Tag Archives: coordinate with family

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

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

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

Caregiving challenges, trained ayahs, depression: a caregiver’s story

Neena (name changed) is a Gurgaon-based chartered accountant with 22 years experience. She has now quit work to manage care for her mother-in-law, who is now dependent for all activities. In the interview below, Neena describes the caregiving situation and its challenges, and how she handles it.

Please give us some background information about the patient.

The patient is my mother-in-law, aged 86 years, a graduate in music from Vishwa Bharati, Shantiniketan. She has 2 sons (aged 57 & 50) daughters-in-law , 4 granddaughters, and a grandson. Her husband passed away in 1993 and she lived independently in Calcutta and Mumbai from 1993 till 2005. She suffered a heart attack in June 2005; she had to undergo angioplasty, had a pacemaker implant in July 2006. Then she suffered vertebral fractures arising from a fall in the bathroom in July 2007, which led her to become bedridden. This led to an acute salt imbalance in her system and she was comatose for about 10 days. She spent the year 2007 mostly in hospitals, and then slowly started recovering.

My mother-in-law remembers old memories like they happened yesterday, but what happened today or yesterday does not have place in her memory.

Memory failures began, and the physician informed us that the symptoms pointed to dementia. They started about a year ago and gradually got worse. My mother-in-law remembers old memories like they happened yesterday, but what happened today or yesterday does not have place in her memory. Earlier a hyperactive lady, she does not wish to live as a dependant. She has simply lost the will to carry on because she has become totally dependent. It is impossible to cross the wall she has put up around her.

All the incidents since 2005 mentioned above occurred during my mother-in-law’s visits to our home, until finally she was so dependent that she could not go back at all. She is still under our care.

Read the full post here : Caregiving challenges, trained ayahs, depression: a caregiver’s story

Invisibility of caregivers leads to their isolation: a development consultant shares her key perceptions

Shikha Aleya is a writer, researcher and development consultant, and is involved in too many projects at any given time, including pet-sitting. Along with friends and colleagues, she is trying to create a community forum called Caregivers Link, to connect caregivers, resource people, and organizations together. As part of her work related to this, she has been collecting data to understand caregiver concerns and perceptions and needs better. >

Based on the data you have gathered so far, can you tell us how the caregiver role is perceived in India?

…informal family caregiving is not seen as a distinct role.

From the responses received and after talking to many caregivers, one key perception that emerges is that informal family caregiving is not seen as a distinct role.

Most caregivers are family members (children, parents, spouse, siblings) of the care receiver, and because they are related, their ‘caregiving’ is commonly perceived to be an extension of their role in these relationships. It is almost like saying, “You don’t need help to be somebody’s wife, mother, father or child, so why do you need help being a caregiver in those relationships?”

Most caregivers appear to agree that providing care is part of the relationship, but the problem is that the support they need to provide care is often missing. Even under normal circumstances (where no care is involved), everyone needs support in these roles. The situation is much more difficult when someone also needs to provide care; such a caregiver needs much more support.

This invisibility of the caregiver leads to caregiver isolation and is one of the areas that Caregivers Link plans to address.

Could you describe the common areas of concern caregivers have?

Top of the list is the need for trained attendants for home care.

Read the full post here : Invisibility of caregivers leads to their isolation: a development consultant shares her key perceptions

Our presence here makes a difference to her: a son talks of supporting his caregiver mother

Ranganath Subramoney is a Dubai-based consultant. His father, now 86 years old, lives in Bangalore and is suffering from Parkinsonian dementia; the caregiving is being primarily handled by Ranganath’s 78 years old mother, but Ranganath is in Bangalore ten days a month to help, besides remaining available over phone. Here Ranganath shares how he and his siblings try to ensure that their father is cared for, and their mother does not get overwhelmed. >

(Read )

Your mother has already described how care is being coordinated currently for your father by using a number of services (attendants for the day and night, and a dementia day care centre).

The arrangement for Ranganath’s father involves using a day attendant for 8am to 6pm, a night attendant from 8pm to 8am (all days), and availing a dementia day care centre’s service for 9:30 am to 4:30 pm, six days a week. Even with this arrangement, Rangathan’s mother has to handle some hours of caregiving alone. Read her interview here.

Yes, my mother has accurately described the modality used for my father’s care. I’d like to add that while the use of attendants for the day and night is good in its form and function, any disruption in the availability of attendants throws my mother into panic.

When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days. The agencies supplying attendants do not seem to have the resource planning required to handle such emergencies.

For example, sometimes the attendant who is supposed to report for work calls up to say that he/ she will be delayed by a few hours, or that he/ she cannot come on that particular day because of some personal reasons. When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days.

Read the full post here : Our presence here makes a difference to her: a son talks of supporting his caregiver mother

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

Coordinate caregiving between family members

Different family members have different ideas about how to take care of the dementia patient.

What caregivers can do: Discuss care openly within the family. Plan together. Keep everyone involved and informed. Build trust. Share the status and problems regularly. Talk openly and honestly. Understand everyone’s views, and discuss the differences.

Care for a dementia patient goes on for many years. Family members try to share the work and costs but don’t always manage to do this well. One family member may end up doing much more work than others. There could be anger and mistrust. Problems usually happen because family members don’t discuss the care and plan together.

  • How families typically share the care work .
  • Typical problems between family members.
  • How to plan the care together.
  • Suggestions for live-in caregivers.
  • Suggestions for distant caregivers.
  • Suggestions to involve the youngsters.
  • See also…<.

Read the full post here : Coordinate caregiving between family members