I do not automatically have contact with my patient care colleagues but my role as fundraiser means that I need to form a mental picture of those that our donors are investing in, so that I can explain why I mission after funds on a daily basis.
Today I went on a fact finding expedition to the nurses’ quarters and a Hospice nurse spontaneously shared with me the depth of connection, wonder and respect that most good nurses feel for their patients.
When it is a home care patient, there are numerous factors other than the clinical that are presented to the nurse and this is why any Hospice service uses a team approach, using case workers from various disciplines. The following story would have been a miserable depiction of all the woes and social ills that do exist, but for the warmth shown by Sister as she told it and the sparkle in her eyes that told me that she is driven by hope and spreads hope.
I expressed interest in the reason for BRAM Care Centre (BCC). Immediately Sister Malene’s thoughts flew to a terminally ill patient that is regularly admitted to BCC for three week periods to give respite to the family member who is her primary caregiver at home. With Hospice or other stakeholders referring and after an assessment, this wonderful 24HR service is free of charge to government patients. It may be accessed privately too, for those who can afford and need it or have medical aid.
Sister Malene’s patient is ending her days due to cancer that was diagnosed late. The patient then accepted treatment very late as she could not get to a place of acceptance easily. A growth which was removed grew again and is putting pressure on her spinal column so she has become bedridden and she has lost the use of her legs. The growth means that she can only lie on her sides which has resulted in two deep body sores that have to be dressed daily by her family member. The relief of a three weeks break for her caregiver is profound.
Sister Malene smiled as she spoke, showing great fondness for her patient, and the heartrending story of human complexity behind this patient emerged and revealed the degree to which a Hospice sister embraces the entire family; and how she includes all community resources in helping the family to make the best of an awful experience.
This patient is the dominant personality in a household of dramas and miracles. She has been imprisoned for interpersonal violence. Her man has for years been a drunk. Retreating ever deeper into the bottle, he spent most of his days with his head under a blanket. He was a seemingly hopeless case.
When Sister asked how the patient felt within herself and about her condition; if she felt hopeless; it was anger at having to have everything done for her that troubled intermittently. Therefore respite for three weeks for the patient from being dependant on her family is a very important palliation of suffering.
During one of the patient’s stays at BCC, something changed within the drunken man under the blanket and he too felt the relief of a break from her domineering personality. Given some peace and quiet, he was able to consider the seriousness of his wife’s illness and make a great effort. He got himself sober. When the patient came home from respite care, she found him with peace of mind, doing the dishes and laundry and staying awake all day. He became able to cope with life because he had a break. This is an awesome feat of recovery which I do not think would have been possible without the presence of hospice support in the household. I believe that he realised that he too, mattered, as the visiting nurses did not judge him but offered him counselling which helped him see that things could get worse if he could not respond to the family crisis.
I asked Gerrie Jonck, Hospice Social Worker about this family and wound down to the beginning of the story. It was our cancer patient’s small grandchild who was first referred to Hospice. He was failing to thrive and so was admitted for holistic care as the clinic knows that medicines alone are not enough. It was soon discovered that the child’s young mother, also HIV positive, was not able to show care for the child, the sick grandmother could not, the grandfather at that stage had his head under a blanket and so the child was placed in foster care with a neighbour, from where he could maintain contact with his own family. Then the neighbour became too ill to care for the child and an attempt was made to reconnect him with his mother by placing them in BRAM Care Centre together for a period of time to learn to take their meds correctly. Sadly the HIV positive mother abandoned her child there and went home. This forced the Hospice team and ACCV social worker to place him in a children’s home. For now, this is working well and the dying grandmother looks after her small, vulnerable grandson on weekends and holidays.
Department of Health provides the funding for Bram Care Centre and Breede River Hospice manages it. Continued quality of care is going to require philanthropic donations which are the fuel for the Hospice team. We are very fortunate that this service is available in Langeberg, may it go from strength to strength.
Amanda Frost – email Amanda@hospicebreederiver.org.za to become a philanthropic donor
Endnote: Breede River Hospice has been asked by the Department of Health to incorporate BRAM Care Centre, into its range of services. On dissolution of the NGO which founded and established the centre, the liabilities and assets of the NGO revert to Breede River Hospice. The official takeover of operations is 1st July 2016. Please contact 023 6265710 for further information or to access the ICF services.