Home care for late stage dementia, Part 6: Tube feeding and related decisions

Home care for persons in late-stage dementia is very challenging. In a series of interviews, Dr.Soumya Hegde, Bangalore-based Consultant Geriatric Psychiatrist, discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions. Part 6, the concluding part, discusses tube feeding and related decisions and their consequences. …

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Home care for late stage dementia, Part 5: Eating/ swallowing problems

Home care for persons in late-stage dementia is very challenging. In a series of interviews, Dr.Soumya Hegde, Bangalore-based Consultant Geriatric Psychiatrist, discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions. Part 5 discusses a very common area of concern: when someone with dementia starts having eating/ swallowing problems. …

Read the full post here : Home care for late stage dementia, Part 5: Eating/ swallowing problems

Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life

Home care for persons in late-stage dementia is very challenging. In a series of interviews, Dr.Soumya Hegde, Bangalore-based Consultant Geriatric Psychiatrist, discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions. Part 4 discusses some more specific care topics – constipation, use of catheters, dental care, and improving the person’s quality of life. …

Read the full post here : Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life

Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores

Home care for persons in late-stage dementia is very challenging. In a series of interviews, Dr.Soumya Hegde, Bangalore-based Consultant Geriatric Psychiatrist, discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions. Part 3 discusses some specific care topics – bruising, skin care and circulation, exercise, massage, and bedsores. …

Read the full post here : Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores

Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline

Home care for persons in late-stage dementia is very challenging. In a series of interviews, Dr.Soumya Hegde, Bangalore-based Consultant Geriatric Psychiatrist, discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions. Part 2 discusses how to get medical attention, stay in touch with doctors, and cope with the deteriorating medical status and related decisions. …

Read the full post here : Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline

Home care for late stage dementia, Part 1: Prepare for home care

Home care for persons in late-stage dementia is very challenging. In a series of interviews, Dr.Soumya Hegde, Bangalore-based Consultant Geriatric Psychiatrist, discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions. Part 1 discusses how to organize the home and prepare for smoother care for someone with advanced dementia. …

Read the full post here : Home care for late stage dementia, Part 1: Prepare for home care

Website updates: Log

For those who have visited the site before and want to know what has changed since their last visit, we strongly recommend that you read the page(s) again, as the pages are reviewed and updated on an ongoing basis. New pages are added, too. Check the menus on top or see the site map.

The website update approach and some significant logs can be seen here: Site update notes.

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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

Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates

Vijaya is a Mumbai-based qualified accountant, who set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life, and the heart-break and decisions and dilemmas involved. [note]

Please tell us about your father’s medical problems in the last year of his life, and the overall care arrangements you and your sister used to support him.

My father passed away in June 2011 at the age of 80. He had developed dementia caused by Binswanger’s disease and multi infarct (vascular dementias) for over 12 years, and he also suffered from other medical conditions like hypertension, age related arthritic conditions, and later UTI and heart arrhythmia. My mother, and later my sister and I took care of him over the years.

My father was not ‘bedridden’ for most of what turned out to be his last year of life. Had we allowed him to, he would have loved to stay in bed. He was very weak physically but was awake for many hours during the day, and also in the night. Sometimes he would not sleep at all for a couple of days and later compensate by sleeping all the time and then he had to be woken up for bath time, mealtimes, etc. (sometimes he would even fall asleep during his bath 🙂 ).

I had suspended my career and returned to India so that I could stay at home all day. I took care of the housework and the daytime activities of caregiving. Usually my sister would spend time in the evening with him after she returned from work; she would feed him dinner, give him his medicines, and put him to bed.

Usually when he was awake, my sister and I would walk him around the house 2-3 times a day. He used a walker, and we had to physically support and assist him as he walked. During the day, we would seat him near windows. From one window he had a view of a road and from another, he could see a garden. Also, for some hours, especially at mealtimes, we seated him in front of the TV because he usually liked watching cartoons.

Read the full post here : Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates

When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law

Neena (name changed), a chartered accountant who left her professional work to look after her mother-in-law, describes the challenges and heartbreak of home care of a bedridden patient with multiple medical problems. An earlier interview of the care (when the mother-in-law was not bedridden) is available here: Caregiving challenges, trained ayahs, depression: a caregiver’s story.

Please describe the circumstances that led to your mother-in-law becoming bedridden.

Ma is now 86 and suffers from multiple medical conditions, including heart problems, osteoporosis, Parkinson’s Disease, and dementia.

Getting her (Ma) to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times

Over the last few years, she had become increasingly dependent on the hired help for walking, and also grown very scared of falls. When she was taken for walks or to the bathroom, she often got confused about how to lift her legs to walk, and her legs would get sort of locked, and she had to be repeatedly prompted about which leg to lift, about moving the leg forward and so on. When our regular help went on leave and we had a substitute helping Ma, this substitute did not know how to handle Ma at such times, how to coax her to walk and so on, and others had to help. Multiple instructions often confused her even more and she would completely stop movement and her body would become stiff. Getting her to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times and this was a huge task as Ma had become heavier with absolutely minimal exercise!!

Read the full post here : When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law