Perhaps your young adult child has been in and out of hospital many times and the years are starting to sneak up on you. You might be wondering how your child is ever going to live in the community without you. That is what our family is facing.
by Sheila Morrison
In sixteen years we have been through acute care, rehabilitation units, the Beacon Unit in Waterville, two small option homes, and a bachelor apartment without the promised support team.
Today we face discharge yet again to an unknown place. But, we see this as an opportunity. We make sure we are included in team meetings regarding her care. It is our job to represent our daughter’s point of view as well as our own. We are the only ones who truly understand the culture in which she has grown up and what she values most. We have known her the longest.
It is also our job to come to these meetings well prepared. We talk to our daughter and we talk to each other. We repeat what we hear each other saying so we are sure we understand each other. We make lists of her accomplishments, her goals, her fears and our concerns. We show her our notes. We present them at the team meeting with copies for everyone. Sometimes we ask for a trained facilitator if we feel there will be differing opinions. . Occasionally she chooses to attend part of a meeting.
We research what the possibilities in the community might be and we do not make decisions quickly. We always have to compromise and we have to teach her to do the same. We know that we have to live with our decisions and are prepared to say “this isn’t working; can we talk again?”
This month we are close to an apartment with support in place. It’s not going to be easy but she has to have the opportunity to live as independently as she can. Whether she is likely to succeed or fail is not the question. Rather, have we team members (parents and daughter included) all done our best to maximize her chance of success in doing what she wants to do.
If you want a voice:
- Get to know the names of staff – write them down, address them by name.
- When your family member is admitted to hospital, ask for a meeting with the team to discuss the treatment plan within no more than two weeks of admission.
- If you find this difficult or intimidating ask for a facilitator to be present or bring a trusted person with you.
- Come prepared to explain to what degree you want to be involved. Bring questions. Come with an attitude of team building, not complaining. Express your fears but say you appreciate their help and you want to contribute where you can.
- Ask what supports are available for you (a nurse, a chaplain, a group, reading materials etc)
- Say you would like to have meetings whenever there are major changes in treatment plans coming up.
- Thank people who do their job well.
Note: There are many different ways to approach getting support in the community. The Supportive Community Outreach Team (SCOT) visits clients in their homes and helps with medication, transportation, shopping, whatever is needed.
Intensive Case Management workers provide similar services. Both teams are with the Department of Health and work to help their clients develop their skills in the community.
The Department of Community Services also provides support to people with disabilities in various types of settings. Clubhouses, such as Connections Clubhouse (supported by Capital Health), also help with housing, employment and skill development. You can find some information on these in Living With Mental Illness: A Guide for Family and Friends. To request a copy: community@cdha.nshealth.ca or call (902) 454-1410. A social worker would also be able to help answer questions about which service is most appropriate and how to access them.
About Sheila Morrison.
Sheila is an accomplished freelance/creative writer, community volunteer, and public speaker. She lives in Halifax, Nova Scotia. The mother of an adult daughter who lives with mental illness, Sheila is a passionate advocate for mental health initiatives which respect and support
individuals and families. Sheila calls her daughter her hero.
Perhaps your young adult child has been in and out of hospital many times and the years are starting to sneak up on you. You might be wondering how your child is ever going to live in the community without you. That is what our family is facing.
by Sheila Morrison
In sixteen years we have been through acute care, rehabilitation units, the Beacon Unit in Waterville, two small option homes, and a bachelor apartment without the promised support team.
Today we face discharge yet again to an unknown place. But, we see this as an opportunity. We make sure we are included in team meetings regarding her care. It is our job to represent our daughter’s point of view as well as our own. We are the only ones who truly understand the culture in which she has grown up and what she values most. We have known her the longest.
It is also our job to come to these meetings well prepared. We talk to our daughter and we talk to each other. We repeat what we hear each other saying so we are sure we understand each other. We make lists of her accomplishments, her goals, her fears and our concerns. We show her our notes. We present them at the team meeting with copies for everyone. Sometimes we ask for a trained facilitator if we feel there will be differing opinions. . Occasionally she chooses to attend part of a meeting.
We research what the possibilities in the community might be and we do not make decisions quickly. We always have to compromise and we have to teach her to do the same. We know that we have to live with our decisions and are prepared to say “this isn’t working; can we talk again?”
This month we are close to an apartment with support in place. It’s not going to be easy but she has to have the opportunity to live as independently as she can. Whether she is likely to succeed or fail is not the question. Rather, have we team members (parents and daughter included) all done our best to maximize her chance of success in doing what she wants to do.
If you want a voice:
- Get to know the names of staff – write them down, address them by name.
- When your family member is admitted to hospital, ask for a meeting with the team to discuss the treatment plan within no more than two weeks of admission.
- If you find this difficult or intimidating ask for a facilitator to be present or bring a trusted person with you.
- Come prepared to explain to what degree you want to be involved. Bring questions. Come with an attitude of team building, not complaining. Express your fears but say you appreciate their help and you want to contribute where you can.
- Ask what supports are available for you (a nurse, a chaplain, a group, reading materials etc)
- Say you would like to have meetings whenever there are major changes in treatment plans coming up.
- Thank people who do their job well.
Note: There are many different ways to approach getting support in the community. The Supportive Community Outreach Team (SCOT) visits clients in their homes and helps with medication, transportation, shopping, whatever is needed.
Intensive Case Management workers provide similar services. Both teams are with the Department of Health and work to help their clients develop their skills in the community.
The Department of Community Services also provides support to people with disabilities in various types of settings. Clubhouses, such as Connections Clubhouse (supported by Capital Health), also help with housing, employment and skill development. You can find some information on these in Living With Mental Illness: A Guide for Family and Friends. To request a copy: community@cdha.nshealth.ca or call (902) 454-1410. A social worker would also be able to help answer questions about which service is most appropriate and how to access them.
About Sheila Morrison.
Sheila is an accomplished freelance/creative writer, community volunteer, and public speaker. She lives in Halifax, Nova Scotia. The mother of an adult daughter who lives with mental illness, Sheila is a passionate advocate for mental health initiatives which respect and support
individuals and families. Sheila calls her daughter her hero.