Every caregiver has a story. Below, we include links to several interviews of dementia caregivers about their personal care related experiences, and concerns and observations. These provide multiple points of view and multiple experiences of dementia care.*
- A daughter describes care for her fully dependent father. Includes home care, hospitals, dilemmas, and challenges.
- A daughter-in-law describes the difficulties and heartbreak of care for her bedridden mother-in-law.
- Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia.
- A daughter, solo caregiver of a father with dementia, struggles to handle caregiving, financial problems, isolation, problems in her marriage, and an unsupportive brother.
- My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver.
- She would simply hold on to me for support: a husband cares for a wife with dementia.
- A dementia caregiver shares her story and her caregiver wishlist. She suggests how volunteers and NGOs can improve awareness and caregiver support.
- A caregiver who lives in the USA but frequently visits India to help in caregiving, describes how she and her siblings coordinate caregiving.
- Caregiver copes with the many medical problems of a fully dependent patient.
- A family that cared for a dementia patient still sees the patient’s changed behavior as meanness.
- A dementia patient accuses his daughter of attempting murder. The daughter describes care challenges.
- A niece realizes her aunt may have dementia. The family sets up a suitable care environment.
- A primary caregiver’s husband suggests tips to support dementia caregivers.
- Siblings arrange remote care for mother in another city.
- A son and his siblings put systems in place to be present for the dementia care.
- An elderly caregiver looking after husband alone.
- A doctor unprepared for her grandmother’s dementia care .
- A son watches his mother care for a father with Alzheimer’s.
- A remote caregiver describes family conflicts over patient care in India.
- A teenager’s care for a mother with early-onset Alzheimer’s.
A daughter describes care for her fully dependent father. Includes home care, hospitals, dilemmas, and challenges.
Vijaya, a Mumbai-based qualified accountant, set aside her career for some years to care for her father, a dementia patient. In this interview, read Vijaya’s description of the final months of her father’s life and how she and her sister cared for their father as his dependence increased. The interview includes descriptions of hospital visits, difficult decisions, problems handling nurses, and work involved in home care. Read about the tender moments she shared with the father in spite of his inability to speak. Read the interview here: Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates.
A daughter-in-law describes the challenges and heartbreak of care for a bedridden mother-in-law.
In this interview, read about how Neena, a chartered accountant who left her professional work to look after her mother-in-law, faced difficulties and heartbreak of home care of a bedridden patient with multiple medical problems. Read how Ma became bedridden and how they set up their home for complex nursing care, the challenges faced, like Ma’s pain and unhealed wounds, and the occasional incidents when Ma communicated and connected with them, and how difficult it was to see Ma struggle. Read the interview here: When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law.
Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia.
Mala’s family got the diagnosis of her mother’s Alzheimer’s Disease only after years of watching the mother’s slowly-increasing forgetfulness. Her father, the primary caregiver, refused help from his children. Read Mala’s description going down memory lane to recall the early symptoms, the diagnosis and treatment, the family’s coordination for the care, and Mala’s own hope and guilt. Read the interview here: Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia.
A daughter, solo caregiver of a father with dementia, struggles to handle caregiving, financial problems, isolation, problems in her marriage, and an unsupportive brother.
In this interview, Hyderabad-based Ritika has described her care journey as a 48-year old solo caregiver for her 80-year old father, while her brother and sister-in-law lived in Jammu and her husband (armed forces) was in another city. Ritika entered the solo caregiver situation without realizing it. This happened through a series of steps forced by misunderstandings caused by her father’s behavior and her brother’s response to them. Ritika has described how she was handling the caregiving alone for three years while also having to earn money, and her emotional and physical isolation, and apprehension that her marriage may not survive her prolonged absence from her husband’s home. Read about the extreme financial hardship and emotional setbacks she faced. In the interview she has explained her attempt to find her balance and make the best of her situation, sharing how the last three high-stress years tested every relationship. Read the detailed interview here: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts.
My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver.
In this interview, Nadira, a highly-reputed consultant, has talked about how she took a break from her professional work to live in India and care for her 80+ mother (Alzheimer’s). The progression of her mother’s illness reflected in behavior changes. The family took time to understand that these changes were different compared to the earlier “difficult behavior” displayed by her mother. The interview describes how Nadira educated herself on the condition and developed the patience, love, and empathy she needs to care for her mother. Read the interview here: My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver.
She would simply hold on to me for support: a husband cares for a wife with dementia.
Ramana Rajgopaul was a successful professional manager. He gave up his lucrative career to care for his wife after she had multiple cerebral and cardiac infarcts. His wife has since passed away. In this interview, he described his experiences and emotions as his wife’s caregiver. Caregiving made him a different person, and he tried to keep his wife healthy and happy and sahred shared tender moments with her. Read the interview here: She would simply hold on to me for support: a husband cares for a wife with dementia.
A dementia caregiver shares her story and her caregiver wishlist. She suggests how volunteers and NGOs can improve awareness and caregiver support.
This interview with Kalpana Malani, then a Mumbai resident in her mid-fifties, describes how she cared for a mother with dementia, balancing this responsibility along with her other family responsibilities and her retail business. In addition to her description of caregiving situation and problems, read her wish-list as a caregiver. Read the interview here: A dementia caregiver shares her story and her caregiver wishlist.
A caregiver who lives in the USA but frequently visits India to help in caregiving, describes how she and her siblings coordinate caregiving.
When US-based Sudha’s father developed dementia, she started spending several months a year living in Noida to help her mother care for her father. In this interview, read Sudha’s description of how she and her siblings managed long-distance care using frequent phone calls and visits, using technology to streamline the care. Also, how Sudha and her siblings had differing approaches towards care, and her thoughts on these mismatches. Read the interview here: Long distance caregiving: a caregiver describes the challenges and her approach.
