If you are a caregiver you may be wondering how to manage care for a sick family member with everything else you have going on in life. If you are new to caregiving, you will quickly identify that being a caregiver can have a long learning curve of ups and downs, wrong turns, detours, and frustrations.
How to Manage the Impact of Illness on Family Caregivers
Caring for a sick family member can be challenging if you seek help from the healthcare system and lack experience. If you’ve been managing care for a sick family member for a while and are still struggling, I will share a few suggestions that might be helpful for you.
In either situation, my website pameladwilson.com has an open course webinar program called Support Caring for Elderly Parents with detailed information about managing care for sick family members taken from my twenty years of providing direct 1:1 care management services for clients and working with their family caregivers.
The program is all online. It can shave months, if not years, off the learning curve for caregivers.
Health Care Experiences
Caring for a sick family member usually arises unexpectedly. One day mom or dad is in the hospital or the doctor’s office.
If you have little experience working with the healthcare system, here is what those initial appointments might look like. First, mom or dad go to the doctor.
The doctor makes a diagnosis and typically writes a prescription. In some cases, tests may be ordered.
Mom or dad may not like or trust the doctor if medical appointments are new to them or if they haven’t been proactive about their health. Or maybe mom or dad has money worries.
The doctor says, “go and get these tests and come back and see me.” Unfortunately, your parents may not understand the need for the tests, so they’re unsure about following up.
Or mom or dad may be thinking, “doctor, you have no idea what my life is like. You are telling me to get a medical test that will cost me money and then come back and see you, which will cost more money. Money doesn’t grow on trees. I can’t imagine what today’s visit will cost me.”
Your parents are so worried about money and distracted that they don’t listen to what the doctor says about their health condition at the appointment.
Meanwhile, mom and dad nod their heads, agreeing with what the doctor says about the seriousness or effects of their health condition because they don’t want to be rude or admit that money is a problem. Asking questions or letting the doctor know about concerns is essential to get good care.
So, elderly parents leave the appointment with medical test orders and prescription information in hand, unsure if they will do anything. The paperwork goes in your mom’s purse and stays there.
Caring for a Sick Family Member
This event, caregivers, is where the problem begins if you don’t become involved. Now it’s true. Your aging parents have decision-making rights.
They have the right to do what they want. Live their life in the manner they choose. Listen or ignore doctors, refuse treatment, and so on. We all have these rights.
But parents don’t often think about the consequences for their children who are caregivers about what happens when they become sicker and need more help. So who is going to show up?
Well, that’s you. Even though your parents have never asked you if you will help them. From my experience working with older adults, most parents assume their children will help but never ask.
These assumptions and expectations make caring for a sick family member challenging. But it’s not as if most children don’t want to help—many do.
Expectations and Frustrations
But as with everything, there are expectations attached to the assistance. Children expect parents to follow through if the doctor recommends prescriptions or treatment.
You may not know that your parents are struggling financially or in other ways until they tell you. Most parents don’t want their children meddling in their personal or financial affairs.
It’s not until they have no option but to tell you—my parents were the same way—that you may be in shock if they’ve been hiding information from you.
One of the biggest caregiver frustrations about caring for a sick family member is the difference between individual goals. As the caregiver, you want to go on with your life plans that seem to be on hold since you are spending time caring for sick family members.
Your career may be on hold. College was a priority. But you can’t keep up, so you stop taking classes.
Marriage is now off the table. Your girlfriend or boyfriend wants to marry you, not care for your parents. Spending time with friends is a thought of the past—you don’t have any free time.
All the while, your parents may be enjoying your attention. They want more and more of your time.
The doctor may be frustrated with mom or dad, who has no interest in changing their habits or following recommendations. Your parents show up at the office and complain but do nothing to help themselves.
Care Planning
So discussions about care planning hit a brick wall. Caregivers worry about what happens when a sick parent’s health gets worse.
Elderly parents don’t want to discuss planning or preparing for future declines.
If this is your situation, it is time to dig in and seek information. Identifying what is wrong with your parent’s health means attending doctor appointments.
But before taking this step, ask your parents to share their health concerns, recommendations the doctors have made, and whether your parents followed up so that you have a basis for the next steps.
Let’s say your parents don’t think anything really serious is going on, but you’re watching their physical health or mental abilities going downhill. The next logical step is to get a realistic picture of their health from the doctor.
You attend an appointment. The doctor seems likable, but you were hoping for more proactive recommendations.
What to Call an Illness
Maybe a referral to a specialist for memory loss because you see significant issues. The doctor brushes off the concern, saying that forgetfulness happens to everyone as they age. You disagree because you are witnessing a parent become more forgetful over time.
