To all readers -
Welcome to Our Agenda blog. This is my first experience writing a blog and I'm grateful for the opportunity to share ideas, resources and to build (hopefully) an even larger community of people who care about the experiences of daughters and sons who have a parent with a mental illness. I've been organizing on this topic for the past eight years. Along the way many people with shared experience and passion have contributed literature, ideas, energy as organizers, development talent for support groups and much more. Collectively we created a document that outlines our core agenda. I will post that as my next entry. In the meantime...
Who are the Daughters and Sons?
We are a group of Daughters and Sons of parents with mental illness and/or psychiatric disability who have build a national working group, beginning in 2003. We work in partnership with researchers, parents with mental illness and other stakeholders and in tandem with efforts in Australia, the UK and Canada. Our focus is to enhance existing mental health providers and advocacy organizations with resources and information to ensure that parents with mental illness and their daughters and sons of all ages receive supportive and accurate information, a voice in treatment planning and respect from health care providers.
- Maggie Jarry
Hi Maggie,
ReplyDeleteI hope your presentation went well.
Here in NYS there is proposed legislation to "prevent non-therapeutic use of antipsychotic medication in nursing homes." The Legislative intent is from an FRIA -- Friends & relatives of the Institualized Aged. They've been around since the 70s and have Long Term Care Community Coalition. www.fria.org
Their document is important to us as advocates and caregivers for parents because it will require, "a physician would have to inform the family or designated representative (with patient's consent) of new medication within 48 hours."
I have worked with Daughter & Son caregivers for 8 years. There have been issues to navigate where nursing home medication changes have been life threatening. They can be as simple as an over-the-counter decongestant given to a resident who is allergic or whose history included manic episode precipitanted by non-sedating decongestants. The problems can be much more complex when the nursing home staff is not trained in psychiatric care and changes medications without investigating why they were prescribed and by whom.
We the caregiver-family member have the most detailed information about the resident. We need to be full partners in the care of our parents. We are always called in to clean up or even manage a crisis. Please call us regularly and make us partners in your work.
I urge everyone reading to support this legislation and others like it that strengthen the role of families and assist the prevention of medical mis-management. Remember the health care workers are also under stress often by remote corporate owners whose goal to make a profit. Caregivers stress and health is also at risk. We all need to work together to ensure health, dignity, and compassion for each other.
Regards,
Stasia
Well said, Stasia!!!!
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteKids pay a high price for their invisibility
ReplyDeleteChildren of parents who experience a mental illness have been invisible to service providers. It can be very confusing for a child who grows up in a household where things may be not quite right.
Some children may feel guilty, over burdened, or isolated. Children may be trying to come to terms with feeling ashamed because of poor community understanding about mental illness. Children may need to deal with grief and loss, with their own lost potential or the loss of the relationship with a parent. For many children, a mentally ill parent is an absent parent.
Issues commonly identified, include lack of trust, relationship difficulties, high carer stress, and the development of patterns of avoidance or over involvement with family members.
COMIC (Children of Mentally Ill Consumers/parents) developed a Supporting Our Family Kit which was officially launched at the Botanical Gardens in Adelaide South Australia on Wednesday 10 July 2002. This excellent Kit is available for download from the COMIC web site at: www.howstat.com/comic
An updated version of the Kit was published in 2008 and is also available on the COMIC website.
Due to the huge growth of COMIC the management was officially handed over to the COMIC Australia Foundation Inc. on 31 December 2008.
The aim of the Kit is to heighten awareness for children’s issues and to de-stigmatise mental illness within the community. COMIC encourage parents to ask for help and discuss their illness with their children.
When childhood issues are not dealt with they are often carried into adulthood where they potentially impact on relationship development and the ability to find peace and satisfaction as an adult.
COMIC aim was to start the healing process because no-one can heal in isolation.
Yours in caring
Nerrelle Goad and Paola Mason
Cofounders
COMIC (18 February 2000 to 31 December 20008)
I am so excited! I have just taught myself how to Blog and posted my first comment.
ReplyDeleteCongrats Nerrelle! Great to see your comments and additions here. Please keep them coming!
ReplyDeleteThanks Maggie, I can see so much potential for this site
ReplyDeleteIntroducing Nerrelle Goad
ReplyDeleteNerrelle is a Co-founder of COMIC (Children Of Mentally Ill Consumers/parents). Since 1993 Nerrelle has contributed to raising community awareness of the needs of children of mentally ill consumers and founder of the Offspring support group for young people in South Australia. Since February 2000 when COMIC was launched Nerrelle has been involved in research and administration.
Currently a Carer Representative for the Mental Health Council of Australia National Register, a member of the Flinders Medical Centre Mental Health Consumer and Carer Advisory Group and the Mental Illness Fellowship of South Australia Education Program. Nerrelle has a special interest in Adult Children and in particular the children of War Veterans.
Nerrelle has attended and presented at many Conferences throughout Australia and has established a wide network including people from overseas. Nerrelle continues to advocate for systems to be put in place for the “invisible children”, through inter-agency collaboration, with a focus on the Family approach, (Consumers, their Children, Carers and Community).
The management of COMIC was officially handed over to the COMIC Australia Foundation Inc. on 31 December 2008. ACTION (Adult Children Taking Implementation On Now) was launched on 18 February 2010, exactly 10 years after COMIC commenced. This year has been spent planning aims, goals, objectives and building the infrastructure for a social network for Adult Sons and Daughters of parents living/lived with a mental illness.
Kindest regards ........... Nerrelle
Advocate
ACTION (Adult Children Taking Implementation On Now)
ADELAIDE SOUTH AUSTRALIA AUSTRALIA
http://adultchildren.ning.com