Bharathi, 57 years old, has a degree in psychology and is a social worker who volunteers some time with dementia patients. When her 83 year old aunt started behaving strangely, she realized that the symptoms could be dementia, and gave the family brochures and literature on dementia. This led to a proper diagnosis and the family was able to learn how to help the aunt, who is now much better and happier. In this interview, Bharathi shares her story. [note]
Could you share the salient events prior to the diagnosis?
My aunt and her family used to live in Vizag before they moved to Bangalore. My aunt is 83 years old. Her husband (my uncle) is 90 and very active and articulate (he writes stories). They live with their eldest daughter (60 years old) and her husband, who is 75 years old. Another daughter is in the USA.
Around eight years ago, Aunty lost her son, and this was a very big shock to her. She also started becoming forgetful, for example she would forget to switch off the gas. She put on weight. All this was diagnosed as a thyroid problem, and doctors said that the problem had probably been there for a long time. However, her forgetfulness continued even after treatment.
After coming to Bangalore, Aunty seemed worse. She fell down twice on her way to the bathroom one day. She was unable to get up the second time and became bedridden after that. Doctors who checked her said it was “old age” and that she might have suffered from a stroke or something like that.
Aunty deteriorated rapidly after that. Though she talked about old times, she sounded confused and was often unable to express her needs. She ripped off her diapers and soiled herself often. When her husband tried to clean her, she would get agitated. She also developed bedsores.
Aunty often shouted in those days, for example, shouting at Uncle because he was watching TV. She could not sleep at night and remained in an agitated state. Her voice also sounded different and more commanding, which alarmed and worried the family.
Another thing: Aunty could no longer tell what she was eating or drinking. For example, she could not make out whether she was having tea or coffee, and even immediately after a meal, she could not say what she had eaten.
The family was puzzled and worried by all this, and did not know what could have gone wrong. They felt she had totally changed, and suspected a mental problem.
I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia.
As my volunteer work included dementia patients, I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia. When they read what I had given, they also felt that this could be dementia, and decided to consult doctors to get a diagnosis.
Your aunt was placed under observation after the diagnosis, right?
By the time Aunty was diagnosed, the family was quite overwhelmed by the situation. They knew they would have to adjust many things to fit this diagnosis. Aunty had bedsores, she often shouted, she would not lie straight, and it was very difficult to clean and bathe her. They decided to place her under observation for a month at a specialized ageing and dementia centre where experts could observe her and help her improve while the family made the required adjustments.
…the family started understanding more about dementia. They learnt how they could communicate with Aunty and help her.
Aunty’s younger daughter, based in the USA, was familiar with dementia. She came back to India to help. While Aunty was under observation, the family started understanding more about dementia. They learnt how they could communicate with Aunty and help her.
Uncle felt very lonely at home without Aunty when she was under observation. He felt he had no one left at home with whom he could share things. After so many years of living together, he was used to talking to her and he missed her a lot. But the family needed this time to adjust to this new phase.
How did the observation phase change your aunt?
Aunty had improved a lot when she returned home after the one month under observation.
One very important part was that she had stopped shouting. This had been a major problem earlier.
Another thing was that she was no longer ripping off her diaper, which made it much easier for the family to ensure that she remained clean and hygienic.
Her bedsores had also healed, and she was able to lie straight in bed.
Aunty also seemed much more cheerful and talkative, and was no longer agitated.
, when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month.
One thing, though. At the end of the one month stay, when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month. She has told us that she wants to stay at home with all of us around her. I think one reason she is more open to talk and listen is that she doesn’t want to be sent to a hospital. The very sound of an ambulance frightens her.
How is care given at home now?
The family, having understood that she has dementia, is now fully set up to help her.
For example, they now have a hospital bed for her, so that she can be made to sit up for meals and can also be lowered easily. They have put an air bed to prevent bedsores. They also have a nurse who comes during the day to bathe and clean Aunty and help in other chores.
In addition to this, the family has made a lot of effort to understand what Aunty is going through. They have adjusted their way of talking to her to take her dementia into account, and they have also learned how to help her. The daughter from USA is also working hard to see if she can help her mother improve.
One thing to remember here is that everyone in this house is a senior citizen. Aunty is 83, and her husband is 90. Her eldest daughter is herself 60 and caring for a bed-ridden patient is tiring for her. The eldest daughter’s husband is 75, and needs physiotherapy because of back problems. In spite of this, everyone is managing to take good care of Aunty now that they understand the problem.
How is your aunt doing now?
Aunty is doing really well now.
…she admits that she is forgetting things, and sometimes asks when she will get better. She no longer gets angry or agitated …
She talks a lot about old times. Sometimes, she sings old songs. She also forgets a lot, but she admits that she is forgetting things, and sometimes asks when she will get better. She no longer gets angry or agitated, and is therefore easier to take care of.
Aunty loves to have her family around.
She still has problems in the way she understands the people around her. For example, she calls her daughters “akka” as if they are her sisters. She calls her husband “father”, but when she is asking us where he is, she will say, “Where is your uncle?” She is also not able to recognize the photograph of the son who died eight years ago.
But though she mixes up relationships sometimes, she knows we are all family.
But though she mixes up relationships sometimes, she knows we are all family. She recognizes us when prompted, and sometimes even otherwise. She particularly enjoys seeing her grandchildren. When people visit, she acts like a hostess and tells her family members to give them something to eat.
Aunty wants to get better. Currently, she is unable to wear specs and is lying down most of the time, but maybe, if she improves, we will be able to make her wear her spectacles and she will be able to see people and things better, and even read again. We are hoping this will be possible.
Another thing we are trying is to ensure that she does not have to cope with too many changes around her. It is possible that the move to Bangalore was a setback for her because of so many changes.
Overall, Aunty seems quite happy and positive, and the family members understand what she is going through and have changed their way of doing things so that she is comfortable and happy.
Thank you for sharing, Bharathi!
Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience.