This page provides links to some online news reports, articles, and personal essays and blogs that include dementia caregiver stories from India. They provide an insight into real-life experiences of dementia situations here, the challenges faced, what families do, problems due to lack of information and poor awareness in society, and the use or limitations of various support mechanisms, etc. Entries have been selected to provide a cross-section of recent caregiver experiences. They are arranged by their main theme for the convenience of the reader.
- Especially challenging care situation: Early onset dementia.
- Especially challenging care situation: elderly caregiver.
- Decisions and experiences around using care homes, day cares, and attendants.
- “Remote” caregivers, arrangements, and guilt.
- Diverse care situations, symptoms, challenges, introspection, comments.
- Personal blogs that span the entire dementia experience, including joys and sorrows, challenges, loss and bereavement.
Wandering is a major problem faced in dementia situations. The selection below includes situations where the wandering person was located fast, or after a while, or never located. We see the impact of alert persons who help the person return home, and also of situations where no one noticed the person who then died or was never found.
In this section:
- Social media and an alert society and a case where a wanderer came home safe.
- Incidents of wandering where the person did not return.
- Some wandering incidents shared, some other care stories.
- 93 year old person with dementia wanders, is helped and restored to family.
- A father goes missing. The family’s description of their search and eventually finding him after some days.
- A journalist shares personal experiences of her wandering father, and thoughts on this problem.
- A heart-warming incident where a wandering person was restored to his family safely because of alert persons.
- A daughter-in-law describes how her father-in-law wandered away and was found dead five days later.
Alert citizens can spot a wandering person, and alert police and citizens can use social media to spread the news. Families can share news of the person whom they are searching for. The Internet can provide a fast and effective way for helping get the person home if our society is alert and willing to act and use the power of the social networks. Read a story about such action: : Netizens help family in Delhi trace Alzheimer’s patient Opens in new window. A quote:
She was found wandering aimlessly on the road by cops who took her to the police station. A message was flashed to all police stations along with her photograph. It was tweeted by DCP (north) Madhur Verma and police commissioner BS Bassi. Soon the post got about a 100 retweets.
It is important to realize that many of those who wander may never be found. This article shares some such wandering stories from families where the missing persons are still missing, and also interviews and opinions of experts on the situation of awareness and support in India for such problems. . Read the article at: Where’s my home? Opens in new window. A quote:
It’s been over a year, and she’s still not been found. The family has lodged a missing person complaint with the police and scoured almost the whole of Mumbai. “We looked for her at all the religious spots, destitute homes, hospitals and railway stations in Mumbai but could not find her anywhere,” Sadhwani says.
Wandering is very common for persons with dementia. This news article shares several real-life stories of wandering and also other care stories and some expert interviews on dementia, awareness, support, and other aspects. Read the article at: Care to remember: The challenges of caregiving for Alzheimer’s patients Opens in new window. A quote:
Sometime in 2005 – nobody’s sure when – Savitri Joglekar strolled out of her home in Ratnagiri. She was found 10 years later in an Amritsar ashram, 2,000 km away from her village.
Sampath Kumar, a 93-year-old resident of Besant Nagar, Chennai, is an ex-serviceman with dementia and a hearing impairment. He went missing while out on a morning walk, and in what his family describes as providential given his state, he was reunited with his family because of the kind and timely action of a scrap merchant who found him unconscious. Read the story here: Missing 93-year-old found 20km from home Opens in new window.An excerpt:
“I realised that he had probably collapsed due to weakness. His clothes were soiled,” he said. “I called some friends and we cleaned him up and changed his clothes. We knew he was hungry so we bought him idlis. I decided to take him to hospital and then inform police.”
A father goes missing. The family’s description of their search and eventually finding him after some days.
When Paramananda Ponnaiyan’s father,ex-navy officer Ponnaiyan, went missing, the family put in a very intense effort to locate him, pulling in all the resources and contacts they had. They finally found him after three very tense days; he had apparently traveled 35 Km on his own. Paramananda describes this experience in detail in his blog, which has been reproduced by Citizen Matters, Bangalore; check this link: Finding my lost father in Bengaluru Opens in new window. An excerpt:
Any homeless person on the pavements, I learnt, was picked up by the police and handed over to some NGO organisation. For healthy homeless people it is usually the Beggars Colony, and for mentally challenged destitutes it is RVM foundation hospital on Bannerghatta Road. We also found that the places where homeless people can sleep without getting caught by the police are only BDA complexes, railway stations and bus stands.
