Category Archives: Interviews with Dementia Caregivers, Volunteers, and Experts

When you are in the rut of things you can’t think: a doctor-caregiver shares

Vidya (name changed) is a doctor whose grandmother (mother’s mother) suffered from dementia. Vidya’s mother and aunts took care of the grandmother, with some support from Vidya. The family finally reached a point when they could no longer handle the caregiving and had to move the patient to a long-term stay facility.

Could you give us background information about the case and the sequence of events?

Granny lived in my city for many years, staying with either my mother, or my aunt (my mother’s sister). The two houses were close by, and Granny would move from one house to the other whenever she felt like.

Granny suffered from a condition called Transient Ischaemic Attacks or TIAs. The first episode occurred when I was in medical school and I remember she was hospitalised. She recovered quickly and was back to normal. This was followed by one or two smaller episodes of shorter duration, during which she inadvertently passed water where she was sitting/lying. Apparently she seemed okay so it was not taken seriously.

Some time later, Granny took ill and started behaving bizarrely. For example, she once smeared her poo over the bed and the walls of the bedroom. We then called a psychiatrist friend who, after evaluating the patient, suggested that it could be a case of dementia.

As her other parameters were alright, we didn’t think it was necessary to take her to a hospital to assess her physical status and do investigations. Of course I did speak to a senior doctor at the time, who said that anyways nothing much can be done for such a patient.

But as time passed, the bizarre behavior worsened. At that time, Granny was living with my aunt, who was in her late sixties. My aunt found it very difficult to manage to take care of Granny on her own

Read the full post here : When you are in the rut of things you can’t think: a doctor-caregiver shares

My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband

Saraswathi Subramoney, 78 years old, is the caregiver for her 86-year-old husband who suffers from Parkinsonian dementia. The couple lives in central Bangalore in a well-appointed apartment full of curios gathered over the decades. Their children (they live in other cities) visit often to help and comfort, but Saraswathi is primarily responsible for her husband’s care and has to cope with it alone most of the time. In this interview, she shares the progression of her husband’s condition, her ways of handling care, and her feeling of exhaustion and overwhelm.

Can you describe the events that led to your husband’s diagnosis?

The first indication that something was wrong with my husband came around 3.5 years ago, when he fell down a couple of times. We visited Mumbai soon after, and consulted a senior doctor in a leading hospital there. The doctor assessed my husband, conducted various tests and scans, and finally declared that what happened to my husband was only “old age” (my husband was 83 years old). The doctor showed us the brain scans, pointed out some areas, and said the gaps were caused by “ageing”.

We returned to Bangalore. Over the next few months, my husband’s condition worsened to a point I found very difficult to handle. Examples of the behavior he showed were:

  • Losing balance while walking or climbing stairs
  • Fits of anger and shouting
  • Insisting on going for “work” (though he had retired long ago)
  • Insisting on going out for errands that were not needed (such as booking tickets at the railway station)

Read the full post here : My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband

His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s

Varun (name changed) is a writer whose father has dementia (Alzheimer’s). For a few years, Varun helped his mother care for his father, but later, his mother decided to move with the father to their hometown because she felt he would be more comfortable there, and care would be simpler with relatives and friends around them. Below, Varun shares his experiences and thoughts about caregiving.

“Varun”, who gave this interview anonymously in November 2010, continued to ponder and process his caregiver experiences and, increasingly began sharing them with friends and caregivers. He is now open about this aspect of his life, and wishes to give his real name: “Varun” is “Eshwar Sundaresan.” We have retained the interview below as originally published, and have also added, at the bottom of this interview, the link to a blog post he made in September 2013, where he shares his personal growth derived from his experiences with his father’s dementia.

For the period your father was living with you, how did his condition affect your work, leisure, and social life? What sort of adjustments did you need to make to balance your other roles/ aspirations with this responsibility?

His condition affected every sphere of my life.

My leisure time and social life dipped to zero.

I don many roles in my professional life – writer, journalist, consultant, and others– and I began staying at home more than usual so that I could handle any emergency that presented itself. I inevitably lost some revenue, but I felt that my mother needed my presence in those first three years. On two occasions, I went overseas on important assignments and I was forever anxious about the home front. My mother handled him extremely well in my absence. During these overseas stints, I also had the guilty realisation that I was enjoying my father’s absence. By not seeing him and my mother suffer on a daily basis, I felt… liberated. I admonished myself for being a bad son, but I couldn’t ignore this overwhelming sense of relief flooding through me.

Read the full post here : His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s

Care in a dementia day care centre: a social worker explains

Jincy Shiju is a social worker at Dementia Day Care Centre, Bangalore (a service run by Nightingales Medical Trust). Currently, the centre services six dementia patients for day-time care on weekdays. The activities of ARDSI Bangalore Chapter are also carried out through the Centre.

What steps do you follow to admit a patient for the day care facility?

When a client’s relatives approach us for day care facilities, we first ask them to get the client be assessed by our doctor. During this assessment, our doctor checks the client’s current status and identifies which areas to focus on during rehabilitation and care. We next gather information about the client from the client’s family, using our “client social profile” format, and we sit with the family to get clarifications and additional data about the client.

