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The website update approach and some significant logs can be seen here: Site update notes.

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Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts

Hyderabad-based Ritika is a 48-year old solo caregiver for her 80-year old father, while her older brother, a prosperous businessman, lives in Jammu with his school-teacher wife. Ritika entered the solo caregiver situation without realizing it, in a series of steps involving her mother’s death, her father selling his Jammu house without anyone’s consent, and his insistence on buying a house in Hyderabad where Ritika’s husband (in the armed forces) was posted.

When Ritika’s husband was transferred out of Hyderabad, Ritika moved her father to Jammu so that he could be looked after y his son, but father could not handle the Jammu winter are returned to Hyderabad. Ritika moved in with him to support him through the winter months. “I knew he was ailing and felt duty-bound to look after him for the four-five winter months,” she says. However, her father did not go to Jammu to his son even after winter, Ritika could not join her husband on his posting, and it has now been three years and she is still in Hyderabad, caregiving for her father alone. Through these last three years, Ritika has faced extreme financial hardship and emotional setbacks.

In this interview Ritika shares the sequence of events, how every relationship has been tested in the last three high-stress years, how she copes, what she thinks of her future and how she manages to carry on in spite of such an extreme caregiving situation.

Please give us an overview of your father’s state and the current care setting.

I do all the caregiving and cleaning etc. I am not comfortable employing a day and night male attendant because my father and I live alone.

My eighty-year old father, once an alcoholic and chewing tobacco addict, is now suffering from hypertension, chronic kidney disease (CKD) and middle to advanced stage fronto-temporal vascular dementia. He can walk a little bit with the walker, but is wheelchaired for hospital visits and can only travel in an ambulance since he is unable to seat himself in a car without trained assistance. He also has a permanent suprapubic catheter [a catheter inserted into the bladder to drain urine directly into a bag]. He has no bowel and bladder control and has to wear diapers at night. He is incapable of changing his diapers and cleaning himself due to severe movement problems. I do all the caregiving and cleaning etc. …

Read the full post here : Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts

Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates

Vijaya is a Mumbai-based qualified accountant, who set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life, and the heart-break and decisions and dilemmas involved. [note]

Please tell us about your father’s medical problems in the last year of his life, and the overall care arrangements you and your sister used to support him.

My father passed away in June 2011 at the age of 80. He had developed dementia caused by Binswanger’s disease and multi infarct (vascular dementias) for over 12 years, and he also suffered from other medical conditions like hypertension, age related arthritic conditions, and later UTI and heart arrhythmia. My mother, and later my sister and I took care of him over the years.

My father was not ‘bedridden’ for most of what turned out to be his last year of life. Had we allowed him to, he would have loved to stay in bed. He was very weak physically but was awake for many hours during the day, and also in the night. Sometimes he would not sleep at all for a couple of days and later compensate by sleeping all the time and then he had to be woken up for bath time, mealtimes, etc. (sometimes he would even fall asleep during his bath 🙂 ).

I had suspended my career and returned to India so that I could stay at home all day. I took care of the housework and the daytime activities of caregiving. Usually my sister would spend time in the evening with him after she returned from work; she would feed him dinner, give him his medicines, and put him to bed.

Usually when he was awake, my sister and I would walk him around the house 2-3 times a day. He used a walker, and we had to physically support and assist him as he walked. During the day, we would seat him near windows. From one window he had a view of a road and from another, he could see a garden. Also, for some hours, especially at mealtimes, we seated him in front of the TV because he usually liked watching cartoons.

Read the full post here : Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates

When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law

Neena (name changed), a chartered accountant who left her professional work to look after her mother-in-law, describes the challenges and heartbreak of home care of a bedridden patient with multiple medical problems. An earlier interview of the care (when the mother-in-law was not bedridden) is available here: Caregiving challenges, trained ayahs, depression: a caregiver’s story.

Please describe the circumstances that led to your mother-in-law becoming bedridden.

