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
Sometimes, caregivers have to coordinate care for a person with dementia who is living in another city or country.
What caregivers can do: Understand the current state of the person. Understand the available support systems. Coordinate with locally residing relatives and available services to manage safe care from a distance. Check the status regularly. Keep adjusting the arrangement. Be ready for emergencies.
Children and other close relatives of persons with dementia may be in another city or country. They cannot move back to live with the person because of things like their job or the education of their children. And they may not be able to get the person to move in with them. So they have to understand the situation, take decisions and provide help from a distance. Terms used to describe this are: long-distance caregiving, remote caregiving, and overseas caregiving. This page discusses various aspects of such care.
- A general understanding of remote care aspects.
- Possible scenarios of long-distance care.
- Understanding the dementia care realities of India.
- Locating relevant resources in India.
- Getting information required for care from a distance.
- Living arrangements if the person with dementia is not staying with family members in India.
- Decision making related to care options, moving closer or calling parents over.
- See also….
Read the full post here : Long-Distance Dementia Caregiving for Persons living in India
David D’Souza lives in Bangalore. His mother suffered from Alzheimer’s Disease. Off and on for ten years, till she passed away, David and his siblings coordinated to provide care for his mother, who lived in a different city (where none of the siblings lived). Below, he shares the arrangement they used for taking care of his mother, and the problems faced.
Please describe the arrangement for your mother’s caregiving.
There were two women hired to attend to my mother round the clock: Cooking, washing, bathing, washing clothes, cutting hair, cutting nails, dressing, accompanying her to Church during the first 5 of 10 years. Later my mother could not walk to Church so the attendants would walk with her in the compound of the house daily for about an hour.
When my mother became bed-ridden they continued the above and now added physiotherapy sessions every evening!
Read the full post here : Remote caregiving: an arrangement, and issues faced
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. >
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
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
This page provides links to some online news reports, articles, and personal essays 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. Articles have been selected to provide a cross-section of recent caregiver experiences and are arranged by their main theme for the convenience of the reader. Themes include: Wandering, Early onset dementia, Elderly caregivers, Decisions and experiences around using care homes, day cares, and attendants, “Remote” caregivers, arrangements, and guilt, Diverse care situations, symptoms, challenges, introspection, comments, and Personal blogs that span the entire dementia experience.
Read the full post here : Voices: Caregiving in the news
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