Jul 11, 2018

March-June 2018

Just imagine: the very center of Moscow, Manezhnaya square, the city festival, and the VERA Fund's pavilion, where visitors get their make-up done and their hair braided, where Nyuta Federmesser uses a full-size dummy to show how to take care of a terminally ill person, where people learn why they should stop fearing hospices. These are not dreams, but reality.

We did have our very own pavilion at the city festival “The Easter Gift” where anyone could not only get their make-up done, but also get to know the Fund's volunteers, try to care for a terminally ill patient under the guidance of Nyuta Federmesser, our founder, and sign up for an introductory meeting for our volunteers. 

  • We had visitors who asked: what is palliative care?
  • Who are volunteers and how much do they get paid?
  • How many hospices does our company have?
  • Therapy dogs and concerts in a hospice - this must be expensive?

It is so cool that we had a chance to answer all these questions.

We also had a chance to explain that, at the last stretch of a life's journey, when one cannot be healed, one can still be helped in a professional manner.

We could explain that volunteers are highly motivated people, which is why they help the Fund free of charge, in their own free time, and in different ways.

We could say that concerts and events which happen in the life of a hospice are free for us and for our patients.

This was an incredible experience for us and a perfect opportunity to tell the public about hospice life, events, and people who turn a hospice into a real home.

 

The spring and the first summer month have been busy for the Moscow hospices: many holidays were celebrated, dozens of concerts and master classes were held, new flowerbeds were made, and, amidst all that, we still had a chance to sit in the shade of the trees and enjoy summer treats and pleasant conversations.  Last but not least, the Center for Palliative Care saw a first wedding in its history.

Many people dream of saying “I will love you until the day I die”, but very few can actually say that it's true.  Anatoly knows that: he is a patient of our hospice. His wife Olga and he share many things: seven children (they had two of them together), eight years of love for each other, a few cats and dogs, and several chemotherapy treatments. 

This spring they got married in the Moscow Center for Palliative Care where Anatoly is staying. A clerk from the Civil Registry Office came to unite them in marriage, the donors gave them a wedding cake, volunteer musicians helped set the mood for the event, and their friends and children were there to congratulate them and celebrate together.

The couple met when Olga (a charity foundation's director) were looking for potential donors, but instead found someone who needed help. When she met Anatoly, he needed a cancer surgery. Later, they faced a long and complex treatment and remission, when two of their children were born. Recently, the disease returned, and Anatoly needed palliative care.

“If not for palliative care, we wouldn't have come to a conclusion that we need to keep living, get married, and have a celebration. The thing is: what's the point of grieving? We enjoy every new day that comes and think about other things we'd like to do.  We are extremely grateful to the doctors and the whole team for helping us to get back on our feet. They gave us a chance to not think about the difficult part of the disease. Instead, we can focus on the joy: the joy of having each other, loving each other, and living,” says Olga.

One, two, three -- the bride tossed the flowers to the crowd of girls of all ages, among them, patients in wheelchairs, nurses, and volunteers. Of course, later there was champagne, appetizers, dancing, and jazz music.  Anatoly cannot stand on his feet anymore, let alone dance with his wife, but his hands kept moving non-stop, following the music. It does no matter how much time one has left: there is still enough time to do all that we can.

 

 

Our foundation has been spending the average of 258791$ to cover for the following needs of Moscow hospices:

01.03.18 through 30.06.18

Medical equipment – $28663

Meals – $2252

Financial support to hospice staff – $112435

Coordinators’ work – $110027

Other expenses - $5414

 

*We thank Veronika Demichelis for her generous help with rendering this text from Russian into English.
Jul 11, 2018

March-June 2018

We want every child to have a fun summer, even if a child is terminally ill. 
This is why we are so excited to receive letters and pictures showing a mom and a daughter hiking in the mountains or taking a walk in a park by an apartment complex and squinting in the sun together. 
This makes us happy because we know that these children could have been in the ICU, and doctors would have been trying to convince their parents to not visit anymore.
However, we can change this. 
VERA Hospice Charity Fund supports families with terminally ill children who have no access to palliative care in their city or village. 
We get involved if parents have lost hope in getting help from the government and receiving that which they are entitled to: functional wheelchairs, medicine, and diapers. 
We are there for them if they think of their lives as “before” and “after” and if they need help handling the accumulated fatigue and pain. 
We help if they need to purchase medical equipment which costs an inordinate amount of money for a common family but will ultimately determine whether a child will live in the ICU or at home. 

