Jess Mackintosh’s life took a challenging turn when her daughter was diagnosed with schizophrenia. Fuelled by a mother’s love, Mackintosh embarked on a mission to create a safe haven for her child and others facing this misunderstood disease. She spoke to SMF News’s Emma Solomon about the process of establishing Hope House Trust, a home providing comfort, support and independence to those suffering from schizophrenia.
After beginning with only 4 residents, today, Hope House has an extensive waiting list, says Jess Mackintosh, founder and chairperson of Hope House Trust. “We chose our residents carefully,” says Mackintosh. The selection committee comprises a psychiatrist, social worker and a trustee who interview prospective applicants, “to ensure that successful applicants will relate well with our residents and that the harmony in Hope House will not be disturbed”. PHOTO: Emma Solomon
“Twenty three years ago I had a dream, a dream for my daughter and others suffering from schizophrenia. That they could live in a house and enjoy the support and care they deserved, the independence they longed for and the warmth and love we all thrive on,” says Jess Mackintosh.
It is hard for one to describe the sadness and feeling of loss when finding out your own child suffers from a disease that makes them incapable of caring for themselves, says Mackintosh. But this is what Mackintosh had to face in 1994 when her youngest daughter was diagnosed with schizophrenia a year after graduating as a physiotherapist.
“Her story is sadly typical,” says Mackintosh. At the time she was diagnosed with schizophrenia Lindsay was a bright, attractive, high achiever – both academically and on the sports field, says Mackintosh about her daughter.
Girls typically get ill later than boys, at around 18 whereas boys it’s closer to 16, says Mackintosh. Lindsay was 23 when she received her schizophrenia diagnosis after two years of battling with the disease. It was exceptional for Lindsay to graduate. “Usually people with schizophrenia are very clever, but will go to university and then they get ill and they don’t graduate,” says Mackintosh.
Schizophrenia is “a cruel, dreadful disease,” says Mackintosh. The illness is confusing for both patients and family members, often leaving them pushed to the limits and struggling with where to turn. Lindsay was in and out of Valkenberg psychiatric hospital for six years after she first became ill. “At that stage she was in the lock up ward which was quite scary,” says Mackintosh. While Valkenberg offered Lindsay and her family some form of support and treatment, “she was becoming more and more ill really,” says Mackintosh.
“I will not be around to take care of her forever and I needed to know that there was a safe, structured, and caring environment for [Lindsay] to live in,” says Mackintosh. So with the strength of a loving and determined mother, Mackintosh set out to create that home for her child.
Building understanding
“Most people don’t know much about mental illness, especially back then,” states Mackintosh. While awareness around mental health and mental illnesses has improved over the years, unless you have a family member suffering from schizophrenia, “how much do you really know?”, says Mackintosh.
“When Lindsay got ill, I got notes about schizophrenia from the hospital and I gave a lot of my friends those notes so they understood what the illness was,” says Mackintosh. When patients get diagnosed, unless they are surrounded by friends who understand the disease or have some medical knowledge, the disease can appear quite frightening, she states. The lives of those around you go on “they become lawyers or accountants or whatever and they forget about their friend who has a mental illness.”
In 2000, Mackintosh met with a group of supportive friends, and together they decided they wanted to start a house. “I wanted a safe and secure home for [Lindsay], but there was no facility in Cape Town at that time which provided the type of accommodation I needed for my child,” she says.
So Mackintosh met with a group of supportive friends and began the process of creating that home herself. “We fundraised and fundraised and fundraised, and started shopping around before we found a house,” states Mackintosh.
In October 2000 Mackintosh purchased a house in Pinelands, Cape Town that would become Hope House Trust. “When I opened Hope House I was very naive and excited,” says Mackintosh. However, “I got a letter from some of the Pinelands residents and the council to say they were very ‘anti’ having a house for mentally ill people in Pinelands.” Mackintosh then held a meeting where she shared the stories of those suffering from schizophrenia, what schizophrenia is and that the house would not be disruptive in the neighbourhood. The councillor attended and “he said ‘Mrs Mackintosh has ticked all the boxes that need to be ticked and we have no right to ask her to leave’,” states Mackintosh.
Thus, in 2002 Hope House Trust opened its doors, first to Lindsay and three other residents. “And then word got out and now we’ve got a long waiting list,” says Mackintosh. “There are many, many mentally ill people who cannot find accommodation, especially accommodation that we offer with 24 hour care.”
Hope House Trust has provided a home for its eight residents, all suffering from schizophrenia, since it opened its doors in 2002. “The residents are like a family,” says Merriam Mgodeni, assistant house mother at Hope House (Right). “I’ve been here over 20 years, ” says Becky Thornton (Left), a long term resident at the Pinelands house. PHOTO: Emma Solomon
Building a home
“Hope House is not an institution, it is truly a home,” says Mackintosh, in a letter to the house’s donors reflecting on the last two decades. Loneliness and misunderstanding are common among people with mental illness, what Hope House offers is a place of comfort, support and independence for its eight residents.
“In Hope House having schizophrenia is like having diabetes, there is no stigma attached to it which is important,” says Mackintosh. The residents provide a lot of support for one another, “if Lindsay hears voices she can say ‘oh the voices are terrible’ and one of her friends will say ‘let’s go watch TV or listen to music’ or offer a simple ‘I know it’s horrible’.”
“The girls are like sisters and the boys are like younger brothers,” says Lindsay.
The residents have each other which offers a huge amount of support, but the 24 hour care provided by the house mothers is an essential part of what Hope House has to offer, says Mackintosh. “At the moment we have three new residents, and they are still really psychotic and need the 24 -hour care.”
“When it comes to having that family bond [the residents] help each other a lot but when it comes to medication they need me here,” says Merriam Mgodeni, assistant house mother at Hope House. Hope House has a house mother who is at the house from Monday to Friday, and to prevent burnout there are three assistant house mothers on rotation. “I’m here to look after them so no matter what the situation is I must try to understand them, they need someone there for them like that,” says Mgodeni.
An important part of the care that Hope House provides is keeping our residents busy, says Mackintosh. The house has its own occupational therapist (OT), and two voluntary aerobics teachers. “In OT we do art, poetry, beading, mind games, photography, singing, meditation and I also do some sewing,” says Lindsay.
“When I go to Hope House I go wearing the chairperson’s cap, and then I obviously have time for [Lindsay] as a mum,” says Jess Mackintosh, founder of Hope House Trust. Mackintosh set out to establish Hope House in 2000 in an effort to find a “safe, structured, and caring environment for [her daughter] to live in,” after she was diagnosed with schizophrenia. (Pictured left to right: Lindsay Mackintosh and Jess Mackintosh). PHOTO: Emma Solomon
Building the dream
“I obviously wanted a place for Lindsay, and she wanted to be independent herself,” says Mackintosh. Fundraising and the assistance of family and friends have ensured that Hope House has not only been debt free since its first year but that the property has been maintained and improved since the trusts’ establishment, she says.
Over the last decade Hope House has expanded. An extra bedroom wing has been added to the property as well as an exercise room where the various skills therapists and volunteers can conduct activities, says Mackintosh.
Yet, the most precious thing that Hope House has provided is a place where residents can get the support, understanding and care they deserve, “the dream came true,” says Mackintosh. “I’m very grateful for my mum and [for] Hope House,” says Lindsay, who has now been a resident at Hope House for over 20 years.