I hate my mother with dementia, what’s wrong?

Introduction: Dementia, a progressive neurodegenerative condition marked by cognitive deterioration and behavioral changes, poses significant challenges not only to individuals diagnosed with the disorder but also to their caregivers. The caregiving role is frequently accompanied by substantial emotional, physical, and psychological strain. Among the complex emotions caregivers may confront are frustration, resentment, and even animosity toward the individual with dementia, which can give rise to guilt and confusion. This seemingly paradoxical emotional response—where caregiving and compassion coexist with negative sentiments—raises essential questions: What are the underlying factors driving these emotions? Do they stem from caregiver burnout, unmet psychological needs, or unresolved conflicts within the pre-dementia relationship? From a neurological standpoint, the altered personality and behavior of the affected individual can evoke a profound sense of grief over the “loss” of the loved one as they were known before the onset of dementia. Psychological theories, on the other hand, posit that unmet expectations and sustained stress can exacerbate these negative emotional responses. A comprehensive understanding of this complex issue requires an in-depth analysis of caregiver mental health, the shifting dynamics of relationships influenced by dementia, and the impact of external support systems. Such an examination could inform the development of targeted interventions that alleviate caregiver distress and enhance the well-being of both caregivers and individuals with dementia. 

What is dementia?

Dementia is often incorrectly referred to as “senility” or “senile dementia,” which reflects the formerly widespread but incorrect belief that serious mental decline is a normal part of aging. Dementia is not a single disease. It’s an overall term to describe a collection of symptoms that one may experience if they are living with a variety of diseases, including Alzheimer’s disease. Diseases grouped under the general term “dementia” are caused by abnormal brain changes. Dementia symptoms trigger a decline in thinking skills, also known as cognitive abilities, severe enough to impair daily life and independent function. They also affect behavior, feelings and relationships. (4)

Several underlying conditions are known to contribute to the development of dementia, with the most prevalent being Alzheimer’s disease, which accounts for the majority of cases. Vascular dementia, another common form, typically arises from chronic conditions such as prolonged high blood pressure, atherosclerosis, or a history of multiple small strokes, which can impair blood flow to the brain. Stroke-related dementia is the second most frequent cause of cognitive decline. Additionally, individuals with Parkinson’s disease often develop dementia as part of the disease progression.

Dementia with Lewy bodies, associated with the accumulation of abnormal protein deposits, primarily affects memory and cognition, including short-term memory. Frontotemporal dementia, a category encompassing several related disorders, such as Pick’s disease, is also a significant cause of dementia, particularly affecting personality and behavior. Lastly, traumatic brain injuries, especially severe head injuries, may lead to cognitive decline and are recognized as a risk factor for dementia. Does Xanax cause dementia? To date, research has not conclusively established that Xanax or other benzodiazepines cause Alzheimer’s disease or other forms of dementia. However, these medications’ potential to affect cognitive function, particularly with long-term use, remains a subject of ongoing study and debate.

Clinical Neuropsychology is a specialty field within clinical psychology, dedicated to understanding the relationships between brain and behavior. Clinical neuropsychological testing is a valuable tool for diagnosing dementia by identifying patterns of impairment in the brain and behavior. Also, Behavioral neurology, a subspecialty of neurology focuses on clinical and pathological dysfunction of higher mental functions, especially cognitive dysfunction (such as memory problems or aphasias) but also affective and behavioral aspects of brain function (such as behavioral problems in dementia patients). (5,6,8)

The Common Effects of Dementia

Dementia significantly impacts familial dynamics, often leading to a shift in roles and responsibilities within the household. Caregivers may find themselves transitioning from being dependents to primary providers of care for a parent who was once a source of guidance and support. This reversal of roles can present considerable emotional challenges for family members, manifesting as feelings of guilt, frustration, or sadness. Such experiences are particularly pronounced when caregivers perceive rejection or hostility from the affected individual, a common scenario that might evoke thoughts such as, “My parent has dementia and I hate them.”