Divya Sreedharan is a Bangalore-based journalist. Her father, who lives with her mother, has dementia. Divya has shared her personal experiences related with dementia and wandering in her articles, and is deeply concerned about this problem. In an article in 2011 in The Hindu (Lost and found in 17 hours Opens in new window), she describes one such episode in detail. An excerpt:
On the train, my nearly 70-year-old mother tried to calm my father but, eventually, she dozed off. When she awoke, he wasn’t there. A co-passenger had seen my father at 3.30 a.m. standing by one of the compartment doors holding a suitcase. When the train reached Kozhikode at 7.00 a.m., my mother went to the Railway Police Force (RPF). They advised her to wait for a day; then file a First Information Report (FIR).
In a more recent article in April 2014(Missing in mind (and body) Opens in new window), she again talks of her personal experience and also discusses the wandering problem, use of bracelets in India, and such topics. A quote:
“If a dementia patient wearing the bracelet goes missing, ultimately, a stranger has to stop, check the bracelet and then inform us or his/her family. Else the bracelets are of no use,” a source at NCAA tells me.
A heart-warming incident where a wandering person was restored to his family safely because of alert persons.
In November 2013, residents of an apartment complex in Bangalore realized that the elderly person who seemed to think he was a resident in their complex was having problems remembering his identity and personal details, and were able to calm him and help him and return him to his family. Alertness of the cops also helped. Read the story here: Apartment residents help unite dementia patient with family Opens in new window. An excerpt:
Fortunately, Mrinmoy Lahari, president of the apartment owners’ welfare association, was sitting nearby and noticed Iyer.
Lahari, 74, said, “He looked confused and did not know whom to meet. I realised he was having problems in remembering his identity details. We guided him to our library, offered him water and fruits, and consoled him.”
In this article, a daughter-in-law describes how her father-in-law wandered in spite of all arrangements they had made, and how he was found in a slum five days later, dead of hunger, thirst, and dehydration. Read the article here: Daddy could have lived, if only Opens in new window. An excerpt:
As Daddy wandered around trying to find his way back home, no one noticed this old man walking all alone. In this city of busy 17 million people, no one had time to read the confusion on his face. No one realised that when he was staring at them, he was actually trying to prod his forgetful mind to remember if he knew this person. He did not ask for food – so no one offered him any. He did not fit the popular image of a destitute – so no good Samaritan tried to help him. He was just a harmless old man…
When a younger person gets dementia, there are many specail challenges faced by the person as well as the family. The person is still in a very active phase of life, still earning or handling major responsibilities, the savings are low, the children young. Support is even lower for young onset cases, as most support is designed for older persons.
In this section:
- Four caregiver narratives by spouses of persons with young-onset dementia.
- An early onset patient’s story.
- (Also see the entry for Ekta below, for an extensive blog of a young caregiver for someone with early-onset dementia)
Four caregiver stories from India, all by spouses of the person with young-onset dementia, are available in the Jan-Apr 2017 newsletter of ARDSI, on pages 6 to 9. The newsletter can be viewed/ downloaded from Dementia News – ARDSI Newsletter, January – April 2017 Opens in new window (PDF file, 13MB). These caregiver stories provide a good insight into the challenges faced in care for such persons, such as the problems of understanding and accepting, the challenge of taking on the role of the primary caregiver as well as earning and handling more responsibilities, the impact on children, and so on. In all these cases, the family was able to avail the help of some dementia organization for on-going support or even day care/ full-time care. Many families coping with similar situations do not have such support.