Ma is now 86 and suffers from multiple medical conditions, including heart problems, osteoporosis, Parkinson’s Disease, and dementia.

Getting her (Ma) to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times

Over the last few years, she had become increasingly dependent on the hired help for walking, and also grown very scared of falls. When she was taken for walks or to the bathroom, she often got confused about how to lift her legs to walk, and her legs would get sort of locked, and she had to be repeatedly prompted about which leg to lift, about moving the leg forward and so on. When our regular help went on leave and we had a substitute helping Ma, this substitute did not know how to handle Ma at such times, how to coax her to walk and so on, and others had to help. Multiple instructions often confused her even more and she would completely stop movement and her body would become stiff. Getting her to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times and this was a huge task as Ma had become heavier with absolutely minimal exercise!!

Read the full post 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 (name changed) has a mother suffering from Alzheimer’s Disease, something the family found out only after years of watching her slowly-increasing forgetfulness. Care is being given by Mala’s father, who refuses help. In this interview, Mala goes down memory lane to describe the early symptoms, the diagnosis and treatment, the family’s coordination for the care, and Mala’s own hope and guilt.

Please share something about your family.

Daddy (now almost 80 years old) is my mother’s caregiver, and while we all try to support him in various ways, he insists he does not need more help right now, and will ask for help if he needs it.

We are three siblings; I have two elder brothers and I am the youngest. Our family is an upper middle class family, and we are all educated and pursuing good careers. Daddy retired over a decade ago, and Mummy was a home maker. All of us currently live in the same city; my eldest brother and his family lives at some distance, my other brother and his family live next door to my parents, and I live with my in-laws just a few minutes of walking distance.

Daddy (now almost 80 years old) is my mother’s caregiver, and while we all try to support him in various ways, he insists he does not need more help right now, and will ask for help if he needs it.

Tell us about your mother before the symptoms started.

Mummy was what we would probably call an ideal homemaker. Though a graduate who had worked for some years, she was happy to leave her job and switch to full-time home making. My father, a quiet man, worked at his job, earning money. Mummy was the one who was always there for us, her children, when we were younger. She loved to cook for us. She was very social, and was prominent within our community for her participation in various group activities. …

Read the full post here : Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia

My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Nadira (name changed) is a highly-reputed consultant who has executed sensitive and critical assignments with several well-known multi-national companies. She is now taking a break from professional work and residing in India, caring for her 80+ mother who suffers from Alzheimer’s. In the interview below, Nadira shares how the progression of her mother’s illness reflected in behavior changes, how the family took time registering that these changes were different compared to earlier, more regular difficult behavior displayed by her mother, and how she has now educated herself on the condition and developed the patience, love, and empathy required to care for her mother.

Please share some background information related to your family and situation.

I was the first person in my extended family to leave home at 17 years of age – to study abroad and shape my future. I am the youngest of three children; my sister and brother are much older than me. It always seemed to me like there was a whole generation missing between my parents and I. Because of this, my relationship with them was always fraught with confrontations and rows, especially in my late teens and early twenties.

The relationship with my mother in particular was pretty fractious, probably because we both have very similar personalities; we are both headstrong individuals with quick tempers. Our blow-ups were frequent, harsh and at times even violent, because she seemed to be possessive and always wanted to have her own way.

Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s. Without any knowledge of what he was dealing with, my father took care of my mother until 2001, at which stage my parents moved in with my older sister.

After I left home for studies, contact with my parents was restricted to short annual visits. My contact with my siblings who were married and lived different parts of the world, was even less. My parents lived in India by themselves because my siblings and I were settled abroad. Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s

Read the full post here : My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to share tips that can be used by family caregivers looking after persons with dementia in a home setting.

As someone who has been working with patients with dementia, you must have often encountered upset and agitated patients. Can you describe a couple of such experiences and how you and your colleagues resolved them?

