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Ganga Prem Hospice Patients

INDIA, Gohri Maphi, October, 2017
Happy at the Hospice
"Where were you?! You didn't come to see me today", says the seventy-year old Sharbati Devi excitedly and with a slightly complaining voice to a Ganga Prem Hospice staff member who has just arrived for her evening shift. Sharbati smiles and also cries quite easily. She is happy when she has visitors, even if they are only the hospice team members who come in to check on her at regular intervals when they are on duty. When they leave the room, or are not there, she expresses how sad she feels.

   

Sharbati is a widow who has been more or less abandoned by her step-family. She has no children or close relatives of her own. She was admitted to the Ganga Prem Hospice inpatient facility after the hospice team had cared for her at her step-son’s home and observed that she needed inpatient care and support.

A visiting doctor with Sharbati Devi
A visiting doctor with Sharbati Devi

A resident of Rishikesh for many years, Sharbati got cancer, and had some treatment, but did not want or could not afford it any further. Her sister's daughter who lives in another city showed some interest in her treatment, but owing to lack of support from her immediate family, not much could be done.

Sharbati loves it when she is brought new clothes or other small presents, so the hospice team makes sure to get something or the other for her as often as possible. She thoroughly enjoys the attention of having her hair combed and her body oiled by the nursing assistants of whom she has become especially fond. Sharbati often sits outside in the balcony and enjoys the view of the fields around the front of the building or of the river and forests at the back. As it gets cooler she enjoys sitting in the sun on the wide back verandah where she watches out for any visitors who might sit down near her for a chat.

 

INDIA, Gohri Maphi, August, 2017
A Lonely Widow Enjoys the Inpatient Facility
Fifty-two-year old Guddi Devi maintains a cheerful disposition most of the time. She looks gaunt, but that is not surprising given her advanced stage cancer.

One often finds her sitting on a chair in the spacious outdoor corridors of Ganga Prem Hospice, enjoying the cool breeze in what is otherwise rather warm weather. She also spends time sleeping in her room, reading the 'Gita' and chatting with another patient's mother, whose room is next to hers on the first floor of the Hospice. "When is the evening tea going to come?" asked Guddi Devi, to which the patient's mother replied, "Wait for the bell to ring.” Like clock-work the bell rang from the kitchen just a few seconds later indicating that it was tea time at the Hospice. 

Although Guddi Devi is a financially underprivileged widow who lives alone, she has an adopted son who is married and has children. He sometimes comes to see her at the Hospice but generally she is alone. Guddi Devi likes company and feels happy with the Hospice staff and other patients around her. When she was visited by the Ganga Prem Hospice medical director during his rounds she said to him, "I had not eaten ‘roti' for a year when I was at home. It is only here that I have started to eat for the first time.” She calls the Hospice “ashram," and said to a Hospice worker, "I find peace here, I am not going to go back.” 

   

Due to her medical condition, Guddi Devi sometimes gets confused and childlike. She forgets where her room or the bathroom is but she is watched round-the-clock by the Hospice staff and cared for in all her daily needs. 

Guddi Devi passed away peacefully on the 3rd September 2017

Motiram and Santosh at the local hospital
 

 

 

INDIA, Rishikesh, 1st May 2017
Elderly Couple Lose their Home
Motiram and Santosh are a very simple childless couple who have been turned out of their job and home by their employer and landlord who says he does not want a death in his house.

The Ganga Prem Hospice home care team has been visiting an elderly couple in Haridwar. They live in a broken down shack in their employer’s garden. The couple, who cooked rotis for the owner’s dogs and cleaned his house, were told to vacate the hut when Motiram’s cancerous neck tumours grew to a size which could no longer be hidden. Although the team tried to remonstrate with the employer he was adamant that they had to leave. The couple requested one day’s grace so that they could visit the GPH clinic and see Dr Dewan.