Here is a statistic you might find interesting. Over 85% of patients diagnosed with memory loss are diagnosed by a primary care physician and never see a doctor specializing in memory loss.
Neurologists, neuropsychologists, geriatric physicians, and pharmacists are extremely valuable in helping families to navigate memory loss. One might wonder, do primary care physicians assume patients aren’t interested in planning for the future or are most doctors equally uneducated about specialty care for dementia and Alzheimer’s disease?
On the other hand, maybe there is a concern of mom or dad falling due to being unstable on their feet. As a caregiver, you were hoping for a recommendation to help mom or dad regain their strength or learn about a diagnosis that makes what you see make sense.
Sometimes all a caregiver or a patient wants is a name to call something. For example, forgetfulness is the result of dementia or Alzheimer’s. It’s important to talk about memory loss within families.
Other concerns include a parent who is a fall risk due to physical weakness that physical therapy might address. Or dad has Parkinson’s, so his balance won’t improve. He will eventually need a walker or a wheelchair.
Some degree of certainty about future care for a sick family member can be comforting, even though receiving the news is not what you hoped. Knowing what you’re dealing with can be better than responding to one health crisis after another. You can prepare.
Physician Referrals
Having information allows you to become more educated and proactive in requesting referrals to medical specialists and learning about other services that might be available.
The doctor’s role is to refer patients to specialists and health and social care services, but not all are comfortable bridging the cap to recommend services outside the healthcare system.
This is a short list of concerns about physician referrals:
- Physicians might worry about their liability or reputation if they refer to a service on a list they don’t have experience with and the recommendation turns out badly
- They may feel that there is no time during a visit to ask about issues like the financial ability to pay for a prescription or a follow-up medical test like bloodwork.
- Another concern is the lack of communication and trust between doctors and social care providers.
When patients are referred to specialists, and the specialist does not provide updates in return to the primary care doctor, essential aspects of care can be missed. For example, one doctor may believe the other is following up on a test.
When both doctors miss follow-ups. Who suffers? The patient suffers if test results indicate timely treatment is needed and neither doctor advises the patient.
Healthcare System Challenges
For all these reasons, managing care for a sick family member takes time, dedication, and impeccable follow-up by the caregiver. Problems faced by family caregivers when working with the healthcare system include difficulty finding providers due to insurance issues or a practice decision to no longer accept Medicare or another insurance program.
If a change in doctor is necessary, it can take months to be accepted for a new patient appointment. In addition, being temporarily without a physician can be challenging if a parent has ongoing needs for prescriptions or treatment is underway.
There may also be other complications that relate to social in addition to medical conditions. For example, transportation to doctor appointments or treatments can be difficult.
Adult children cannot always take off work when parents are scheduled for multiple doctor appointments. For others, affordable housing and food needs exist.
Social Determinants of Health
So, I want to discuss the importance of sharing these more personal and sensitive issues with doctors and other healthcare providers. Because depending on where you live and the healthcare system you use, there may be support for these types of social concerns that you don’t know about that can be a big help in managing care for a sick family member.
So, bear with me because it’s a little complicated. I will give background information that might sound technical because it’s about the healthcare system and terminology like social determinants of health.
I know this information can be confusing. Mainly because of distrust of the healthcare system, the government, and politicians who fail to understand the effects of their decisions on the public.
But for caregivers, learning about social determinants of health is important. It can make a huge difference for you and your loved ones.
Models for Healthcare Services
A CMS 5-year study launched in 2017 called the Accountable Health Communities Model began looking at ways to address health-related social needs. Why do this, you might ask?
The goal of the model was to improve health conditions, reduce unnecessary costs like multiple hospitalizations, and address health disparities. What is a health disparity?
A disparity is a difference. So health disparities are differences between people relating to health that can also relate to differences in social needs.
The differences might result from income challenges to pay for housing, electricity, food, transportation, or health care. Most people experience these challenges at some point unless they come from an extremely wealthy family where they are born into money and a very comfortable situation.
If this is your situation, keep listening so that you can understand what most of the world experiences and why significant differences in health exist. This information may lead you to get involved in your local community to volunteer or donate money to make a difference.
Health Disparities
Here are more examples of health disparities. The environment contributes to health disparities.
Some people live and die in the town or city where they were born. Others live in rural areas without close access to healthcare. The nearest hospital or health clinic could be 20 or 30 miles away.
Others live in communities struggling with poverty or crime. Some live in unsafe communities making the simple act of leaving the house a concern.
Another explanation for health disparities created by Margaret Whitehead from the United Kingdom says that these are health differences that are avoidable, unnecessary, and discriminatory.
The CMS study is gaining traction in 2023 because of the work done by Accountable Care Organizations, Medicaid Managed Care, Medicaid health homes, and home and community-based service programs.