Through personal experience as a care giver, I have doubted myself and my decisions many times. The experience caused me mental and physical stress. Turning to be the sole breadwinner of the family and the primary caregiver was challenging. — From caregiver narrative titled My Life Around Bush – By Anupama Suresh
However, the most important thing that I lost sight of and wish someone alerted me was the support my two young teenagers needed, to cope with their emotions along with myself. I felt they had their own busy life with studies and friends and so their mother’s condition did not affect them as much as it did to me. I was wrong. I was surprised to learn one day when they were invited to join the support group to share their thoughts and they cried, shouted and blamed all for forgetting them. They said, young people like them needed support, if not more support to cope. — From caregiver narrative titled: Beautiful lady Sujata- By Samir Kumar Chatterjee
When he was well, I had never bothered about being practical; banks, finances etc as they were his department. Afterwards, I had to learn it all by myself and now I’m managing. — From caregiver narrative titled: Being an Artist’s Spouse
She was always calm, composed and cooperative and listened to any advice or suggestion. Never ever, she objected to anything vehemently or opposed anything without any solid reason. All this started changing as she grew in years and by the age of 55, she started behaving as never before — From caregiver narrative titled Learn to Accept the Way It Is- By Veteran Wg Cdr DP Sabharwal
Read about an early onset dementia case in this article, Bonds that transcend memories Opens in new window. A quote:
D.P. Sabharwal’s wife falls under the rare “younger person’s case” as she was in her late 50’s when she was diagnosed with the illness. Mr. Sabharwal left his job as a corporate trainer in Chandigarh and moved permanently to Bangalore to take care of his wife.
Read about situations where the caregiver is elderly (in their 70s, 80s, and even 90s) and looking after a spouse with dementia, or, in one case, looking after a child with dementia.
In this section:
- A retired professor’s account of caring for her spouse who has dementia.
- An elderly wife describes her husband’s decline and her care challenges.
- A mother in her nineties looks after her Alzheimer’s daughter.
- An 85-year old writes about his wife’s dementia.
In this first-person article, a retired English professor describes her husband and the impact of dementia in their lives. Fifty years married, she goes down memory line to share their earlier years together and describe the sort of person he was, the setting of the symptoms, the state he is now, and also some care related aspects: Life after oblivion Opens in new window. A quote:
Now, he is much more passive, calmer and thankfully, more cooperative. But he is unable to carry out daily habits like bathing, cleaning oneself, having a shave and so on. A male nurse comes home thrice a week to help, but one has to anticipate basic needs. Though still active at 85, he is increasingly disoriented, unpredictable in his behaviour, and unfortunately, also prone to mindlessly eating anything he sees.
In this first-person article written anonymously, a wife talks about how her husband, once a very active person, began declining because of dementia, and how she tries to take care but how it is not easy. She describes her stress and sense of hopelessness in some detail: Confessions of an anonymous woman: For better, for worse Opens in new window. A quote:
But due to a fall, he was bedridden for two months. And when he abstained from his everyday activities, his condition worsened. It has now been four years and I have been the sole caregiver for my husband. It is not easy — every day, I experience depression, anger and guilt alternately.
Embittered by his pitiable condition, I have lost my religious faith. I have developed ailments and seldom leave the house, and on most days, wonder if I will get to talk about anything other than medicines and poop routine.
Shefali Choudhury is 92 years old. For several years now, she has been the caregiver for her daughter, Dipikia Basu; Dipika is now in the terminal stage of Alzheimer’s and can no longer communicate or interact. In this September 2010 report in The Telegraph, Shefali describes how her daughter, then in her fifties, began showing dementia symptoms and how she has been cared for all these years. Read the report here. Opens in new window
More description of the case can also be read in a December 2009 article here: Experts warn of dementia epidemic. Opens in new window
“I could not accept that Alzheimer’s could happen to my wife a person who was into quizzing, was an avid reader and was full of life,” says 85-year-old brigadier (retired) SP Bhattarcharjya. In this article, this elderly caregiver describes how his wife deteriorated and how difficult it was for him to adjust to this reality. Read: Article by 85-year-old brigadier (retired) SP Bhattarcharjya on the care of his wife Opens in new window.
Support for dementia care at home is very difficult to get. This selection has articles describing situations where such services and facilities are used, and some caregiver accounts about decisions to place a person in a care home.
In this section:
- A daughter’s decision to place her mother in care.
- When a family places someone in a care facility: a first person account.
