Tag Archives: financial problems

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

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