Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver.
Please describe the patient’s state, how long you have been caregiving, and what your current caregiving involves. Tell us who else are involved in the care, and how the work is distributed.
My mother was officially diagnosed with dementia in May 2009 at age 78, though the symptoms were there at least two years before that. She is currently in the middle stage of dementia – she cannot read or write, does not recognise us, cannot bathe herself without guidance, has to be helped to eat, for example, she has to be shown how to handle the spoon. Mum gets delusional in the evenings, and begins talking to the fan or the cupboard, and says she wants to go home.
Mum’s dementia onset probably occurred after my father passed away in 2004. I have been looking after her for about 2 years now.
There have been two major setbacks in these two years.
Read the full post here : A dementia caregiver shares her story and her caregiver wishlist
We need a simple explanation of dementia and basic caregiving skills to orient an attendant for dementia home care.
This page presents a note that families can use as a starting point for this orientation; the document includes pictures the attendant can be shown. It is available using a Slideshare viewer as well as through a download link.
Read the full post here : Orientation for attendants for dementia home care
Patients start needing constant care. Families often need trained attendants to handle full-time care.
What caregivers can do: Understand various arrangements for using trained attendants. See what suits the patient and family situation. Explain the patient’s care to the attendant. Set up your home for the attendant’s presence. Take safety measures. Supervise attendants and use them effectively. Handle their absence and other problems.
Many families feel they need a good attendant once the patient needs more attention and the care work gets tiring. They look for ayahs, maids, servants who can be trained, attendants hired from agencies, etc.
But it is difficult to get good attendants. The few available attendants do not understand dementia, or are unreliable. Families also face problems trying to arrange their home to use attendants effectively.
- See whether you need to consider trained attendants.
- Locate sources for trained attendants.
- Check if the attendant is suitable.
- Explain patient care to the attendant.
- Make adjustments for the attendant.
- Ensure safety and security.
- Supervise and support the attendant.
- Handle the attendant’s absences.
- Summing it up….
- See also….
Read the full post here : Using Trained Attendants for Dementia Home Care
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
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
Vidya (name changed) is a doctor whose grandmother (mother’s mother) suffered from dementia. Vidya’s mother and aunts took care of the grandmother, with some support from Vidya. The family finally reached a point when they could no longer handle the caregiving and had to move the patient to a long-term stay facility.
Could you give us background information about the case and the sequence of events?
Granny lived in my city for many years, staying with either my mother, or my aunt (my mother’s sister). The two houses were close by, and Granny would move from one house to the other whenever she felt like.
Granny suffered from a condition called Transient Ischaemic Attacks or TIAs. The first episode occurred when I was in medical school and I remember she was hospitalised. She recovered quickly and was back to normal. This was followed by one or two smaller episodes of shorter duration, during which she inadvertently passed water where she was sitting/lying. Apparently she seemed okay so it was not taken seriously.
Some time later, Granny took ill and started behaving bizarrely. For example, she once smeared her poo over the bed and the walls of the bedroom. We then called a psychiatrist friend who, after evaluating the patient, suggested that it could be a case of dementia.
As her other parameters were alright, we didn’t think it was necessary to take her to a hospital to assess her physical status and do investigations. Of course I did speak to a senior doctor at the time, who said that anyways nothing much can be done for such a patient.
But as time passed, the bizarre behavior worsened. At that time, Granny was living with my aunt, who was in her late sixties. My aunt found it very difficult to manage to take care of Granny on her own
Read the full post here : When you are in the rut of things you can’t think: a doctor-caregiver shares
Saraswathi Subramoney, 78 years old, is the caregiver for her 86-year-old husband who suffers from Parkinsonian dementia. The couple lives in central Bangalore in a well-appointed apartment full of curios gathered over the decades. Their children (they live in other cities) visit often to help and comfort, but Saraswathi is primarily responsible for her husband’s care and has to cope with it alone most of the time. In this interview, she shares the progression of her husband’s condition, her ways of handling care, and her feeling of exhaustion and overwhelm.
Can you describe the events that led to your husband’s diagnosis?
The first indication that something was wrong with my husband came around 3.5 years ago, when he fell down a couple of times. We visited Mumbai soon after, and consulted a senior doctor in a leading hospital there. The doctor assessed my husband, conducted various tests and scans, and finally declared that what happened to my husband was only “old age” (my husband was 83 years old). The doctor showed us the brain scans, pointed out some areas, and said the gaps were caused by “ageing”.
We returned to Bangalore. Over the next few months, my husband’s condition worsened to a point I found very difficult to handle. Examples of the behavior he showed were:
- Losing balance while walking or climbing stairs
- Fits of anger and shouting
- Insisting on going for “work” (though he had retired long ago)
- Insisting on going out for errands that were not needed (such as booking tickets at the railway station)
Read the full post here : My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband
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