- Home Care or Institutionalization decisions, and caregiver guilt.
- Care Home decision: A wife describes her decision to place her (early-onset dementia) husband in a care facility..
- Using Attendants: Real-life problems and experiences with getting trained attendants and arranging home care.
- Support Group Meetings: Experience sharing at a support group meeting.
- A Day Care volunteer’s experience: A 16-year-old shares her learning from interactions at a day care in Kolkata.
- Day Care: Improving quality of life even if abilities do not improve.
In this personal essay, Carol D’Souza, a consulting psychologist, recounts her mother’s advancing dementia and how she and her family made peace with the agonizing decision to put her in a care home. She shares her mother’s dementia onset and how it impacted everyone’s life. She talks of how tough the care became, and of her mother’s changed behavior becoming very difficult to handle. Finally, she and her siblings start looking for a dementia care home as the best way for things to improve for her mother as well as for her own family. Read the full essay at: I never wanted my mother to go into a dementia care home Opens in new window. An excerpt about the state after the placement:
It has been a year since we put mom in a Home. She is more peaceful now; has a better relationship with me and trusts me. But her paranoia has to some extent transferred to her current caregivers. It is distressing each time I visit her as she asks to be taken back home. But what she actually means is that she wants her life as it used to be, which unfortunately cannot be so anymore.
Bangalore-based Shamya Dasgupta and his wife worried about his mother, but getting a proper diagnosis took them time. Care at home turned out to be very challenging, too. In this post, he shares his story, describing his mother, her situation, their attempts to support at home, the placement, and how things are now for him and for his mother: Between my mother and herself (archived version) Opens in new window. An excerpt from before the placement:
She had been uprooted from Kolkata to an alien city, without familiar faces. We were out a lot of the time, and my wife (who works mostly from home) found herself too stressed to function. A succession of carers came and went; we couldn’t find one that really cared.
And one excerpt from after the placement…
The important thing is, she is better, and we are better… Occasionally she asks “When will I go back home?”. We ask her if she really wants to go. Won’t she miss Ammu and the handsome young men here. She smiles and asks if we can really afford to keep her there. I think it has been easier for her too.
When we realise that we cannot continue home care for someone we love, we may have to decide to move the patient to institutionalised care, and there is often a lot of guilt involved in this decision. Sometimes, we need to move away for our job or studies. Read a narration where a young man describes the conflicts and anger and guilt as his family members differed over some hard decisions taken for a patient with dementia whom they could no longer handle at home. Read: Home Care or Institutionalization Opens in new window.
Care Home decision: A wife describes her decision to place her (early-onset dementia) husband in a care facility.
This news article is a conference report but it also includes a caregiver story towards the end. Anupama, 54 years old, talks about her 55 year old husband who had started experiencing problems since the age of 44. She shares the impact on the family and how she had to decide to place him in the facility, and the difficulties faced. See: Dementia costs soaring; govt unfazed (Anupama’s story is towards the end of the article) Opens in new window. A quote:
I cannot keep him with me because he turned very violent in September. Before that I used to leave him at a daycare centre. All my earnings have gone into this.
Using Attendants: Real-life problems and experiences with getting trained attendants and arranging home care.
This article describes the care experiences of various caregivers, sharing many of the practical problems and explaining the arrangements the families have made for the care. It explains how, in India, there is barely any support and hardly any trained persons for home-care, making things very difficult for family caregivers. Read the article at: What Caregivers Face While Taking Care of Loved Ones With Alzheimer’s or Dementia Opens in new window. A quote:
Murray went through 60-70 applications before he found the right one, and even then it was a challenge. “In the beginning, attenders would change every few months. Some left on leave and never came back, I had to fire a couple of them after a few weeks and then there were those who couldn’t take it anymore and quit. Most people sent by agencies are thoroughly useless.
Support group meetings offer caregivers an excellent forum to share their experiences and tips. DNA reports one such support group meeting held in Bangalore in July 2010, where caregivers describe the challenging behavior of patients and the social ostracizing the family faces. Volunteers attending these meetings get to understand the situation better and to see how they can help. Read the coverage here. Opens in new window
A Day Care volunteer’s experience: A 16-year-old shares her learning from interactions at a day care in Kolkata.
