Being Realistic About a Parent’s Health
The Caring Generation® – Episode 140 June 1, 2022. Being realistic about a parent’s health can be emotionally challenging. Caregiving expert, Pamela D Wilson, shares insights into why elderly parents might be in denial about health. Learn why family members may distance themselves from care situations and the effects of avoiding health conversations on family caregivers.
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Caregivers are often so busy doing that being realistic about a parent’s health takes a back seat. Often, fear gets in the way of being comfortable initiating conversations with aging parents about their health. Or if we are the ones with health issues, anxiety or hesitation may exist in sharing this information with a spouse or an adult child.
Being Realistic About a Parent’s Health
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Why is Accepting Reality So Hard?
Avoiding discussions about a loved one’s health can be driven by denial. As care situations advance the ability to openly discuss and plan for concerns becomes more important. Identifying answers to these three questions may help you and your loved ones accept health concerns and thoughtfully plan for the future.
1) What are the signs that caregivers and their loved ones may be in denial about health concerns?
2) What is the effect on family caregivers when aging parents are reluctant to address problems?
3) How can caregivers and parents move past hesitance to address emotions that hold them back from making progress?
Why Health Concerns are Difficult to Discuss
Let’s begin by talking about health concerns that are difficult to discuss. The first is memory loss, known by the words dementia, and Alzheimer’s, a brain injury, or memory loss resulting from a diagnosis of heart disease, a stroke, Parkinson’s, or some other neurologic condition.
When signs of memory loss occur, caregivers and other family members may ignore or not notice early signs that begin to show as early as 10 to 20 years before a formal diagnosis. Adult children can be in denial about the risks of parents continuing to drive a car or safety risks related to living alone.
Related to other health diagnoses, many believe that getting old and sick is part of life. This aspect of life is partially a choice that one makes. Some think that family genetics overrides any health or lifestyle choices that are made.
This is not accurate. I believe that persons with health issues at any age miss out on education and knowledge early in life about actions they can take to be healthy.
Importance of Health Advocacy
Other aspects include learning to advocate with doctors, medical providers, and the healthcare system. Being a healthcare advocate for aging parents requires confidence, knowledge, and persistence.
All health diagnoses have causes that contribute to health challenges and consequences that individuals face daily. For example, many of you see the implications of health problems with your parents who struggle to walk or become quickly tired with physical exertion.
Being realistic about a parent’s health means talking bravely about these concerns, understanding the foundation, and what might happen next.
Ignorance About Health Diagnosis
I watched my mother’s health decline for years, and while I worried about her, I hadn’t the slightest idea of what I should be doing or the underlying causes of her sickness.
My mother was diagnosed with heart disease that eventually led to quadruple bypass surgery when she was 60 years old. When the heart has difficulty pumping blood, and you add a diagnosis of high cholesterol and triglycerides to the mix, the likelihood of blockages in blood vessels and arteries increases which can lead to a stroke.
My mother experienced mini-TIAS or mini-strokes. I watched her briefly fade in and out from conversations but didn’t realize she was having a TIA.
Add to these health issues horrible indigestion and a hiatal hernia that I later learned were caused by years of smoking a pack of cigarettes a day. Smoking also contributed to the severe heart disease that she had, along with the circulatory issues and the mini-strokes.
She acquired hepatitis during the bypass surgery from blood transfusions that were not tested for hepatitis. These issues created the perfect storm that eventually led to a diagnosis of bladder cancer, which led to her death after surgery when her immune system was too weak. She died from sepsis.
To learn more about older adults and the risk of sepsis, listen to Podcast Episode 49 Called What is Guardianship. On this program, I interview Dr. Bernardo Reyes from the Charles E. Schmidt College of Medicine at Florida Atlantic University talks about Sepsis in Older Adults.
Healthcare Providers Don’t Want to Give Bad News
We were the perfect example of a family in denial. Being realistic about a parent’s health was not in our vocabulary because we were naïve and in denial.
We didn’t know what questions to ask. The cardiologist, surgeon, and other specialists gave the hope that we wanted instead of reality checks about the risks of the situation. Or maybe they did, and those conversations went right over my head.