At the end of this information-gathering, and before we take in the client for actual care, we are therefore well informed about the client’s personal and social history. For example, we know:

  • Client’s personal history, such as preferred name, school/ education, occupation, cities lived in, languages known, family details (such as spouse, children, grandchildren and others), friends/ neighbours, pets
  • Special memories and anecdotes
  • Social involvement, such as whether the client likes to socialize, social activities enjoyed, etc.
  • Emotional habits, such as how the client expresses emotions such as joy, sorrow, does the client like to be touched/ hugged, how the client expresses frustration
  • Religious beliefs and habits
  • Behavior challenges
  • Routine the client is used to

Read the full post here : Care in a dementia day care centre: a social worker explains

Conflicts in the family over dementia care

Sarla (name changed) lives in the USA with her husband. Her mother-in-law, who lived in India, passed away after suffering from Alzheimer’s for some years. In the detailed account below, Sarla describes the progression of the disease and the care, and how the family’s lack of communication, resentments, and conflicts came to play in the situation. We see the whole gamut of the experience–the initial denial, the spouse hiding the loved one’s problems because he wanted to remain independent and not bother his children, the problems of caring from overseas, the lack of coordination and trust, the clashes and criticisms because of differing perspectives over what care constituted, and what the end-of-life decisions should be.

Sarla gives her conclusions at the end. We, as readers, may draw our own lessons on what we can do in similar setup to avoid the problems faced by Sarla’s family while caring for the ailing mother-in-law.

Coping with Alzheimer’s from 10000 miles away

By Sarla (name changed)

You want to get on a plane and be there but also know it is not feasible every time. You live here and they live there and that is the reality today.

What is it like to monitor a serious sickness of a loved one from 10000 miles away? You get a call early morning telling you of a problem. You stay awake all night (being 12.5 hrs behind) waiting for updates. You try to hide the panic you feel (everything seems so much more scary because you are not physically there) and stay calm for the parent who is handling the crisis. You want to get on a plane and be there but also know it is not feasible every time. You live here and they live there and that is the reality today.

This story is about my mother-in-law and her Alzheimer’s Disease, about her care, and how our family of three siblings, two overseas and one in India, was unable to coordinate her care cordially for her sake. …

Read the full post here : Conflicts in the family over dementia care

Taking dementia patients for outings: a volunteer shares his experience

Satish Srinivasan volunteers two days a week at a dementia day care centre in Bangalore. As part of this, he coordinates activities for the patients and also takes them for outings.

Could you give us an idea of the locations you have visited along with the patient, and how the patients responded?

We have been to 13 places so far. Aquarium, Science Museum, Planetarium, Elders Enrichment Centre Malleswaram, Bimba Art Hut, Lal Bagh Flower Show, Ramakrishna Ashram, HAL Aerospace Museum, Bangalore Dairy, Lal Bagh, NCAA, Ragi Gudda Anjaneyana Temple, Durga Puja Pandal

In all cases, patients responded well and were enthusiastic. Some examples of their responses:

  • When we went to the aquarium, one patient,who was normally not communicative, said she had an aquarium at home with similar fish!!
  • There was a particular patient who used to ask me every time I came in as to where we were going today!!
  • One client thanked me profusely after each visit
  • One client wanted his picture (hard copy) which I gave him. Next time he gave me a 50 rupee note and said thanks (I had to politely return it to him)
  • They loved the Lal Bagh flower show.
  • They liked playing badminton and cricket and knew the basics.

What is the state of dementia of the patients you take for the outings? Are they able to walk without support? Are any of them on wheelchairs?

Read the full post here : Taking dementia patients for outings: a volunteer shares his experience

Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s

Ekta Hattangady was 15 years old when her mother, then 45, was diagnosed with Alzheimer’s. Over the next 4 years, till her mother passed away, Ekta juggled the role of caregiver and student, facing the unusual situation to the best she could. Now much committed to the cause of supporting caregivers, she shares her experiences and perspective below.

Your mother suffered early-onset dementia. Often, when old people show dementia symptoms, it is attributed to old age. What sort of behaviors did your mother show which led to the family consulting a doctor for a diagnosis?

Among other things, she’d forget her keys, to switch off the geyser, put off the gas, have no recollection of having eaten, lack of inclination towards company, etc….She wouldn’t respond to greetings from colleagues, run out of the classroom wondering where she was, and just not be able to complete her sentences.

Well, the above statement said she was diagnosed at 45, but she was demonstrating “peculiar” symptoms for at least 2-3 years before. When I was 13, I remember she gave me a huge sum of money and asked me to manage the household expenses. In hindsight, this tells me that she was aware of her difficulties. Among other things, she’d forget her keys, to switch off the geyser, put off the gas, have no recollection of having eaten, lack of inclination towards company, etc. The GP said it was probably related to her menopause.

But the symptoms grew worse. She had been teaching at the pre-primary of a popular school and they said that she seemed quite lost. She wouldn’t respond to greetings from colleagues, run out of the classroom wondering where she was, and just not be able to complete her sentences.

Finally, we took her to a psychiatrist, supposedly the head of the Indian Psychiatric Association, and he diagnosed her with Schizophrenia. This is the worst thing that has ever happened to my mom or to me! She had an adverse reaction, became violent and it was impossible to deal with her. I still have a mark just below my shoulder, she had bitten me there.

We finally took her to Dr. Wadia in Mumbai, had an MRI at Leelavati Hospital and he said it was EOAD.

Read the full post here : Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s

Voices: Interviews with dementia caregivers, volunteers, and experts

Every caregiver has a story. Even persons concerned about caregivers have experiences to share. Below, we include links to several interviews of dementia caregivers, volunteers, and experts. These provide multiple points of view and multiple experiences of dementia care. They give a range of observations and tips.

  • Interviews with dementia caregivers:
    • 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.

    And many more…from caregivers and from volunteers/ experts….

    Read the full post here : Voices: Interviews with dementia caregivers, volunteers, and experts