Minori Parelkar, aged 16, worked as a volunteer in a day care centre of ARDSI Calcutta chapter. She started her work with many assumptions about the problems persons with dementia face, assuming they were like her occasional memory slips. She was also unsure about how she would interact with the persons at the day care. In this personal piece, she shares her experiences and insights gained across her interactions. Minori’s grandfather was also diagnosed with dementia, and she finds connections between what she learns and the changes she sees in her grandfather, and shares how these have impacted her views and interactions. Read the full article: “Remember me?” (PDF file, article on page 8) Opens in new window. A quote:
It was the weekend after my first week there when I started to think about what I had learned from watching the staff and volunteers at the daycare center, and I began to relate that to how I was responding to my grandfather. I realised that it was better to take on the role of whatever he had given me, be it his granddaughter or his accountant, if only to put him at ease.
With this in mind, life suddenly seemed to be traversing a lot more smoothly.
In an extensive article on dementia in India, the Telegraph includes dementia patient experiences. Read of how a patient’s condition may not have improved by attending day care, but his quality of life has. Read the article: With a little help from my friends Opens in new window.
In many families, the children live far away from their parents and are unable to relocate when a parent gets dementia. They try to support from a distance, but face many difficulties and also experience helplessness and guilt. Accounts of such experiences are the main theme in this selection.
In this section:
- Daughter describes her father’s dementia, her mothers caregiving, her attempt to support her mother from a distance, and her guilt.
- Eshwar Sundaresan, writer, talks about his father’s dementia, his mothers’s caregiving, and lessons.
- Caregiving from Another Continent: some caregivers share experiences.
Daughter describes her father’s dementia, her mothers caregiving, her attempt to support her mother from a distance, and her guilt.
Divya is a journalist whose father has dementia. She often writes informative as well as personal articles about dementia. In this article, she combines useful information on dementia, authoritative quotes and excerpts, and personal experiences related to her father’s situation and progress and her mother’s caregiving. She also shares some of her helplessness about the limited ways she can help from a distance. Read the full article: The mind never mattered more Opens in new window. A quote:
That my mother is the primary caregiver is something that causes huge guilt in both my sister and me. For professional and personal reasons, we both live elsewhere. But our mother herself has never complained about her situation. Or complained about us. Which, in a way, makes us feel worse about ourselves.
In another personal story, the same journalist again describes her mother’s coping as a caregiver while the daughter tries to support from a distance. (link: MindSpace: The incredible loneliness – and strength- of being a caregiver Opens in new window. An excerpt:
To be brutally honest, my sister and I don’t really know what it is like to live with my father—what it is to be constantly alert (so he doesn’t slip out the front gate); what it is to hide the food/edible items in the house, especially sweets, (he keeps eating if he finds any); what it feels like to fall sick and not have anyone around to nurse you; what it feels like when your spouse doesn’t care or remember your birthday, your wedding anniversary. Only my mother knows, because she lives with my father.
Eshwar Sundaresan, a Bangalore-based writer, has written a detailed blog entry about his father’s dementia and how it has changed him in some ways and not in others. He was living with his parents, but then his mother decided to move with his father to a place she was more comfrtable with, making Eshwar a remote caregiver. He writes about his mother’s caregiving, and her inspiring strength, and about life-lessons he has learned from his own role in supporting his mother in the caregiving. This introspective piece is available at: They Understand Only Love Opens in new window.
In November 2010, Eshwar’s interview to Dementia Care Notes was published using a pseudonym, “Varun”, to retain his privacy, but he is now willing to acknowledge that he is “Varun”. See it here: His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s . Looking at the two descriptions (the September 2013 blog entry and the November 2010 interview) gives insight into how he integrated his experience in his life-view over time.
In this article, some caregivers living outside India talk of how they are trying to support ageing parents in India using daily phone calls, Skype, and frequent visits. They talk of how they monitor the health of their parents and try to train/ supervise the help using phones and visits. They talk about the guilt they face. Caregiving From Another Continent Opens in new window. A quote:
For a decade, until her mother’s death in January 2012, her habit was to visit India once or twice a year and call each morning before going to work. Gradually, Ms. Dhar became aware her very energetic, very independent mother was developing dementia.