Motiram walked slowly into the clinic and lay down on one of the beds while Santosh sat on a chair nearby. The GPH nurses cleaned his neck tumours as he waited to see the oncologist. After a while Motiram called Santosh over and spoke with her in his indistinct speech. The team caught the word ‘hungry’ and asked Santosh if he was hungry. She smiled in a slightly embarrassed way and replied, “No, he’s asking me if I’m hungry.”  They were both hungry. Two thousand rupees a month doesn’t go very far even when you are only two people. Volunteers quickly brought fruit juice for Motiram and tea and biscuits for Santosh as neither of them had eaten anything since the morning. The snack was followed by a meal after they had seen the doctor.

The counsellors asked Santosh what her plans were now that they have been thrown out of their home. She said they were thinking of going to her brother’s house near Delhi. When asked who would look after her husband’s wounds, she said she would manage by herself. She was asked what she understood about cancer. It wasn’t much, although she said she knew it didn’t get better. “What shall we do now then?” she asked looking at the counsellors with a childlike trust.

   

The Hospice team swung into action. Dr Dewan prescribed an anti-cancer drug that might help reduce the size of the tumours and the couple was taken to a nearby hospital for it to be administered along with glucose and other medicines to give Motiram a little strength. 

Motiram and Santosh at the local hospital
Motiram and Santosh at the local hospital

A few days in the hospital might give the team time to find somewhere for them to stay until the Hospice opens.  Arrangements were made for the couple’s meals and the next day Santosh was taken back to her home to collect their meagre possessions. In the meantime a GPH nursing assistant sat with Motiram and the Hospice nurses dressed his wounds.

It is not easy to find a place for Motiram and Santosh as, like the landlord, few people want the possibility of a death in their house. GPH is enquiring in an old age home and other hospitals as well as in local guest houses, hoping to find somewhere where they can stay until the Hospice can take inpatients. Motiram’s wounds need daily dressing and he has difficulty swallowing so the team is hesitant to send them to the brother’s house although it may be the only option for now.

Update: 9th May
 
On 6th May Ganga Prem Hospice moved Motiram and his wife to Dehradun to stay in a room at a children’s home which was run  by the GPH supporters Sai Soham Kalyan Samiti but as Motiram did not seem to be well, he was first admitted to the Subharti Hospital nearby. Over the weekend his health deteriorated rapidly and on Monday the 9th after a few hours in the ICU he passed away. Subharti medical college hospital did all they could to make Motiram and his wife comfortable during his last few days. As it was late in the afternoon when Motiram passed away the hospital kept his body until the morning. The elderly couple had no one to help them,  so members of Sai Soham Samiti bore the expenses of the cremation and also came to do  the necessary ceremonial  rites. Santosh’s brother, their only relative,  had been informed and although in the evening he had said it was too far and he could not come, he did in fact arrive at the right moment and Motiram‘s cremation was completed smoothly.
 
Ganga Prem Hospice bore the expenses of the couple’s stay in hospital and were able to persuade Santosh’s brother to take her home with him.
 
 


INDIA, Haridwar, June 2016
Young Mother in Pain
Suman Kashyapa is a 35 year old mother of four.  She came to GPH crying with pain and beset with worry for her family.

   

Suman’s pretty face was streaked with tears as she came from the oncologist to the palliative care consulting desk. Her husband looked pale and distraught as he looked on helplessly clutching her medical reports in a shaking hand. Suman’s six year old daughteralternated between smiling shyly at the spiritual counselor and looking up gloomily at her mother.

Suman at the GPH palliative care consultation desk
Suman at the GPH palliative care consultation desk

After checking all the symptoms the palliative care doctor gave Suman some medicine and she was taken to a bed where her pain could be monitored.  After an hour when there was still no relief the medication was changed and after another hour she had gained substantial relief.

In the meantime her husband was questioned about their financial situation and advised how he could apply for financial help for palliative treatment. The family income is only Rs 3000 a month and they have borrowed Rs 75,000 which was spent on Suman’s treatment.