Traction means progress. The Centers for Medicare and Medicaid have announced “rules” for hospital systems, health insurers, and others that make it necessary for them to implement programs that address social determinants of health.
Why does this matter if you care for sick family members? Identifying these concerns with doctors and community-based organizations can mean family caregivers get support for themselves and services to help aging parents with health issues.
Twenty-eight organizations participated in the program in 328 counties, 21 states, and 7 of the ten largest US cities and rural areas. All used screening tools for health and social needs.
Health and Social Screening Tools
Let’s look at the questions asked in the screening tool. Some of you may find these questions uncomfortable.
Health and social care workers can feel uncomfortable because these questions are personal. In addition, the questions can make patients and consumers feel uneasy.
But the answers for those willing to answer led to receiving recommendations for support to address these issues.
This is a list of common questions in health and screening tools:
1 What is your living situation? Do you have a steady place to live? Are you worried about losing your home because of financial concerns or being unable to take care of the property? Is your housing
2 Does the place where you live have problems with pests like bugs, ants, or mice, mold, a lack of heat, appliances not working, water leaks, or anything else?
3 In the past 12 months, have you worried that you would run out of food before you got more money to buy food?
4 In the past 12 months, did the food you bought run out, and you didn’t have money to get more?
Can you see how worrying about These basic things can be stressful, especially if you are trying to care for someone else?
5 Did reliable transportation prevent you from attending medical appointments, working, or getting things you needed for daily life?
6 In the past 12 months, have you had trouble paying electricity, gas, oil, or water such that the company threatened to turn off services?
7 How often does anyone, including family and friends, threaten, hurt, talk down, insult, scream or yell at you?
Admitting Caregivers Can’t Do It Alone
The study questions go on a total of 26 questions asking about difficulty paying bills, finding or keeping a job, having someone available to help you, feeling lonely or isolated, using substances to cope with stress, experiencing down, depressed or helpless, or having any disability.
Family caregivers and persons who need care experience one or many of these items in CMS’s health-related social needs screening tool. You might have been surprised or embarrassed to answer if you have been asked these questions without any explanation from a doctor or a social worker.
The goal of asking these questions for organizations in this 5-year study was to connect people in need with community resources that can help.
Social Program Participation
Let’s talk about the challenges of participating in health-related social needs programs.
- The first challenge is being a patient in a healthcare or social care system offering the program.
- The second gap is trust. Do caregivers and sick family members trust the doctor or healthcare worker enough to participate in the survey and honestly answer the questions?
I imagine it difficult to feel vulnerable and say, “No, I don’t have enough money to buy food, or my job is in jeopardy, or I use drugs because it’s the only way I can deal with the stress of caregiving, and yes, I feel lonely, depressed, and isolated.”
I don’t know a person who doesn’t want to appear capable, competent, and self-sufficient. But the reality is many people can benefit from support to be in a better position to help themselves and family members.
And many family caregivers, if they knew programs like this existed, would be at least curious to learn more.
Steps to Receive Support
The next challenge for participating in these programs is giving consent. Consent means you agree to have your personal information and the health information of the person you care for shared with others who have services and can help.
So this means that in addition to your doctor or the community organization where healthcare is received, people from other organizations you don’t know may contact you. You will likely have to sign a paper form or give permission through an online website or portal.
If you are uncomfortable with this, ask the circumstances you can remove consent. For example, let’s say someone from an organization connects to you, and you don’t like them for any reason.
Ask how you remove access from having that person contact you again. In most cases, consent or permission can be revoked or canceled.
So the goal of health-related social needs programs is to build a bridge between medical and community care. The healthcare organization where you or an aging parent receives care may have some programs but may not yet promote them.
If you are managing care for a sick family member, start asking if the health and social care agencies you work with have programs that address—and use this terminology—health-related social needs or social determinants of health programs.
In addition to the organizations in this CMS accountable health communities model program, there are organizations all over the United States paying more attention to these issues.
Caring for Sick Family Members Extends Beyond Health
Why pay attention? Because, as a caregiver, you know firsthand that managing care for a sick family member extends far beyond only paying attention to health.
All of the stressors you experience affect you physically and mentally and will eventually affect your health if you continue to want to do it all alone. While many caregivers feel they are alone, there is a lot of hope, help, and support to be found.
If you are hesitant to ask healthcare or community organizations for support, think about the benefits and how knowing about programs can make your life easier.
In the meantime, while you are thinking about seeking community support, visit my website pameladwilson.com.
Also, check out my online open webinar course called support Caring for Aging Parents, my caregiver blog, over 150 episodes of this podcast, and many other resources on my website.
Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.
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