“She would say ‘I’m so lonely. When are you coming to visit?,’ and the guilt would kick in because you know she’s alone and you feel responsible,” said Ms. Dhar, who said she came to dread the morning conversations.
This selection is a cross-section of how dementia presents itself, of various caregiver challenges, and how care affects them. Some single, personal pieces where a caregiver talks of their care journey and its impact; others are interviews of multiple caregivers, sometimes including data on dementia and resources and comments by experts or volunteers.
In this section:
- Nine caregivers talk about their experiences of symptoms, diagnosis, care challenges, and heartbreak.
- Two caregiver stories about caregiver experiences and their search for answers and company.
- Many caregivers share their experiences.
- A granddaughter describes how her 93 year old grandmother is changing with dementia.
- Caregivers talk about the impact of care and bereavement on their career and life
- Prem Panicker’s blog entries on his mother, who had dementia.
- A caregiver shares her experience and says awareness is key to improve things.
- A daughter shares how her father changed with dementia and how the family came to accept the new reality.
- Preparing for Alzheimer’s: a daughter’s lessons from caregiving.
- Poverty, isolation, depression, and dementia: a tragic story of a caregiver daughter and her mother.
Nine caregivers talk about their experiences of symptoms, diagnosis, care challenges, and heartbreak.
Scroll.in has a detailed article where nine caregivers talk about their personal experiences of seeing a loved one decline They talk of the initual symptoms and how the situation worsened, they describe their heartbreak and the practical difficulties faced in getting a diagnosis and providing care. This is an exceptionally detailed and useful article which you can read at: Living with dementia: The searing ache of being a family caregiver in an Indian city Opens in new window. A couple of quotes:
“He’ll sit with the shloka book [during his morning chants] and when you check up on him an hour later, he’d be on the same page or holding the book upside down like a child,” said his daughter-in-law.
To make matters worse, whenever Mahan proposed that his father needed to consult a psychiatrist, it would be met with the standard accusation: “You want to put me away.” When Mahandass was finally brought in for a psychiatric evaluation after much coaxing, he was handed a “clean bill of health” by the examining doctor.
The New Indian Express has published two articles describing real-life caregiver situations including the changed behaviors, the family’s response, and the search for information and solace. The article, A Look into Life of a Dementia Caregiver Opens in new window, describes several incidents to explain how the behavior changed and how caregivers tried to understand, adjust, and care. A quote:
“Most nights, I’d find him sleeping on the floor and he’d refuse to sleep in his bed. I used to feel helpless and lose my temper with him. Later, I realised that wasn’t the solution,” says Raghu.
The other article, Caregivers Find Solace in Virtual World Opens in new window, is about how some caregivers looked for information and company online. A quote:
“I found an international forum dedicated to Dementia and started posting queries on their wall on a regular basis, seeking members’ advice on the ideal diet, care and routine for a patient,” she says.
In this detailed Livemint article, several caregivers share their experiences of challenges and what they did, and experts also give the context of dementia and their suggestions. Read: World Alzheimer’s Day: A caregiver’s struggle Opens in new window. A quote:
“Since short-term memory is affected first, the first person to be wiped from his mind was the most recent one to have entered his life—my daughter and his grandchild,” says Pattabiraman. “As the disease progressed, he couldn’t recall my husband and later, memories of me and my mother were wiped away.”
Watching someone you love deteriorate because of dementia can be emotionally heart-wrenching. Someone who was a constant in the life of the granddaughter is now changing as the entire extended family watches and tries to care. Amma and Alzheimer’s Opens in new window. A quote:
The witty and acerbic Amma who had an opinion on everything from fashion to traditions, politics and politicians, religion and films has gone into a non-communicative state. The only thing that catches her attention are those saas-bahu serials.