So when we look at being realistic about a parent’s health, the example of not talking about or noticing memory loss and the example of my mother’s life experience are situations that repeatedly happen in families.
We don’t know that we should be having conversations with health professionals about prognosis. Talking about prognosis means discussing the outcome or course of a disease which includes talking about possible treatments and what happens in the future. These discussions are critical but rarely happen when a disease is first diagnosed.
Let’s begin by answering a question that may help identify denial about health concerns in a family.
What are the signs that caregivers and their loved ones may be in denial about health concerns?
There are four questions to ask to identify if you, aging parents, or family members are in denial about a parent’s health, financial or legal planning situation.
1 In your family, who refuses to discuss health concerns?
Is it you, the caregiver, the person with the diagnosis, aging parents, siblings, or someone else? This person may be using denial as a defense mechanism related to fear.
Being realistic about a parent’s health can be a very emotional topic. Especially If the news of a health diagnosis like cancer or Alzheimer’s is a shock. Then you and the family may need time to adjust to being realistic about a parent’s health.
Unfortunately, there also may be times when mom or dad finds ways to justify unhelpful behaviors. Is this happening in your family? For example, dad says, “I’m 90. Even though I have diabetes or heart disease, I will enjoy a Big Mac or a Whopper and fries as often as I want. I have all of these health problems that I’m going to die from anyway. What else do I have to live for?”
If you are a son or daughter in this situation, you may think your father is stubborn. He doesn’t care about his health or the fact that you are the one who will have to pick up the pieces when he has a heart attack or a stroke.
2 Does blame exist for the condition?
In other cases of denial about a parent’s health, blame may be an ongoing discussion. You may hear things like, “why didn’t anyone tell me not to eat a box of cookies every day or that I should exercise.
No one told me I should have gone to the doctor,” and a long list of other excuses or blame for a health concern.
3 Is there justification for self-destructive caregiving behaviors?
Next on the list of being realistic about a parent’s health is justification. How many of you hear or say to yourselves “I don’t have time to exercise?”
Do you continue to smoke cigarettes—even though the doctor told you to stop—because you are stressed. Or you might hear, “I’ve always been overweight. I can’t change now.”
Doing what the doctor recommends can seem like too much trouble and effort if one is set in their ways and adverse to the idea of change.
4 Are decisions put off until tomorrow?
Do parents say, “I’ll think about it tomorrow. I’ll do something about it tomorrow—I promise.” But, nothing ever seems to change.
Progress never happens. Motivation may be lacking, or the reason may be one of the other topics we discussed.
Being realistic about a parent’s health can be even more complicated for a mom or dad with a mental health diagnosis or a related condition who also has memory issues. There is a condition called anosognosia that blocks the mental ability to recognize and accept health conditions.
Anosognosia: A Lack of Insight
To learn more about anosognosia, listen to Podcast Episode 54, Taking Care of Elderly Parents. On this show, I interview Dr. Aninda Acharya about anosognosia.
Anosognosia is a lack of insight into health concerns and safety for persons diagnosed with mental illness, stroke, dementia, or brain injuries.
A lack of insight means that aging parents or spouses with any of these diagnoses may not believe they have the health condition, or they may deny that anything is wrong with them. This means refusing to take medications, being proactive about health, discussing the problem, or planning for future care needs.
This inability to accept information leads to denial and challenges for family caregivers who may be trying to convince a loved one who lacks the mental ability to comprehend the seriousness of the situation. A diagnosis of anosognosia can be very difficult for family caregivers.
Fear of Treatment or the Stigma of a Diagnosis
Being realistic about a parent’s health can be complicated by the fear of treatment or the stigma of a diagnosis. According to the Alzheimer’s Society of the UK, “over half of people fear a dementia diagnosis, 62% think it means life is over.”
This study confirms that 56% of people put off seeking a dementia diagnosis for up to a year or more. Dementia is the most feared health condition in the UK.
Mental health is another diagnosis more frequently in the news. While discussing this topic is more common, some people fear sharing or talking about their diagnosis.
