Voices of dementia caregivers are subdued in India, because dementia is often confused with old age, and the caregiving challenges and heartaches are not acknowledged or appreciated socially. We caregivers therefore, are unable to pool our experiences and get a sense of community support.
Here are some dementia caregiving experiences shared online by some Indians.
- Four caregiver narratives by spouses of persons with young-onset dementia.
- A daughter’s decision to place her mother in care.
- When a family places someone in a care facility: a first person account.
- Two caregiver stories shared on patientsengage.com, a patient/caregiver focused healthcare platform.
- Eshwar Sundaresan, writer, talks about his father’s dementia, his mothers’s caregiving, and lessons.
- Prem Panicker’s blog entries on his mother, who had dementia.
- Anis Hoda’s blog: My Mother and I.
- Santish Ojha’s blog: Happy Mother’s Day.
- Living with Appa.
- Progressive Supranuclear Palsy, a rare cause of dementia: a daughter explains.
- Blog for caregivers by an ex-caregiver, Vijaya.
- A carer’s story: My mother my child.
- Visiting a dementia patient.
- Home Care or Institutionalization decisions, and caregiver guilt.
- Supporting a caregiver: My buddy Vana.
- Shraddha: Giving Up Exisiting To Care.
- Extensive blog sharing personal dementia caregiving experiences.
Of special note here is the extensive blog of dementia caregiver, Swapna Kishore (the person behind Dementia Care Notes). This blog has over 200 entries and shares several personal experiences of caregiving across the entire dementia journey of Swapna’s mother. More about the blog here.
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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 (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
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 . 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. . 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.
It is rare to find personal stories of people who share the events that led to placement in a care centre, and what happened after that. Read the full article here: Between my mother and herself.
PatientsEngage, a social enterprise, is a patient/caregiver focused healthcare platform for supporting the management of chronic diseases. It also includes caregiver stories. Below, information on two caregiver articles they published:
Paro, carer for her 86-year-old mother who has dementia, tells us what she has learned from the experience. Link: Mothering your mother . An excerpt:
Watching TV or listening to music is good, but I have to be careful about the music I play as some of it makes her cry (perhaps triggering a memory).
Chennai-based Gowri shares her experience as a caregiver of her mother with dementia. Link: I paint to my heart’s content and refresh my mind to start each challenging day anew . An excerpt:
Initially, it was a tough haul for me as caregiver. I constantly had to, and still have to, remind myself that a person suffering from dementia can’t help certain behaviour. It really needs time, effort, and patience to come to terms with that. There were moments when I was mad at her.
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 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 .
Three years ago, Eshwar had spoken about his situation in an interview to Dementia Care Notes, published using a pseudonym, “Varun”, to retain his privacy, but he is now willing to acknowledge that he is “Varun”. That interview, published in November 2010, can be seen 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 some insight about how caregivers may integrate their experience in their life-view over time.
Prem Panicker’s mother had dementia. He talks about it in a very poignant blog entry he made when she died, describing 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 many incidents of the family experiencing the changes 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 this touching and highly personal blog, My Mother and I , Anis Hoda has shared some of his experiences with his mother, who had vascular dementia . 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.” The blog also has entries by Anis’s wife, Mariam. Both Anis and Mariam share details of small and big incidents related to the mother’s life, things she did, memories, incidents. The last several entries contain some very touching details of the decline of the mother’s state and her passing away.
Santosh Ojha, a blogger, includes some entries on his blog on his mother, a dementia patient. For example, this entry: Happy Mother’s Day
Uma Iyer is a freelance consultant with IBNLive. Her father-in-law suffers from Alzheimer’s. In this post at IBN Live, Uma describes how she and her family have tried to understand the diagnosis and come to terms with it. In this post, she describes the problems they face and the challenges of difficult dementia behavior, and the need for caregivers to reinvent themselves ever so often. She talks of the help she received from a member of the Alzheimer’s Society of India, Delhi Chapter, who spoke from his heart and shared his experiences. An archived version is available here: World Alzheimer’s Day story: Living with Appa (Uma Iyer) .
(This link may have stopped working because the hozzit site is down) Progressive Supranuclear Palsy or PSP, is a neurodegenerative brain disease that has no known cause, treatment or cure. When her father got PSP, the doctors were unable to diagnose it, and as a result the family did not understand why their loved one was changing so much, and did not know how much he must have been suffering. Read an archival copy of this sensitive portrayal by the daughter here: World Rare Disease Day and My Lessons From it All .
Vijaya, an ex-caregiver, has a blog for AD caregivers where she has shared some tips for caregivers. She has also created a page with tips. While most of the blog entries and these pages with tips are not directly on personal caregiving experience, Vijaya writes from the perspective of an Indian caregiver. The blog is sporadically updated. Check these out here: Alzheimer’s Info blog for Caregivers and Tips for You .
In a touching, poetic essay, a carer shares the joys and sorrows of caregiving a mother who progresses through the various stages of dementia till she finally passed away. The carer says:
She was my third child, seventy -two years old, silver topped and almost wrinkle free. She was also my MOTHER.
The carer takes us through the journey of ten years as the mother deteriorates to a point when this elderly lady wanders because she wants to be taken home to mummy, and then finally slips into a peaceful state and gives up her desire to live. Read this touching essay at a site archive here.
A young girl describes her conversation with a patient of early-onset dementia, where the patient, living in a strange world that mixes facts and fiction and is placed in the past, talks to her affectionately about poetry as the visitor listens and validates his feelings. For those of us who wonder how we can ever spend time with someone who doesn’t remember, this is a gentle reminder that one can listen with one’s heart, and that there are truths other than historical facts. Read the story here .
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 .
A caregiver, thrust into caregiving when still a student, describes how she was devastated by her mother’s early-onset Alzheimer’s, and the stress and isolation she felt. She describes how some select, close friends and their mothers helped her and supported her through those tough times. Read this to understand how difficult it is for caregivers to cope with the situation, and how others around them can help. Read the personal account: My Buddy Vana .
This moving narration describes how a young girl, a student, decides to give up her studies to take care of her mother, an early-onset Alzheimer’s patient. Shraddha was in her final year at college, just a few months away from her examinations and degree, when her mother’s wandering becomes alarming and the family has no way of handling it except wanting Shraddha to be available for care all the time. Shraddha talks of her decision to give up her studies, and the way the family receives it. Read the story here .
Swapna Kishore, who has been a dementia caregiver for well over a decade, is a regular blogger and her blog has over 200 entries, most of them on dementia/ caregiving. The blog has menu options and links in the sidebar for ease of access. Check out the blog: http://swapnawrites.wordpress.com. You can also follow the blog using email subscription.
Swapna’s 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 through training and through her website (this website). Broad categories covered in the personal caregiver entries are:
- Incidents related to my mother’s diagnosis
- Living with dementia
- Challenging Behavior
- People around us and their reactions
- Adapting home and life to support my mother
- Late stage care
- On my caregiver role
- Caregiver isolation, loneliness
- Fulfilment in caregiving
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. That her pension was more than adequate was a concept she could not register. That I would support her if need be was something she did not believe. That her apartment could obviously not be sold without her consent was again something she did not understand; perhaps it was those TV serials again. (From Beginning to understand the reality of “memory loss”)
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. (from Enjoying fun time with my mother
A few years ago, I had assumed that anyone who was bed-ridden would feel helpless and miserable all the time. That is not true for her. She seems happier now than I have ever 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. (from One year of care for a bedridden mother with dementia)
Page/ post last updated on: May 5, 2017