This article shares two situations, one of a career woman trying to balance caregiving with her career, and another of a caregiver whose mother has now passed away, but whose caregiving journey caused major family rifts, and how this woman is facing problems coping with her grief, trying to resume an active life, and wondering how to handle the rifts caused in the family during her years of caregiving. (Read the article here: MindSpace: The 24/7 week – Having a career and being a caregiver Opens in new window.An excerpt:
Elder care, like child care, she stresses, comes at the cost of lost opportunities in career advancements, travel, social engagements, alone time, and even relationships with partners. But children grow up; teething troubles are temporary. Illnesses such as kidney disease and complications from old age are not. There are no happy milestones here, she says.
Prem Panicker’s mother had dementia. After her passing, he has made a couple of blog entries where he talks of her and of the passing. See: Prem Panicker’s blog entries on the dementia experience Opens in new window. In these entries, he describes her dementia, how it grew, how the family started finding out what it was, and how such problems had been there with his grandmother and her mother before that, only in those days there was no name for it. He shares incidents of the changes in his mother and trying to come to terms with them. A quote:
One day, I got out of the car and turned and saw mom waiting by the door, a beaming smile on her face. “Did you have a good trip?”, she asked. “Have you eaten anything? You are looking so thin!”
And then she called me by the name of her only brother – the man who had disowned her when she got married against her family’s wishes; the man she had never spoken to for over 50 years; the man who was long dead.
In the March 2014 issue of Alzheimer’s Disease International’s Global Perspective newsletter, a caregiver describes her experiences and suggests that improved awareness would make a lot of difference to the situation. Read the story on page 8 of the issue, PDF file downloadable here (page 8 has the “carer’s story”: Better dementia awareness will make a difference) Opens in new window. An excerpt:
One major problem was that people around us did not understand her situation. They dismissed her diagnosis claiming I was making excuses because “she looks perfectly normal”. They believed her complaints (such as her saying I was starving her) and lectured me about duty and love. If she made mistakes while talking to them, they corrected her or laughed at her or exhorted her to try harder. They kept talking about elder abuse by children, which made her suspicious about me. Once a neighbour egged her to assert herself by going out alone; advice that precipitated a wandering incident.
A daughter shares how her father changed with dementia and how the family came to accept the new reality.
Annie talks about her father Jacob, an engineer, who had been the carer for the family and children for years, but who now needs care because of his dementia. She talks of the changed behavior, and how the family took time to adjust to the role reversal of this new reality. She talks of her emotions while watching her father deteriorate, and how they are managing now. Read the article here: Confronting a devastating disease Opens in new window. An excerpt:
“He would get up in the middle of the night and turn all the lights on, leave taps open or soak all the clothes in water. He would pace around the compound aggressively, chasing imaginary thieves away. He would insist that he has not eaten anything immediately after he had finished lunch. Later on, he would refuse to brush or shave or bath – my dad as I knew him, would never eat food without having had a bath. My mother could not cope nor understand that it was the disease which was changing him. Her coaxing him to do things irritated him so much that twice he struck her down.
Alanna Shaikh, whose father suffered from the disease for a decade, is keenly aware that it can run in the family. So she is doing all she can to prepare herself for the worst. She shares her thoughts in this first person account: Preparing for Alzheimer’s Opens in new window. A quote:
I keep my mind active, too, both in my work (in international development) and in my daily life. I watch what I eat; I take my cardiovascular exercise. But that does not mean I’m safe, because Alzheimer’s, especially the early-onset type that my father had, tends to run in families. And while there are no firm numbers, it is clear that those who have a parent, brother, sister or child with Alzheimer’s are more likely to develop the disease.
So at 38, I am getting ready. Instead of just hoping it won’t happen to me, I am preparing in case I get Alzheimer’s disease.
Poverty, isolation, depression, and dementia: a tragic story of a caregiver daughter and her mother.
In December 2010, Express Buzz published a story describing the state of a daughter looking after her ill mother. The daughter, who had been able to get a college education because her mother had worked as a labourer to earn money, was then unable to take up a job because her mother’s care occupied her all day and night. The mother and daughter lived in a thatched hut, and the only money they got was from persons and organisations that understood their plight. Read the story here: Can society help her? Opens in new window
A follow-up story appeared in February 2011, again in Express Buzz, to provide a tragic update. Read it here: The burdens of care Opens in new window
Personal blogs that span the entire dementia experience, including joys and sorrows, challenges, loss and bereavement
Some bloggers have multiple entries with several personal stories around how dementia affected the person and the family and described their lives with dementia. These include happy and sad monents, accounts of events as they happen, as well as reminiscences, and span the entire span of dementia–undetected initial dementia and early dementia, right up to the dying and death, and even their life after the person with dementia died.
