Tag Archives: caregiver stress

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

She was only pretending to forget: A family in denial even after the patient’s death

Rukmini (name changed) is the granddaughter of a dementia patient who passed away in an old-age home a few years ago. Rukmini’s mother and aunt, caregivers of the patient, never acknowledged the diagnosis of dementia, and did not take it into account while caregiving. Even now, years after the patient’s death, Rukmini’s mother does not understand that the patient’s strange behavior was caused by confusion and frustration; she is convinced that the patient was being uncooperative and inconsiderate.

Over to Rukmini:

…my mother and aunt are in denial about dementia and related caregiving even years after my grandmother’s death.

I have read “Caregiver Voices” on this website and also seen stories on other websites. Many stories describe how family members changed their lifestyle, left jobs, and moved from one city to another to look after a loved one. Their main concern seemed to be caring for the patient and they tried their best to make the patient’s life comfortable while also balancing their own lives. My own story is very different, because my mother and aunt are in denial about dementia and related caregiving even years after my grandmother’s death.

Background:

Mom and Auntie (Mom’s sister) live in a small town and Nanima (Mom’s mother) used to alternate between Mom and Auntie. When Nanima was in her seventies, she suffered a series of strokes, and began behaving in a very odd way after that. The doctor told Mom and Auntie that Nanima had developed dementia and would get worse over the years.

Mom did not share the diagnosis with my sister or with me.

Read the full post here : She was only pretending to forget: A family in denial even after the patient’s death

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

Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared

Rajesh is a management consultant living in Bangalore. His wife’s mother started showing dementia symptoms around 13 years ago and was diagnosed 10 years ago. Rajesh’s wife, the primary caregiver, got increasingly pulled into the care work. In this candid write-up, Rajesh shares how he failed to support his wife in the beginning. Based on his experience, he shares tips on how close family members can support primary caregivers.

Rajesh writes:

This note is intended for family members close to the main caregiver, such as the caregiver’s spouse, siblings, and children.

My mother-in-law suffers from dementia, and my wife is the primary caregiver. Nowadays, I introduce myself as a secondary caregiver, but I did not always see myself in this role. After my mother-in-law was diagnosed, and my wife took over the role of the primary caregiver, I failed to support her for many years because of ignorance and some incorrect attitudes.

Briefly,

  • I did not try to learn about dementia or its caregiving after the diagnosis. I had no idea of what to expect. I think I expected no impact.
  • I underestimated the amount of work my wife was doing. I did not appreciate that she was getting physically and emotionally overwhelmed. I thought she was “negative” when she looked worried. I also thought she was overreacting when she asked me to reduce travel overseas because she would not be able to handle emergencies.

Read the full post here : Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared

Voices: Caregiving in the news

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

Caregiver emotions and stress

Dementia caregiving is emotionally and physically stressful.

What caregivers can do:  Understand that most caregivers are stressed by this work. Get tips on how to take care of yourself. Use support groups to share stories and tips. Learn how to relax and take some time for yourself. Look for help before getting too overwhelmed.

Stressed and tired caregivers often neglect their own health and well-being. They may not even consult doctors for their own illnesses. They feel cut off from friends and relatives, and do not know how to ask for help.

  • Dementia care causes stress.
  • Some ways to reduce stress.
  • Tips on seeking help.
  • The importance of support groups and forums.
  • If you are feeling really anxious, sad, or depressed.
  • See also….

Read the full post here : Caregiver emotions and stress

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