These emotional responses are a natural part of the caregiving process. Seeking support from others who share similar experiences has been shown to foster coping mechanisms and emotional resilience, ultimately aiding caregivers in navigating the complexities of dementia care. (21)

Examples of the experience of people with the problem of parental dementia

• My mom has dementia. This disease is relentless, dementia took my mom. My mother with dementia is driving me insane. Under my breath, I said, “I hate you” to her—a phrase I’ve never imagined uttering in my life. It’s heartbreaking to see her transformation. She was once sharp, organized, and on top of every detail, teaching me everything I needed to navigate life. Now, it’s like our roles have reversed. She’s become a shadow of her former self, constantly repeating things, sometimes inventing stories, and disrupting my sleep by knocking on my door at all hours of the night. My mom with dementia often confuses past memories with the present, creating moments that are both touching and challenging. I know if she were aware of her current state, she would be devastated. While she’s still kind at heart, the situation has become overwhelming. I recently had to physically take important documents from her because she wouldn’t let go. I’m doing my best to stay patient, but it’s so difficult. I don’t understand why some people call caregiving rewarding—it doesn’t feel that way to me. This responsibility fell to me because there’s no other family nearby, and I’m feeling stuck.
• My mum has dementia. I miss the person my mom used to be. Now, she feels like a shadow of herself, with no spark or personality left. My mom with dementia has been struggling to remember even the simplest details of her daily life. Every day, I tell myself I’ll be more patient, loving, and kind—I’ll make an effort to connect with her more. But instead, I go through the motions like a robot: preparing her meals, dressing her, and then leaving her alone for most of the day. The guilt weighs heavily on me. My mom has dementia and is mean she struggles to hear, so I have to raise my voice, which leaves me feeling physically and emotionally drained. I can’t reason with her; she says things that make no sense and doesn’t seem to understand what’s right in front of her. It’s heartbreaking and exhausting every day. I miss the vibrant, beautiful mom I once knew—the one who was everything I aspired to be. Now, she’s often disheveled, quiet except for asking for food or drink, and it’s so hard to see her this way. Meanwhile, I carry this bitterness, as my dad would say, like a chip on my shoulder.
• My mom has dementia. This disease is merciless, slowly erasing the woman I once knew. She was always the strongest, most vibrant person in my life—full of wisdom and love, guiding me with an unwavering spirit. Now, she’s lost in a fog of confusion, grasping at memories that slip through her fingers like water. Every day is an emotional challenge; I find myself repeating things over and over, hoping for recognition that never comes. Sometimes, she looks at me with eyes that seem to search for an answer, and I can see the brief flicker of understanding before it vanishes again. I never thought I’d hear myself snap at her, tired and exasperated, when she forgets even the simplest details. She wakes in the night, disoriented and calling for people who no longer exist, and I struggle to comfort her while holding back tears. It’s hard to reconcile the woman she is now with the mother who once took care of me so fiercely. I know she’d be heartbroken if she could see what’s happening. Even in these moments of sadness, I remind myself that she’s still my mom at her core—just lost, and I’m the one left trying to find her.

Anger is a multifaceted and often misunderstood emotion in caregiving. Understanding underlying mechanisms is essential for caregivers to develop healthier coping strategies and seek appropriate support, ultimately improving both their well-being and the quality of care provided to their loved ones.

To learn more about dementia, watch the video below:

Why am I angry at my parents with dementia?

The physical and cognitive decline of parents can be an emotionally distressing experience, as it not only evokes feelings of loss but also forces individuals to confront their own mortality and anxieties about the future. During such challenging times, it is essential to differentiate between frustration stemming from a parent’s behavior and emotional responses triggered by personal sadness and fear. One effective approach is to identify the specific triggers of impatience, as it is natural to feel anger, but the key is in managing this emotion constructively. A crucial consideration in managing frustration is recognizing that individuals with dementia are highly sensitive to the moods of their caregivers. Negative emotional states, such as anger or fear, can significantly disrupt the caregiving dynamic, undermining the trust that is fundamental to the relationship between caregiver and care recipient. It is important, therefore, for caregivers to remain calm, as a fearful or anxious reaction can negatively impact both the quality of care and the well-being of the person with dementia. Understanding anger in caregiving: (7,3,4,5)

• Frustration and Cognitive Dissonance

The reversal of traditional family roles, where adult children assume caregiving responsibilities, can lead to significant frustration. This disruption of the parent-child dynamic often provokes anger, as caregivers struggle to adjust to their new roles. Additionally, cognitive dissonance arises when the long-held perception of parents as strong, dependable figures clashes with their current state of vulnerability. This emotional discomfort further amplifies feelings of anger, creating internal conflict for caregivers.