Suman was still crying from pain and telling the counsellor that her mother-in- law was not well enough to cook and so her husband was having to do all the work at home.  When he was working at home it was not possible for him to work as a casual labourer which is the family’s only source of income. “He has lost so much weight.” she sobbed, “He is only half the size he was.” Asked if her husband cared for her she replied that he did everything for her and was worried about what the children would do if she died. She says she has apprenticed her two sons aged 10 and 13 as bicycle mechanics. Although they don’t earn anything now at least they will have a trade later, she explained, but she was worried about the two youngest, aged 8 and 6, and wonders who would look after them if she were to die. Suman told the counsellors that both she and her husband believe in God and worship at home but now that she couldn’t always bathe she wasn’t sure how to continue her prayers to the Divine Mother who she believes protects her. She was gently advised on how she could worship even without having her bath.

Suman was put on the Ganga Prem Hospice Home Care programme and visited on the Tuesday after the clinic at her home in Haridwar by the GPH Home Care team. The tiny room where they live has a tin roof and no running water. The team took food rations with them to help the family. On Wednesday Suman and her husband came to the local cancer hospital where Suman’s admission and the start of her chemo therapy was sponsored by the Hospice.

It is often quite difficult to help illiterate families with gaining sponsorship. In Suman’s case we have now discovered that Suman is only her pet name and that her actual name on identity papers is Swapna. GPH staff are trying to solve the resulting difficulties, with the hospital seeming reluctant to change all of the paper work which has already been put in place.  The sponsorship application will also have to be resubmitted: GPH team will help as it is too difficult for the family to manage this alone.

Update 13.7.2016

Ganga Prem Hospice’s supportive neighbour in Rishikesh, the Rajasthani Mishthan Bhandar, kindly donated 25 kg of Rice,  25 kg of wheat flour,  1 ltr of fruit juice,  10 kg of dal and Rs 1100/- cash to the struggling family so at least they will not have to stay hungry for the next month.

Update December 2016

Suman Kashyap, a 35 year old mother of four, suffered from an aggressive sinus cancer that rapidly spread throughout her head and neck. After consulting the oncologist at GPH’s cancer clinic in June 2016, she was added to the home care roster and began receiving regular visits from the palliative care team. Suman and her family shared a single room with a dirt floor, a tin roof and no running water in the city of Haridwar. Her dedicated husband tried his best to understand and implement the doctors’ instructions for her complicated medications, while also juggling his work as a manual laborer and the care of his young children.

In addition to providing regular medical visits, GPH helped the family apply for financial support for palliative treatment though the Hans Foundation, and facilitated donations of food rations, such as rice and wheat. GPH was also able to find a job for one son at the Rajasthani Mishtan Bandar restaurant in Rishikesh, whose proprietor regularly and generously contributes to the hospice cause. Though the son’s salary is small, it is a welcome boon for a family whose total monthly income is only around 4000 rupees ($60 USD.)

 

Suman always had a smile for the GPH team
Suman always had a smile for the GPH team
GPH palliative care doctor with Suman
GPH palliative care doctor with Suman

 

 

Suman’s gradual decline was difficult to witness, even for the seasoned medical team, as her pain increased, her face grew more disfigured, and she became completely bed-ridden. The living conditions at home made her days all the more difficult, and everyone wanted to see her comfortably cared for in a hospice bed. For a time there was hope that perhaps Suman would be among the first few patients to move into the GPH residential hospice where she would receive 24 hour pain management and complete nursing care. In this scenario her young children could also be spared the memory of her suffering. But on Dec.13th she passed away after a final visit from the home care team.

 

Suman’s last bath
Suman’s last bath
Suman’s last meal
Suman’s last meal

 

Two full-time GPH nurses and palliative care specialist Dr. Brenda Ward visited Suman as usual on Dec. 13th, but this time they brought new clothes, a warm shawl, a heavy pink bed sheet and some fragrant soaps and lotions along with the usual medications and wound dressings. With love and kindness they carefully bathed the patient, cleaned her mouth, changed the linen, and dressed her in the new clothes. Through the veil of her pain and weakness, Suman was clearly pleased by the much needed personal care. She slowly joined her palms together in gratitude to the hospice team, and a few hours later she passed away.

