem solve, or interpersonal conflict. Unfortunately, these are not skills we routinely learn unless our daily work involves learning and perfecting these abilities.
Caregiving activities are frequently based on trial and error. You learn what works and what doesn’t work.
While being a caregiver may come naturally to you, the skills to manage medical care and the financial and legal aspects can be learned. The best advice I can give is to find help early by joining an on-site or online caregiver group.
Seek Caregiver Help and Support
Ask for help from your doctor’s office or community health center. Find out if the community health center or the health insurance company has special programs for managing chronic diseases like heart conditions, diabetes, arthritis, COPD or breathing problems, dementia, cancer, and others.
Learning out what’s wrong with aging parents can be a process. Don’t give up if you don’t get it right the first time.
As parents age, you will find that one condition, like heart disease, can lead to diabetes, which leads to kidney disease and other health complications. Managing a parent’s care is why having a thorough understanding of a parent’s diagnosis and steps to manage care can give caregivers the peace of mind that they are doing all they can.
As a caregiver, make time to care for yourself. The knowledge you gain as a caregiver and caring for others translates to the wisdom you can use to care for yourself and pass it down to your children, family, and friends.
Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.
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