Many older adults have undiagnosed mental health issues because they refuse to see a physician or discuss their condition. The challenges to family caregivers are significant in any situation where denial about a health diagnosis exists, especially if caregivers are also hesitant to initiate conversations.
If you are a caregiver for a loved one diagnosed with dementia and a mental health diagnosis you may struggle to get care from the healthcare system. Shortages exist in the number of geriatric psychiatrists and geriatric pharmacists.
Psychiatric hospitals refuse to admit patients with dementia because of insurance reimbursement refusals. Helping aging parents or a spouse with a combination of these conditions can feel like a struggle.
Insights into the Emotional Aspects of Denial
Let’s return to suggestions for how family caregivers can respond to being realistic about a parent’s health when mom, dad, or siblings may be in denial. Closing the door on discussions about caregiving, health, and other topics negatively affects family caregivers.
Let’s look at the story of a caregiver who is the primary caregiver for a father-in-law. The caregiver is navigating hospice care and doing everything possible to make sure that the dad-in-law is comfortable.
The challenge is that, by all appearances, the caregiver’s wife is refusing to talk about her father’s pending death. She refuses to be involved with caregiving tasks.
If you are the primary caregiver in this situation, you may feel unappreciated for all of your work in caring for an in-law. You may be angry that your wife is acting this way.
There can be so many reasons that adult children want to distance themselves from the death of a parent. From an emotional perspective, adult children may be afraid of watching a parent die.
Family relationships are not perfect. There may be underlying anger, hurt, or problems forgiving a parent for something that happened years ago. So, it’s easier to avoid the situation than to confront feelings or attempt to make amends before someone dies.
Unfortunately, guilt may carry on for years after death because of these unresolved issues. Talking about death, in general, may be emotionally troubling.
Imagine how a dying spouse or elderly parent might feel. They may be angry, afraid, suffering or in pain. Watching a loved one suffer can be emotionally traumatic for a spouse or adult child who feels powerless to change the situation.
These are not easy times. Especially when families rely on hospice workers to make sure loved ones are not suffering as death approaches. Hospice nurses educate families about the dying process, deliver medications, and monitor pain.
Many family members think sudden death would be better than watching a loved one disappear over weeks or months. The living has to find a way of accepting the deaths of those we love and eventually planning for our path to dying.
Dying is About Managing Emotional Responses
Dying is about managing the emotional response to the person who is dying. Being a caregiver during this stage changes from expecting a parent to improve to accepting that a parent’s health will not improve and shifting to the idea of comfort care.
So these are the many reasons why a family member may shut down, refuse to visit, or have difficulty being involved when a loved one is dying. These challenges bring us to the idea of compassion and empathy for anyone in denial.
When an elderly parent or spouse refuses to discuss health or a related topic, the best we can do is to listen, ask questions, and avoid making suggestions. By showing acceptance and understanding of another’s feelings it may be possible to gain trust to move a situation forward.
When any person views interactions as telling, controlling, or intrusive then responses are more likely to be defensive or negative. If you are a caregiver who has attempted to convince a parent to do something you may have noticed resistance if you tried to push conversations forward. Parents have to be ready for these conversations.
Refusals of any type by parents can be frustrating for their caregivers. As the caregiver, accept the fact that you may feel powerless to change the situation while at the same time learning more about how to deal with denial—which may help move the situation forward.
How can caregivers and parents move past hesitance to address emotions that hold them back from making progress?
Let’s look at how to move past hesitation to take action. The first step is to identify fears that exist in any area of life.
For example, maybe you are a caregiver who wants to go to college. But you’re not sure what your area of focus should be or how you will pay for school, or how caring for a grandparent or parent will affect your ability to complete your schoolwork.
So you delay because of not knowing what step to take first. You may not want to burden grandma or mom with the idea of you attending college.
Being realistic about a parent’s health may be the place to begin since this can affect the available time to attend classes. You also might want to think about the negative consequences of not attending college on your ability to build a career and earn income.
Write down how this makes you feel—what worries you, and the challenges you see in caring for aging parents and attending college. By going through these three steps of being realistic, looking at the consequences of not taking action, and examining your feelings, you can gather enough information to talk to parents or grandparents about going to college.
