A Dementia Caregiver's Dilemma: A Love-Hate But Ultimately Love Story

CNA Insider

27 May 201709:09

Summary

TLDRThe video script narrates a deeply personal journey of a caregiver struggling with the emotional turmoil of their mother's dementia. It captures moments of frustration, guilt, and the transformation of their relationship from a traditional parent-child dynamic to one of mutual support and understanding. The caregiver's participation in a 'Facing Dementia' program highlights the importance of raising awareness to alleviate the loneliness and challenges faced by those caring for loved ones with dementia. The script also touches on the caregiver's emotional growth, learning to express love and care in new ways, and the contemplation of sending the mother to a care home, ultimately deciding against it due to the deep bond and love they share.

Takeaways

😔 The speaker is going through a very difficult time in their life, dealing with a family member's dementia.
🚁 The speaker admits to taking extreme measures, like a chopper, to scare someone, indicating high stress levels.
🧹 The speaker feels pressured to keep the house clean due to the family member's father's impending visit.
😭 The speaker experiences guilt and emotional turmoil, as evidenced by crying and feeling guilty for their actions.
👵 The family member with dementia has started eating very little and sleeping excessively, which is a common symptom of the condition.
🌼 The speaker's mother and her friend Violet used to do weight training together, showing a change in lifestyle due to dementia.
🤔 The speaker reflects on the past, wishing they had spent more time with their mother before her condition worsened.
🏠 The speaker is apprehensive about placing their mother in a new environment, such as a care home, and is unsure how she will react.
🎨 The speaker finds solace in painting, possibly seeking validation from their mother, which is now more important than ever.
💏 The speaker has become more affectionate with their mother since her dementia diagnosis, indicating a change in their relationship dynamics.
🍽️ The mother's appetite has improved, which is a positive sign, and the speaker hopes to remove her feeding tube.

Q & A

What was the individual's initial reaction to the person they were speaking about?
-The individual was extremely frustrated and even took a chopper to scare the person, as they were driving them nuts with their behavior.
What program did the counselor suggest to the individual to get involved in?
-The counselor suggested a program called 'Facing Dementia' to raise awareness and help people in similar situations not feel alone.
When did the individual notice a change in the person's behavior?
-The change in behavior was noticed late last year when the person started eating very little and sleeping a lot, both day and night.
How did the individual react when the person refused to eat or drink?
-The individual got very upset, threw the food on the floor, and left the house, feeling guilty about their reaction afterwards.
What is the significance of the person asking about 'Daddy' and 'Violet'?
-The person asking about 'Daddy' and 'Violet' indicates they are suffering from dementia, as they repeatedly inquire about people who are no longer present.
How did the individual's perception of the person change over time?
-Initially, the individual saw the person as a matriarch who was controlling, but now views them more as a friend, indicating a shift in their relationship dynamic.
What was the individual's emotional state when they returned to the person after leaving the house?
-The individual was crying and felt guilty for their earlier actions, sitting next to the person and being comforted by the maternal instinct.
How does the individual feel about the idea of placing the person in a care home?
-The individual is against the idea of placing the person in a care home, as they cannot bear the thought of the person sitting and staring blankly, which deeply affects them.
What is the significance of the individual's mother's validation in their life?
-The individual values their mother's validation highly, considering it more important than anyone else's, which is evident in their desire for approval through their floral paintings.
How has the individual's way of expressing love towards their mother changed due to her dementia?
-The individual started kissing their mother goodnight, which was not a common expression of love before her dementia, but has become natural and comforting for both of them.
What is the individual's long-term perspective on their relationship with their mother?
-The individual deeply loves their mother and expresses a desire to still be her child in the next life, indicating a strong bond and commitment to their relationship.

Outlines

00:00

😔 Coping with a Loved One's Dementia

The speaker recounts their struggle with a family member's dementia, highlighting the emotional turmoil and the coping mechanisms they've adopted. Initially, they describe a moment of desperation, using a chopper to scare the person to ensure cleanliness due to the family member's deteriorating condition. The speaker then discusses their involvement in a program called 'Facing Dementia' to raise awareness and reduce the feeling of isolation. They share personal anecdotes of the family member's changes in behavior, such as eating and sleeping patterns, and the emotional impact it had on them, including feelings of guilt and frustration. The speaker also reflects on the changing relationship dynamics, from a strict maternal figure to a more amicable friendship, and the challenges of dealing with the family member's confusion and repetitive questions.

05:00

🌼 The Artistic Bond and the Reality of Caregiving

In this paragraph, the speaker delves into the complexities of their relationship with their mother, who suffers from dementia. They mention the mother's refusal to eat and the speaker's reluctance to institutionalize her, despite the emotional toll it takes. The speaker finds solace in their mother's appreciation for their floral paintings, which they create partly for validation. The narrative touches on the evolution of their relationship, from a lack of overt affection to a more natural display of love, including goodnight kisses, as the mother's condition progresses. The speaker also contemplates the idea of sending the mother to a care home but ultimately decides against it, reflecting on the deep bond they share and their commitment to care for her despite the challenges.