Caregiver copes with the many medical problems of a fully dependent patient.
This interview is with Neena, chartered accountant with 22 years experience who quit work to manage care for her mother-in-law, who is dependent for all activities. read about Neena’s caregiving situation and the difficulties. Read the interview here: Caregiving challenges, trained ayahs, depression: a caregiver’s story.
A family that cared for a dementia patient still sees the patient’s changed behavior as meanness.
Rukmini’s grandmother was diagnosed with dementia. But the family ignored the diagnosis and treated her as a stubborn and inconsiderate old woman. In this interview, read how Rukmini’s family’s denial about dementia did not end even years after the grandmother’s death. Read the interview here: A family’s denial about a dementia diagnosis.
A dementia patient accuses his daughter of attempting murder: a daughter describes care challenges.
Even after Nayantara’s father was diagnosed with dementia, het family members accused her of exaggerating and claimed she is after his money. In this interview, fread Nayantara’s description of the challenges of her father’s behavior. Read the interview here: A daughter describes her father’s dementia behavior challenges.
A niece realizes her aunt may have dementia. The family sets up a suitable care environment.
When her 83 year old aunt started behaving strangely, Bharathi realized that she could be having dementia. Bharathi shared this with the family by providing them literature on dementia. The family then consulted doctors and obtained a diagnosis. They adjusted their lives around the aunt’s dementia. Read the interview here: A family recognizes dementia and adjusts for it.
A primary caregiver’s husband suggests tips to support dementia caregivers.
When Rajesh’s mother-in-law developed dementia, his wife became the primary caregiver. In this interview, Rajesh has shared how he didn’t support his wife in the initial days because he did not understand dementia and had a wrong attitude. The interview includes his suggestions regarding practical ways to support primary caregivers. Read the interview here: Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared.
Siblings arrange remote care for mother in another city.
David’s mother suffered from Alzheimer’s Disease. Neither David nor his siblings lived in her city, so they had to manage the care from a distance.Read how David and family used a remote caregiving arrangement and the problems faced. Read the interview here: Remote caregiving: an arrangement, and issues faced.
A son and his siblings put systems in place to be present for the dementia care.
This is a follow-up interview of Saraswathi’s case below. It was conducted a few weeks later. In this initerview, Saraswathi’s son Ranganath has described the changes the family made to support their father’s care, and how Ranganath and his siblings took turns to be present in Bangalore, and also used respite care, day care, and attendants, to ensure their mother was not alone in her caregiving. Read the interview here: Children of an elderly caregiver make arrangements and take turns to support the dementia care.
An elderly caregiver looking after husband alone.
This interview of Bangalore-based Saraswathi Subramoney was done when she, then 78 years old, was looking after her 86-year old husband (Parkinsonian dementia). The interview describes the overwhelming nature of being an elderly caregiver even as her children, living in other cities, were trying to make arrangements to support her. Read the interview here: Elderly caregiver overwhelmed caring for her husband who has Parkinsonian dementia].
A doctor unprepared for her grandmother’s dementia care.
In this interview, Vidya, a doctor, shared her personal story regarding her grandmother who started showing dementia symptoms after a stroke. Vidya’s mother and aunt took turns as the primary caregiver, and Vidya supported them. None of them had known what to expect. They were not prepared for caregiving. Read the interview here: A family struggles to handle dementia care.
A son watches his mother care for a father with Alzheimer’s.
In this interview, Varun has described the situation and care of his father (Alzheimer’s Disease). For some years, when his parents lived with him, Varun was helping his mother in dementia care. It affected all spheres of his life. later, his mother took his father to their hometown because she wanted her relatives and friends around them. Read the interview here: Father’s Alzheimer’s changes a son’s life .
A remote caregiver describes family conflicts over patient care in India.
In his interview, Sarla, settled in the USA with her husband, described the care of her mother-in-law, an Alzheimer’s patient living in India, who had passed away shortly before this interview. The interview describes how the disease got worse, what care involved, and complications that happened because of the family’s lack of communication, resentments, and conflicts. Read the interview here: Overseas caregiving and family conflicts over dementia care.
A teenager’s care for a mother with early-onset Alzheimer’s.
Ekta Hattangady was 15 years old when her mother (then 45 years old) was diagnosed with early-onset Alzheimer’s. Over the next 4 years, young Ekta juggled caregiving and studies. She faced the unusual situation as best as she could. This interview shares her experiences of those unsettling years. Read the interview: A case of early-onset Alzheimer’s Disease.
Caregiver stories shared through comments on the site.
Below are links to some personal stories that caregivers share in their comments on existing interviews. Topics they talk about include caregiver guilt, sharing work and responsibility with siblings, fatigue, and helping children adjust to dementia in the family.*
- Children adjusting to dementia: A father helps his daughter accept the grandmother’s behavior.
- Overwhelming care for a dependent father: A daughter describes the amount of care for her wheel-chair bound father. She also describes the dilemma of deciding whether to move in closer to a sibling to manage the work.
- Caregiver guilt: A caregiver talks of her problems balancing her mother’s care with other concerns like her husband’s cancer. She describes her stress, guilt and regret.
*Note: The situations and experiences described are specific to each interviewee or commenter, and are not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every person with dementia, every family is different, and so is their experience. Though many of these narratives may be several years old, the caregiving experience and perspective they share remain directly pertinent and useful today. However, specific details they mention — services, costs, medical practices — may no longer be current.
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