• Emotional Regulation and Chronic Stress

Caregiving responsibilities frequently expose individuals to chronic stress, which adversely affects the brain’s ability to regulate emotions. The prefrontal cortex, responsible for emotional regulation, can become overwhelmed under prolonged stress. When this occurs, the amygdala, the brain region associated with anger and fear, tends to dominate emotional responses. Furthermore, sleep deprivation—a common issue among caregivers—exacerbates emotional dysregulation, making it more challenging to remain calm and composed in stressful situations.

• Processing Loss and Grief

Caregivers often experience anticipatory grief, mourning the gradual loss of their parents as they once knew them, even while they remain physically present. Anger is a natural component of the grieving process and may be directed at the parent due to difficulties reconciling changes in their behavior, personality, or abilities. This emotional turmoil reflects the caregiver’s struggle to process profound feelings of loss and adjustment.

• Social and Cognitive Demands

The cognitive and behavioral changes associated with conditions such as dementia place significant demands on caregivers. Repetitive questions, unpredictable actions, and resistance to care often tax the caregiver’s executive functions, including planning, problem-solving, and self-control. The mismatch between the caregiver’s efforts and the patient’s responses can foster feelings of helplessness, intensifying frustration and anger.

• Empathy Fatigue and Emotional Strain

Continuous caregiving can lead to empathy fatigue, a state in which the caregiver’s ability to empathize diminishes due to prolonged emotional strain. This phenomenon often manifests as irritability or resentment toward the care recipient. The cumulative effect of emotional exhaustion contributes to an overall reduction in the caregiver’s capacity to provide compassionate care.

How to tell a parent they have dementia

The process of revealing a dementia or Alzheimer’s diagnosis to a parent can be emotionally charged and complex. In some cases, adult children may learn of the diagnosis from a healthcare professional prior to the parent being aware of their condition. This situation is challenging and fraught with anxiety, as many children grapple with the question of how to break such difficult news. Nonetheless, transparency and the right to be informed are fundamental rights of the parent, and addressing the situation is imperative for their understanding and future planning. Receiving a diagnosis of dementia can create immediate psychological and practical challenges for both the parent and their adult child. Coping with the implications requires careful planning and an empathetic approach to the conversation. Below, we discuss key strategies to facilitate a productive and positive dialogue.

1. Identify the Most Suitable Individual to Initiate the Conversation

It is essential to consider who should lead the conversation or be present during it. In some cases, a close friend or trusted family member who shares a positive relationship with the parent may be the ideal person to support the discussion. This individual’s presence can foster trust and comfort, which can contribute to a more receptive environment.

2. Address the Topic Promptly

Delaying uncomfortable conversations may exacerbate the situation. Once a dementia diagnosis has been confirmed, it is crucial to address it without undue postponement. Dementia is a progressive condition, and timely communication can help both the parent and the family prepare for the evolving challenges ahead.

3. Select an Appropriate Environment

Choosing a quiet and calm setting for the discussion is vital. External noise, background music, and interruptions can heighten anxiety and impair understanding. A serene environment minimizes distractions and allows for clear, unhurried dialogue. Speaking at a moderate pace, using clear and simple language, and pausing periodically can provide the parent with time to process the information.

4. Adapt Expectations and Communication Style

Following a diagnosis, interactions will require adjustments to better suit the parent’s evolving cognitive abilities. The previous dynamics of spontaneous and witty exchanges may no longer be feasible. To navigate this transition effectively, focus on the clarity of communication and maintaining the parent’s attention. Accepting these changes and realigning expectations will support both the caregiver and the parent in fostering moments of connection, despite the difficulties. (20,19,18)

How do I deal with my mother who has dementia?

Enhancing Communication Skills

One of the critical aspects of caregiving for a parent with dementia involves adapting communication techniques to promote understanding and emotional connection. Individuals with dementia often struggle with word recall, maintaining the flow of conversation, or experiencing confusion and agitation. Caregivers can implement strategies to facilitate effective communication and create a supportive environment.