Mindmap

Keywords

💡Dementia

Dementia refers to a group of symptoms associated with a decline in cognitive ability severe enough to interfere with daily life. In the video's context, it is a central theme as it affects the mother's behavior and the emotional journey of the caregiver. The script mentions the mother's forgetfulness and the struggles the caregiver faces in dealing with her condition, such as her not recognizing when she has eaten and the constant repetition of questions.

💡Caregiver

A caregiver is someone who provides care and support to a person who cannot fully care for themselves due to illness, disability, or age. In the script, the speaker is the caregiver for their mother with dementia, experiencing the emotional toll and the challenges of caring for a loved one with cognitive decline, such as feeling guilty for their reactions and the contemplation of sending her to a home.

💡Counselor

A counselor is a professional who provides guidance and support to individuals facing personal or psychological challenges. In the video, the counselor introduces the speaker to a program called 'Facing Dementia,' which aims to raise awareness and support those affected by the condition, illustrating the role of professional help in navigating the complexities of dementia care.

💡Validation

Validation is the act of confirming the truth or value of something or someone's feelings and experiences. The script mentions the speaker's desire for their mother's validation, highlighting the emotional significance of approval from a loved one, especially in the context of caregiving and the changing relationship dynamics due to dementia.

💡Maternal Instinct

Maternal instinct refers to the innate, protective feelings a mother has towards her children. The script uses this term to describe the mother's reaction to the caregiver's distress, showing the deep-rooted bond between parent and child and how it persists even in the face of dementia.

💡Abitua

The term 'abitua' seems to be used as a placeholder or a made-up word in the script, possibly representing a person or thing the mother is asking about repeatedly. It illustrates the repetitive questioning characteristic of dementia and the caregiver's frustration and emotional response to it.

💡Weight Training

Weight training is a form of exercise that involves the use of resistance to induce muscular contraction, which builds strength, anaerobic endurance, and size of skeletal muscles. In the script, it is mentioned that the mother and her friend Violet used to do weight training together, indicating a past active lifestyle and a stark contrast to her current state of health.

💡Feeding Tube

A feeding tube is a tube that is inserted through the nose into the stomach to provide nutrition when someone is unable to eat normally. The script mentions the mother's feeding tube, which is a physical manifestation of her condition's severity and the discomfort it causes, as well as the caregiver's hope to remove it.

💡Panak

The term 'panak' is not a standard English word and seems to be used in the script to describe the mother's controlling behavior. It illustrates the caregiver's perception of their mother's personality and the challenges of dealing with her demands and expectations.

💡Floral Painting

Floral painting is a genre of art that focuses on depicting flowers and plants. The script mentions that the mother loves the caregiver's floral paintings, which may serve as a form of communication and connection between them, as well as a source of comfort and validation for the caregiver.

💡Empress

An empress is a female monarch or the wife of an emperor. In the script, the term is used metaphorically to describe the mother's authoritative and commanding presence in the speaker's life, especially during their younger years, and the shift in their relationship dynamics due to her dementia.

Highlights

The speaker took drastic measures to scare someone to get their attention due to feeling overwhelmed.

A counselor recommended the 'Facing Dementia' program to raise awareness and reduce feelings of isolation for caregivers.

The speaker's mother began showing signs of dementia, including eating very little and sleeping excessively.

The speaker had a breaking point where they expressed guilt for their reaction to their mother's condition.

The mother's maternal instinct kicked in, which made the speaker feel even worse about their actions.

The speaker wonders about the extent of their mother's dementia and her repetitive questions about family members.

The speaker reflects on their past relationship with their mother, acknowledging it was not always easy.

The speaker's mother used to be a strong woman, but her condition has changed that perception.

The speaker contemplates the idea of spending more time with their mother to potentially prevent or delay her dementia.

The speaker feels apprehensive about their mother's new environment and how she will react.

The speaker expresses relief at being able to sleep peacefully, albeit only a little, due to their mother's condition.

The speaker's mother refuses to eat, causing concern and frustration for the caregiver.

The speaker is conflicted about the idea of placing their mother in a care home but ultimately decides against it.

The speaker's mother shows signs of happiness and less paranoia, asking for small comforts like food and massages.

The speaker's mother's condition has led them to reconsider showing affection, now kissing her goodnight.

The speaker's mother has started eating more, which is a positive development for her health.

The speaker expresses a deep love for their mother, despite the challenges of their relationship and her condition.

The speaker contemplates the idea of a next life and expresses a desire to still be their mother's child.