In this section:
- Extensive personal sharing on final stages of dementia: Anis Hoda’s blog.
- Extensive sharing by Ekta, once a teenage caregiver, and now a dementia volunteer.
- Extensive personal blog with 200+ entries spanning the full dementia journey.
This touching and highly personal blog has around 50 entries made by a son, Anis, and his wife, Mariam, describing the last few months of the mother’s life as she deteriorated, and finally passed on. She had vascular dementia. The blog is here: My Mother and I Opens in new window. In his introduction to the blog, Anis says, “My mother had a Phd in Chemistry and was Head of Chemistry Department until she retired about 4 years ago. Now she only draws straight lines when asked to write the alphabets.” Anis and Mariam share small and big incidents related to the mother’s life, things she did, memories, incidents. The entries contain touching details of the decline of the mother’s state and her passing away.
Ekta and her sister were thrust into a care role when they were still students, because their mother had young-onset dementia. Ekta has shared her experiences through various blog entries and interviews, and is now working in the dementia domain to help other families. Her online sharing includes blogs with multiple entries on her experiences, both as a caregiver and daughter, and also as a volunteer. She has also included caregiver stories from friends and relatives. Her blogs are available at (older blog) careforcarers.wordpress.com Opens in new window and (more recent) https://fromoutsidethemall.wordpress.com/ Opens in new window andmedium.com/@iamunity/ Opens in new window.
Some entries from earlier blogging days: A young girl talks to a close relative with early-onset dementia Opens in new window, My Buddy Vana: describing how the stressed, teenaged Ekta was helped by a close friend Opens in new window, and Shraddha: Giving Up Exisiting To Care – a narrative of a very young caregiver dropping out of college to become a caregiver Opens in new window.
Some more recent entries, mainly memories triggered by dates and events, or by some old objects, or due to the dementia volunteer work she does can be seen on Ekta’s more recent blog, for example, under or “memoirs”: Entries tagged with “mother” Opens in new window and Entries tagged with “memoirs” Opens in new window
An interview of Ekta is also available on this website, at A case of early-onset Alzheimer’s Disease..
Swapna Kishore, who was a dementia caregiver for well over a decade, blogged about her mother’s dementia and the care experiences in her personal blog. The entries describe her personal journey as a dementia caregiver for over a decade, and share the various challenges faced in getting a diagnosis, learning caregiving skills, coping with criticism, and making adjustments to handle care for her mother, the dementia patient. She also describes her experiences as a volunteer trying to spread dementia awareness and helping caregivers. The blog has over 200 entries, with menu options and links in the sidebar for ease of access; see it at: swapnawrites.wordpress.com Opens in new window.
Some random quotes:
My mother would keep wanting to see her bank passbooks. She could no longer understand the magnitude of numbers and sometimes fumbled over simple arithmetic, which made it even more difficult for her to get the security of being well-provided for.
Around two-and-a-half years ago, I was close to caregiver burnout, unable to handle my mother’s deterioration and frustration and the never-endedness of it all. More out of desperation than anything, I decided to start including “fun” into the activity list of the day. It seemed quite counter-intuitive a measure because in those days, all the hours were a struggle trying to help her do things she either could not do or did not see why she should do (like change clothes after soiling them). It was so joyless a life, so full of chores that the days seemed to stretch with frown-inducing work. To that mix, I added a wooden jigsaw, a toy of stacked rings, a couple of Panchatantra books, and a few other such foolish-looking nothing activities.
A few years ago, I had assumed that any bed-ridden person would feel helpless and miserable all the time. That is not true for her. She seems happier now than I have seen her before (even when she was young). Especially after all the frustration and agitation she showed because of the inabilities caused by dementia, this is so much pleasanter to see.
Page/ post last updated on: February 14, 2019