1. Promote a Positive Interaction Atmosphere: Non-verbal cues such as facial expressions, tone of voice, and body language play an essential role in creating an environment where the individual feels reassured and included.
2. Minimize Environmental Distractions: To foster focus and engagement, it is beneficial for caregivers to reduce background noise, such as turning off the television or radio. Maintaining eye contact and sitting at the same level as the individual can also improve the interaction.
3. Use Clear and Calm Speech: Simplifying language, speaking at a moderate pace, and avoiding high-pitched or overly loud tones can help make conversations easier for the individual to follow.
4. Employ Redirection Techniques: When conversations become overwhelming, caregivers can redirect the individual’s attention to a different topic or activity to alleviate distress.
5. Reminisce About Positive Memories: Although individuals with dementia may have difficulty remembering the start of a conversation, they are often capable of recalling and engaging in discussions about fond memories. This can uplift their spirits and create a sense of continuity.
6. Incorporate Humor: Using humor strategically can help lighten the mood and create shared moments of joy, contributing to a positive caregiving experience.

Managing Frustration and Maintaining Emotional Balance

The role of a caregiver demands flexibility, resilience, and patience. Feelings of frustration are natural; however, prolonged frustration can impact both the caregiver’s mental health and the quality of care provided. It is essential to recognize the signs of frustration and take proactive steps to manage these emotions effectively.

1. Identify Early Indicators of Frustration: Physical signs such as shortness of breath, headaches, changes in eating patterns, or increased alcohol consumption can signal that frustration is building.
2. Engage in Calming Practices: Caregivers can take brief breaks from the situation, practice deep breathing exercises, meditate, take a warm bath, or listen to calming music to reduce physical tension and regain composure.
3. Acknowledge Negative Thought Patterns: Recognizing cognitive distortions, such as overgeneralization, personalization, or focusing solely on negative aspects, can help caregivers shift to a more balanced and compassionate perspective.
4. Communicate Needs Clearly and Assertively: Frustration often arises from an inability to express personal needs and boundaries. By articulating these feelings calmly and assertively—without placing blame—caregivers can maintain healthy boundaries and prevent resentment.

How to talk to a parent with dementia

Dementia and Alzheimer’s disease significantly impair an individual’s cognitive functions, particularly their ability to reason, articulate thoughts, and express emotions. This can create barriers to effective communication, leading to frustration or distress for both the affected individuals and their caregivers. Understanding and implementing communication strategies is vital to fostering positive interactions and ensuring that the affected individuals feel respected and supported.

Approaches to Supportive Communication

• Patience and Active Listening

Ensuring that the individual feels heard and understood is fundamental. Caregivers should exhibit patience, allowing ample time for the individual to express themselves. Avoiding interruptions and showing genuine interest in their words can mitigate feelings of frustration and promote a sense of security.

• Reassurance and Emotional Comfort

Communicating with a person with dementia or Alzheimer’s should be a shared experience among family members. The individual needs to feel that they are being spoken with rather than at. Providing comfort and reassurance can help mitigate feelings of isolation or distress.

• Avoiding Criticism and Correction

Correcting or criticizing an individual’s statements is counterproductive and can heighten anxiety. Instead, caregivers should focus on interpreting the underlying meaning of what is being expressed. If necessary, repeating the person’s words to confirm understanding can prevent miscommunication.

• Minimizing Arguments and Conflicts

In situations where disagreements arise, it is essential to refrain from engaging in arguments. Arguing often escalates stress and agitation, undermining the caregiver’s ability to maintain a calm and supportive environment. Instead, it is more effective to validate their emotional experience without necessarily agreeing with the content.

• Supporting Word Retrieval

When individuals struggle to find the correct words, caregivers can gently offer suggestions or fill in missing terms to facilitate conversation. However, it is important to do so without making the person feel pressured or frustrated.

Enhancing Communication through Non-Verbal Methods

• Utilizing Gestures and Visual Aids

When verbal communication becomes challenging, non-verbal cues such as gestures, pointing, or the use of visual aids can be instrumental. Visual prompts, such as pictures or written notes, can help convey messages more effectively.

