Gift's poem

Below is the poem Gift wrote while a patient in our Soweto hospice:

THE GIFT

By Gift Khontyaphi

 

My Lord I ask you now,

Help us children and me;

To grow up until we die.

I thank you Jesus,

Because you help me when I'm sick,

I thank you Jesus for our mothers,

 Our doctors, our sisters.

They love us so much.

Please Lord help me

To grow up until I die.

I have lots of sickness

Since I have been small

Now I am better

I feel well.

To feel sick is not good

I feel tired

And don’t want to drink my medicine,

I feel sad, I want to see and be with my family.

To die is not alright.

Don’t think about dying.

If you think,

 You are going to die fast.

Because to die is not alright

I want to grow up,

Grow up until I die.

My HIV is not alright 

I want to drink my medicine

Please Lord give us Power

I know children want to grow up

But if you don’t take your medicine

You will die

I feel bad, I feel sad,

I feel naughty, cross and angry,

I feel everything has been stolen from me

My life has no control.

It makes me want to be naughty

Please Lord help me.

My Lord I ask you now,

Help us children and me;

To grow up until we die.

 

I want to grow up until I die

Below is a post from one of the pediatricians at the Soweto hospice, Louisa Ferreira.  Read it carefully- it's important...

The saying that always hold true to my heart is the one that says” To much is given, much is expected”.  It humbles me to see how this saying resonates into the visit from our Sister Hospice – the Suncoast Hospice. The drive and passion and above all the love and dedication shown by our “American family” has been nothing but celestial.  The American people are very fortunate to have such devoted and caring people working within their own communities.

Soweto is a developing area filled with a great amount of destitution and poverty.  It has had a very difficult political past and it has begun to pick itself up out of the trenches. However our HIV pandemic in South Africa is a huge stumbling block, our infection rates are so high, that the mere plugging of the leaks in the proverbial dam wall is no longer effective.  Our dam is ready to break and it is causing great devastation in its path.

Currently, we are having a great number of infected children and AIDS orphans.  Our children’s caregivers: their mothers, fathers, aunts, uncles, brothers, sisters, grand parents and neighbours are dying and so are the children themselves.  HIV is a disease that wears many masks and it infiltrates itself into every person in the family so violently and without restraint.  Our Hospice has been hard hit by the virulence of this disease. The majority of our children will do well if started on medications early enough, but for those who have poor social circumstances (which is too common) and are unable to be compliant on their medications; or who have been started on the medications too late in the disease process, their future remains a very uncertain place for them. Many of them will end a life far too young and with so much undeserved suffering and pain.

I had a 13 year old male child, called Gift, recently in our Soweto Hospice who is HIV positive and TB infected, he is becoming more and more resistant and poorly controlled on 2^nd line ARV (Antiretroviaral) treatment due to poor  social circumstances, poor drug compliance and also for defaulting treatment.  Gift was refusing to take his medication due to the great pill burden of taking more than 15 different medications per day.  This in turn has caused him not only to become resistant to his ARV’s but also his TB medications. Currently Gift is an inpatient at a local Infectious disease hospital, because he has multi drug resistant TB. He is away from his community and family and will have to stay admitted until he is no longer infectious, this can take many months or even years. 

An important thing Gift once told me was that despite his sickness he wanted to grow up until he died.  What wise words for such a young boy, the profoundness of its simplicity and honesty.  We cannot cure everyone but we can allow our children to experience their childhoods and to alleviate their suffering and provide them with enough peace, comfort and support that they can truly: “Grow up until they die”. This principle I think is our Mantra for Hospice.  We want despite undefiable odds to allow our patients to experience LIFE and to live their dreams despite the final outcome that one day they may be taken from their families and die due to their illnesses.  Our children need to experience their child hoods and to grow up before they die! Hospice is a place of living, a place for life, a place of living even for some in the umbrella of death.

Thank you all for your generous support to our country and Soweto Hospice, your generous donation extends past its monetary form to that the angels can only speak of.

GOD bless you all on your life’s journeys,

Regards and Respect

Dr Louisa Ferreira MBCHB DCH(SA)

 

 

Soweto Hospice home visit

One Patient at a Time

Dr. Amy and I visited Soweto Hospice patient homes and saw the conditions that the Soweto Hospice sisters (nurses) and community care workers (like our home health aides) are confronting when caring for their patients. The sisters go over medications with their patients and evaluate their patient's status. They travel by car with their community care worker. Sisters see their patients about once a week. They also deliver food to patients who would otherwise not have anything to eat.

We encountered one patient who was in a particularly desperate situation. Her neighbor greeted us and told us of how badly things were going. 

She has had a stroke, has AIDS and is bedridden. She is unable to get out of bed on her own. Her neighbor brings her something to eat in the morning, but it is very little. There is no food in the home. The food the Soweto Hospice brings this patient is stolen by people living around her. There is no one in the home who will care for her and she has no way of caring for herself. 

Her community care worker is able to visit her two to three times a week and change her clothing and sparse linens. Community care workers visit their patients as often as possible but their case loads are high and they travel on foot. In between these visits this patient lies in bed and listens to a radio.

When we arrived at the home we were almost overcome with the stench of excrement. It had been three days since the last home care visit and the patient had been lying in bed since then unable to get out of bed. Her clothes were soiled and so was her bed. There were no dry clothes in her home. Dr. Amy, sister and community care worker bathed her and put a new diaper on her and put the least damp clothing on her. They turned her mattress over so the wettest side was on the bottom and replaced her linens with what was available.

The Soweto Hospice is reevaluating this patient's situation and is trying to place her in a long term care facility (similar to a nursing home).  

An update:  

Three days later at the weekly clinical forum meeting (similar to our interdisciplinary team meetings back home) that consisted of doctor, nurse, social worker and administrative staff, we discussed this very unfortunate patient.  All disciplines contributed to the discussion and a care plan was made.  Fortunately, a team member has a connection with one of the long term care facilities and planned to call her personally to ask for admission for this patient.  We also hope to bring her into the inpatient unit for respite while the final details of her transfer are arranged.  Before my eyes, this dedicated team of hospice individuals is working hard to improve lives one patient at a time.  

Amy Post-Grady, D.O.