 

Just look at the letter written by Masha's mom:

“Right before May 9, the two of us - Marusya and I - completed a “rally” of sorts: Simferopol - Novy Svet, 110 km. 

We spent 2.5 hours on the road and had 4 “pit-stops” for the co-pilot Masha :)

Masha is a true Russian: she loves fast driving (for us, 80-90 km/h is fast); she smiled all the way. Just towards the end of the trip she started whining a little bit, and I had to sing children’s songs loudly, which calmed her down a little.

Just like a sparrow in a Russian children's book who stopped by different friends for a meal, we, too, stayed in Novy Svet for a day and then spent two nights at my friend's place in Sudak. I didn't dare to go swimming as the water in the sea was only about 17 degrees Celsius.  This trip was a test drive of sorts, nothing planned, just like everything else in our life.

Then the weather turned, and we hurried back home. It was raining all the way back home; sometimes it poured so heavily that the windshield wipers struggled, and the car swayed on the road.  To make matters worse, Masha had trouble lying still, she even yelped and cried sometimes - her dystonia bothered her as it usually does in bad weather.  So, we made many stops, and our trip back home took about 4 hours. This was a real test for both of us.

It was a huge achievement for me, since I've only been driving for 5 months. 

And I don't know anyone who would have taken a trip alone with a child in Masha's condition. Masha can't hold her head up, can't sit, can't swallow, eats through a PEG tube, and has a symptomatic intractable epilepsy, partly controlled.

I drive “Zhiguli”, the 10th model, which has no power steering, so driving through the twists and turns of a mountain road is new and exciting for me, and I feel like a rally driver even at the speed of 40-50 km/h. 

If someone told me 3 years ago what we would be up to, I wouldn't believe them,” - says Olga, mom of Masha who is sponsored by the children's program of the VERA Fund.

All of this is possible thanks to your generosity. Thank you!

 

Below is the data on allocated charitable expenditures this time:

01.03.18 through 30.06.18

Medical equipment and its service … $146021

Equipment consumables…………..... $129960

Special nutrition……………............... $84612

Financial help to families …............... $24908

Transport services …………….......... $2499

Funeral services ……………............. $6900

Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $67872

Other expenses …………….............. $579

 

 

*We thank Veronika Demichelis for her generous help with rendering this text from Russian into English.

Mar 30, 2018

It would not have been possible without you

How can we make sure that every person gets help they need at the end of their life? We need resources: hospices, palliative care departments, home-based services; we need laws that would protect the interests of the patients; we need doctors and nurses, we need their hands that can ease the pain and ensure that our patients are treated with dignity till the end; we need volunteers and coordinators who can attend to our patients’ needs and provide them with care; we need publications and TV shows about hospice care so that people are not afraid to ask for help when they need it.

We strive to make sure that high-quality care at the end of life is available to all.
 
Highlights of 2017:

Olga, a hospice patient:
“When at the hospice, I am treated like a human being. I get stabilized so I can continue living for a while longer, enjoy my life and maybe learn something”.

 
Data highlights

  • A total of 16 coordinators provided for adult and children hospices and palliative care units in Moscow;
  • A total of 1400 events (joy carts, master classes, concerts, picnics and therapy dog visits) organized in Moscow hospices;
  • More than 2,000 volunteers donated 68,000 hours of their time to the fund and different hospices;
  • A total of 415 adult patients received support for their complex issues;
  • A total of 12 regional hospices and palliative care units received support from the fund (in the form of financial aid and resources).

 
Per Tatyana, the Chief Medical Officer for Palliative Care Center in Moscow, physicians providing palliative care need training on a daily basis. And we are talking not only about the constant need for additional knowledge in various medical fields; they also need to know how to provide social support, and at the same time they need special skills to communicate with patients and their families".

Data highlights

  • Russian and foreign experts provided training in patient care, pain management, communication skills, organizing assistance for severely ill patients to more than 500 medical specialists and social workers from Moscow hospices;
  • 600 regional physicians and nurses received training in palliative care for children;
  • 2990 physicians and patients’ relatives received free books and educational materials on palliative    care.

                        Without you, we cannot move the needle. With you – we can achieve a lot. Thank you!

 

Our foundation has been spending the average of 261516$ to cover for the following needs of Moscow hospices:
01.11.17 through 28.02.18

  • Medical equipment – $48639
  • Meals – $1150
  • Financial support to hospice staff – $106249
  • Coordinators’ work – $96279
  • Other expenses - $9199

 

*We thank Julia Linkova for her generous help with rendering this text from Russian into English. 

 
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