INDIA, Haridwar, May 2016
A Child Who Wants to Play
Despite the fact that Reshu is suffering from a brain tumour and is paralysed on her left side she is a typical lively twelve year old who loves to play and dress up.

 

Reshu Saini first came to Ganga Prem Hospice at the Haridwar cancer clinic in April, 2016 but she has endeared herself to the team and has in turn become very fond of them. For a child who until recently spent her days in a small dark room lying alone watching a tiny television screen the advent of a group of people who come especially to see her is something very miraculous. Now Reshu constantly phones Sister Philomena asking her when she is coming. Sister Philomena, who was formerly a pediatric nurse, showers her love on the little girl. When Reshu knows the home care team is coming, she loves to dress up, put lipstick on and pose for photos with the big teddy bear that GPH has given her.

   

Reshu’s mother is a widow who was formerly working in a shop leaving the child alone at home all day however she has recently given up her job as Reshu cannot move about alone anymore. The young girl and her mother live on her mother’s widow’s pension and a tiny income that they get from renting out their second room to a barber. She also has one sister who lives with her grandparents who run a chai stall. 

Reshu with a teddy bear given by GPH
Reshu with a teddy bear given by GPH

Ganga Prem Hospice has sponsored an MRI for Reshu and now it is being decided whether or not any treatment can help her. If any treatment is possible she will need sponsorship as the little family is already hard put to make ends meet.

Update 1.7.2016
 
When the team visited Reshu today she told them it would soon be her birthday. She said ‘ I want a birthday party this time, because it will be my last birthday.’ When the social worker asked her why she said that, she laughed and said ‘ I know what all the doctors are saying. I am going to die, so this will be my last birthday and I want a big one!’ The Hospice team will do what it can to fulfill Reshu’s fun loving wish.

Update 12.7.2016

Following the request of our twelve year old patient for a birthday party to enjoy as she knows it will be her last, the team organised a surprise party at the small home Reshu shares with her mother. Shunned by her friends due to the stigma of cancer, Reshu never the less makes the most of her life and always greets the team with her delightful smile.

She loves dressing up so the obvious choice of gift was a new outfit in her favourite colour, pink. She immediately put it on with the assistance of her mother; her brain tumour has resulted in weakness of her limbs. Her beam ensured all knew she was very pleased with her present.  Gift opening was followed by party snacks and chocolate birthday cake for like most children, Reshu loves chocolate.

 
Reshu blows out the birthday candles
Reshu blows out the birthday candles
GPH team dancing and singing with Reshu
GPH team dancing and singing with Reshu

 
 

Lots of photos were taken by all, including on Reshu's phone, to ensure her 13th birthday is always remembered. Her mother appeared to be delighted with the event.

No party is complete without music. Reshu chose some music and led the group in singing. Everyone particularly enjoyed the track 'Lets party all night!' The group danced together until Reshu was tired. Some beautiful memories were made for all present due to this very special 13 year old.

Update on Reshu: June 2017

Throughout the past year, GPH home care visits to Reshu continued regularly. Gradually she lost the use of her limbs although her smile almost always remained as wide as ever. Supporters of Ganga Prem Hospice provided the mother and daughter with regular food rations and other household articles  and from time to time Reshu was taken for outings by the team and volunteers. Reshu looked forward to these outings and thoroughly enjoyed having company which she so much missed at home. As time went on the team gradually discovered that Reshus‘s home life was more complicated and distressing than appeared on the surface and that Reshu was very much in need of care outside her usual living conditions. In February, GPH kept Reshu in a local hospital for a couple of weeks where she was looked after by volunteers. At that time, GPH was unable to find a permanent refuge for her but the opportunity to really help her came when the inpatient facility opened. 