In my experience, when persons with dementia are admitted to a hospital for an acute medical condition, it is not uncommon for them to occasionally become agitated. This also happens in “aged care” facilities, where patients have moved in for long-term assisted living care. Sometimes this agitation is related to simple things like the patient not being able to find the toilet. Sometimes they know that they are not at their usual place, and hence have a desire to leave.

..a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost

Also, such agitation can happen even to patients living at home, and such a desire to “go home” (even though they are already at home) may be related to their mind being in a different chronological time in their history. For example, a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. …

Read the full post here : Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

She would simply hold on to me for support: a husband cares for a wife with dementia

Introduction: Ramana Rajgopaul, a successful professional manager, gave up his lucrative career to become the caregiver for his wife after multiple cerebral and cardiac infarcts. His wife has since passed away. In this interview, he describes his experiences and emotions as his wife’s caregiver.

Could you describe the symptoms and state of your wife, which led you to give up your career?

ramana rajgopaul and family
(from left) Ramana’s father, Ramana’s wife, Ramana

My wife’s short term and long term memories were shot to pieces. Both would work some times, but most times, they would not. She could not recollect names, places or events and if some one explained, she would pretend to understand, but it was just that, a pretense. The only two people she recognized and was comfortable with were our son and me and here too, the past had no meaning or resonance for her. Simple things like taking medicines and prescribed food were a problem because she would not remember if she had taken or not. Anything or place out of the familiar would result in panic attacks for her and if either my son or I was not around, she would simply go into a shell and it would take hours to come out of that shell.

On a few occasions, she went out to walk on her own, when I was not around, and even within our own locality, she got lost. Luckily on all occasions, people who recognized her brought her safely home.

Read the full post 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

Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver.

Please describe the patient’s state, how long you have been caregiving, and what your current caregiving involves. Tell us who else are involved in the care, and how the work is distributed.

My mother was officially diagnosed with dementia in May 2009 at age 78, though the symptoms were there at least two years before that. She is currently in the middle stage of dementia – she cannot read or write, does not recognise us, cannot bathe herself without guidance, has to be helped to eat, for example, she has to be shown how to handle the spoon. Mum gets delusional in the evenings, and begins talking to the fan or the cupboard, and says she wants to go home.

Mum gets delusional in the evenings, and begins talking to the fan or the cupboard, and says she wants to go home.

Mum’s dementia onset probably occurred after my father passed away in 2004. I have been looking after her for about 2 years now.

There have been two major setbacks in these two years.

  1. She developed malaria and fell down in the toilet in August 2010. She grew more disoriented after that, and the malaria medicines and accompanying nausea were very difficult to handle.
  2. Read the full post here : A dementia caregiver shares her story and her caregiver wishlist

Long distance caregiving: a caregiver describes the challenges and her approach

Sudha (name changed) has a father with dementia. Though Sudha has settled in the USA with her husband, she spends several months a year living in Noida to help her mother care for her father. In this interview, Sudha describes how she and her siblings coordinate long-distance care using frequent phone calls and visits, and also using technology to streamline the care. She describes the differing approaches of her and her siblings, and shares her thoughts on sibling mismatches.

Please describe the patient’s state and the location and role of various family members involved in the caregiving.

My father is in his eighties, and has mild to moderate dementia. Some years ago he was treated for a mild ischemic stroke and mostly recovered. Last year he was treated for sodium deficiency and a very bad urinary infection.

My parents live in Noida, near Delhi. My older sister lives in a flat across from them. I live in Portland in the USA along with my husband. My younger sister, who is single, lives in Seattle. Between us all, we have learnt to manage my father’s conditions, and his sodium level and urine are monitored regularly.

How is the caregiving coordinated between you siblings? How is the schedule decided, and how often and how are status updates exchanged?

My older sibling, who lives near my parents, checks on my parents once or twice a day for about 15 minutes. I and my younger sibling live in the USA and both she and I call my parents morning and evening at different times. …

Read the full post here : Long distance caregiving: a caregiver describes the challenges and her approach