• Minimizing Environmental Distractions

Care settings should be arranged to minimize sensory overload. Quiet, organized spaces can help individuals focus and process information more efficiently. Reducing background noise and excessive visual stimuli supports cognitive function and decreases stress.

Tailoring Language for Clarity

• Simplifying Language

Using straightforward language and short, clear sentences can make communication more accessible. Caregivers should avoid long-winded explanations and instead present information in bite-sized pieces that are easier to follow.

• Adjusting Speaking Pace and Tone

Speaking slowly and clearly, with a calm and lower-pitched tone, promotes a sense of reassurance. Caregivers should maintain a relaxed demeanor, which can help reduce anxiety.

• Allowing Processing Time

It is crucial to be patient and wait for the individual to process information and respond. Avoid the temptation to fill silence with additional statements, as this can overwhelm the person and hinder their response time.

Practical Tips for Communication Management

• Repetition and Reinforcement

Repeating questions or statements in simplified terms can aid in comprehension and response. This approach is particularly helpful if an individual does not reply initially or seems confused.

• Transforming Questions into Statements

To avoid overwhelming the person, caregivers can rephrase questions as statements or provide answers directly. For instance, instead of asking, “Do you need to use the bathroom?” one could simply say, “The bathroom is right here.”

• Avoiding Ambiguous Language

Clear, literal language helps prevent misunderstandings. Caregivers should refrain from using euphemisms or figurative expressions that may be interpreted literally.

• Positive Redirection

When redirecting attention or guiding behavior, positive phrasing is more effective than negative commands. For example, replacing “Don’t go there” with “Let’s go here” can shift focus in a supportive manner.

• Visual Cues for Clarity

In tasks that require action, caregivers should use visual cues such as pointing to or touching objects to reinforce verbal instructions.

• Limiting Quizzing and Memory Checks

Frequently quizzing a loved one to assess their memory can increase stress and anxiety. Instead, caregivers should share their own memories without expecting the person to recall specific details, thus fostering a relaxed environment.

• Written Reminders

When individuals can read and comprehend, written notes can serve as helpful prompts. These notes should be brief, clear, and straightforward.

• Upholding Dignity and Respect

Maintaining an attitude of respect and treating the individual as capable of understanding more than they may express is essential. Caregivers should remain positive and mindful of their own demeanor to reinforce a sense of dignity in their interactions. (15,16,17,11,20,21)

Join us for an inspiring conversation from life partners on a shared dementia journey, Leonard Chayrez and Mark Garrity.

Conclusion

The feelings of anger, frustration, or resentment towards a mom with dementia can be complex and emotionally challenging. Dementia is a neurodegenerative condition that often alters personality, behavior, and cognitive abilities, leading to significant changes in how a person interacts with others. Caregivers may experience feelings of grief, loss, and exhaustion as they cope with the profound transformation of a loved one, which can sometimes lead to conflicting emotions, including resentment. These feelings are not uncommon and can stem from the stress and burden of caregiving, a sense of losing the person they once knew, and the emotional toll of watching someone deteriorate. It’s important to recognize that such feelings do not imply a lack of love or care, but rather reflect the complex psychological and emotional dynamics of caregiving in the context of a progressive and often overwhelming illness. Seeking support from professionals, such as counselors or support groups for caregivers, can be crucial in managing these emotions and improving overall well-being.

Frequently Asked Questions

Frequently Asked Questions about parents with dementia

How long will my mother live with dementia?

Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer’s live for longer, sometimes for 15 or even 20 years.

How do I know what stage of dementia my mom is in?

If you aren’t sure which stage of dementia, you or your loved one are in right now, take an online Alzheimer’s test. This can help pinpoint an individual’s symptoms and stage.

Do I tell my mom she has dementia?

In most cases, we’d recommend that you do tell your loved one about their diagnosis. But if they’ve made it clear that they don’t want to know, that’s their right.

Can you visit a dementia patient too much?

While frequent visits can have many positive effects, it’s also important to recognize and address potential drawbacks. Those with dementia may become overwhelmed or agitated if there are too many visitors or activities happening at once.

Reference:

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