 
Reshu with a new friend from the village
Reshu with a new friend from the village
A GPH volunteer with Reshu
A GPH volunteer with Reshu

 

On 12th June Reshu was admitted to the GPH inpatient facility. At 14 years of age, she is our youngest inpatient. In spite of her condition, which has now made her completely bedridden, she has a very positive attitude to life. Smiling and laughing, she attracts many visitors including most of the GPH staff. Two children from the village have also befriended her and come daily to spend time with her.  They came to know about Reshu through one of the GPH staff. As Reshu has been losing her appetite, her new friends have been bringing her favorite foods to reignite her interest in eating. Chatting and being with her young friends for hours on end, Reshu is enlivened and relieved of her woes.

The GPH team understands that it is vitally important for Reshu to stay at the Hospice and we would like to make an appeal for financial help to support the expenses needed to keep her with us. Please consider sponsoring Reshu’s stay. Rs 1000  a day are needed to cover the costs of her care and food for both her and her mother who is at present staying with her.

 



Update: 5th July 2017, Reshu’s Birthday Party

Reshu's 14th birthday preparations began the day before with trips to the bakery shop for a cake, snacks and birthday accessories.

On the 5th July, Reshu's birthday, the GPH staff decorated Reshu’s room and the corridor outside her room with balloons, colourful tustles and more. Reshu's family including mother, her sister, uncle and nani were also present to join in the celebrations.
 

The decorations outside  Reshu’s room
The decorations outside  Reshu’s room
Dressing Reshu for the party
Dressing Reshu for the party

Nani ma had bought a beautiful pink tshirt which Reshu was delighted to wear for the occasion. Her sister, GPH staff and friends from the local village all took turns to adorn her with lipstick, eyeshadow and jewellery. Reshu looked very beautiful and happy and said she had never had a birthday like this before. Reshu smiled and laughed with the floods of visitors entering her room to greet her.

While all this was going on, the kitchen staff and volunteers were lovingly preparing pakoras for the party. Lots of snacks and biscuits and Indian sweets and drinks were also provided.

The area outside Reshu’s room was beautifully arranged with the food items and a stunning pink flowered iced cake was placed in the middle.

Reshu was brought out of her room by gph staff lying down on a trolley. We took a photo of the cake to show Reshu as she is unable to turn her head. In all the excitement, everyone stood around Reshu and began singing ‘Happy Birthday’. Nani ma took a candle from the cake and got Reshu to blow it out. Dr Aditi lit the firework candle which shot up into a beautiful sizzling flame. The cake was cut with a knife which sings happy birthday. Nani ma fed Reshu the first piece of cake and her mothered smeared cake all over Reshu's face. The party had really begun. There must have been about 50 people present and all were offered endless amounts of cake and snacks.
 

Dr Aditi lighting the candles
Dr Aditi lighting the candles
Dr Aditi lighting the candles
reshu with cake on her face


The most touching moment was about to come. Many of GPH staff in turn came with offerings of money and other gifts to Reshu. Even those on relatively low incomes offered what could be thought of as large sums of money to her.  The team of electricians also joined in taking photos of the lovely Reshu and gifting her with money. Reshu thanked everyone graciously.

 

Reshu enjoying a fruit juice
Reshu enjoying a fruit juice
Reshu at the end of the party
Reshu at the end of the party

The most touching moment was about to come. Many of GPH staff in turn came with offerings of money and other gifts to Reshu. Even those on relatively low incomes offered what could be thought of as large sums of money to her.  The team of electricians also joined in taking photos of the lovely Reshu and gifting her with money. Reshu thanked everyone graciously.

 
 



PATIENT'S STORIES
Cancer patients and their loved ones are invited to write to us about their views, thoughts and feelings. We will include as many letters, articles and stories as is possible in these web pages.

Please send your article to Nani Ma at nanima@gangapremhospice.org.

 
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