Tag Archives: end-of-life decisions

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. …

Read the full post here : Home care for late stage dementia, Part 6: Tube feeding and related decisions

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

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

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

Late-stage dementia care

The dementia patient becomes fully dependent for all activities. The patient may be bedridden, and may even stop talking.

What caregivers can do: Set up the home for late-stage dementia care. Learn home nursing and other necessary skills. Use support systems. Stay in touch with doctors. Coordinate with the family for major decisions.

Almost all late-stage care in India is done at home by the family. This final stage may be short or may go on for years; the patient keeps getting worse and will finally die. Caregiving for patients at this stage is very different from caring for early or mid stage patients.

  • Set up the home for care.
  • Set up support systems.
  • Learn home nursing.
  • Understand the patient.
  • Remain alert on problems related to long stay in bed.
  • Remain alert on other medical problems of the patient.
  • Learn about end-of-life care decisions and consult with family.
  • Stay connected with the patient.
  • Handle grief.
  • Resource: Video from a caregiver from India sharing her experience.
  • Resource: Instructive videos and resources on home nursing.
  • See also….

Read the full post here : Late-stage dementia care