The answers you come up with will be different depending on your age, whether you currently work and are adding college to the mix or whether the person you care for financially supports you.
Complications for Caregivers
As you see, there are many things to consider when making any decision. Middle-age adult children who have their own families, work full time and devote time to caring for aging parents face other struggles. Caring for the caregiver can be a low priority.
Remaining in denial and avoiding discussions can result in more significant risks for health declines, poor mental treatment, and the need for more care for parents. All these affect the lives of family caregivers.
These challenges can seem unfair, yes? When outside circumstances affect your life and how you can plan for your future as a caregiver you may feel as if you can’t move forward.
What is the effect on family caregivers of parents who refuse to accept the consequences of health conditions?
Aging parents who are sick may not realize the trickle-down effect of how their health, good or bad, affects family members. Being realistic about a parent’s health is a family, not an individual, issue. The needs or problems of one person affect another.
Another way to look at this may be to transfer the situation of solving a problem or working on a goal to a work team. A caregiving family can also be considered a team.
The difference is that while denial can exist about a problem at work, others on the team may be motivated to identify solutions to move the issue forward. So a person on a work team may not feel as alone or isolated as a primary caregiver.
But even at work, personal problems or distractions enter the picture. What if you are an employed family caregiver? Do you take your caregiving worries with you to the office?
These mental distractions can detract from your performance on a work team so much that you may think of quitting your job to care for a parent full time. If this is your situation, there are also consequences to consider—loss of income, loss of job skills, difficulty getting a job in the future, where you will live, and if you are married, how this decision will affect your family.
Move Forward by Evaluating the Implications of Choices
There’s no denying that solving problems or being in denial has consequences. The bright spot here is the opportunity to evaluate the implications of the choices that you or others make.
When you arrive at discussions—even though you may not have immediate answers—you are in the stage of moving past denial or being stuck. Having choices to make can make caregivers and elderly parents feel more in control.
As a caregiver, being realistic about a parent’s health is a choice you can make even if your parents refuse to address the topic. Having difficult conversations is necessary. So how do you do this?
- If your parents will allow, attend medical appointments with them.
- Learn as much about their health and what can happen in the future as possible from their doctors.
- Accept that if your parents do nothing to improve their health, they will become sicker and less able to care for themselves.
- Decide how you want to be involved.
Having Conversations to Help Elderly Parents Help Themselves
While you may feel a responsibility and a duty to care for your parents, your parents can choose to cooperate or refuse your help. This is the place where you can set boundaries and discuss consequences.
Here’s an example, “mom or dad, based on what the doctor said, these are the recommendations for you to manage your health. What do you plan to do?”
In this case, your parents exhibit one of the denial behaviors and say, “I don’t know. I’ll think about it tomorrow.” Six weeks pass, and nothing happens.
You can revisit the conversation and ask again. If you receive the same response, you can say, “It seems you’re not interested in doing anything about your health, am I right.” Then listen.
You may find that your parent wants to make a change but doesn’t know how to begin. If so, ask if they want your help, discuss their fears and move forward to identify future consequences.
On the other hand, if parents remain in denial and don’t want help, then don’t allow their indecision to hold you back from choices you want to make in your life.
This may involve setting boundaries to say, “I’m taking a job, going to college, moving 1000 miles away.” If you have siblings, discuss options for care for your parents.
If something happens and parents need help, decide that you will do your best to help them help themselves, and you’ll do what you can. But that a parent receiving help may mean hiring in-home caregivers, moving to a care home, or completing a Medicaid application to obtain care if parent’s don’t have the income to pay for their own care.
Caregivers have to be at peace with their decisions to trade parts of their lives to care for aging parents or spouses. No one can make decisions for you, and it may be challenging to influence the decisions a parent makes.
While many caregivers tell me they didn’t have a choice to become a caregiver – becoming a caregiver is a choice. Caregivers can make better choices by being realistic about a parent’s health and discussing with parents how they want to participate in their care and planning—or not.
Family caregivers who choose to learn about what is involved in caring for aging parents from the beginning of caregiving all the way to the end of life will feel more in control and have greater peace of mind about their participation.
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