Grandparent~
relative caregivers.
relative caregivers.
Latest Edition of Finding Your Way: A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities Available English and Spanish
An English-language version is available at https://ucedd.waisman.wisc.edu/fyw/
pdf version of the guide is available at https://go.wisc.edu/finding-your-way.pdf
A Spanish-language .pdf versions: https://ucedd.waisman.wisc.edu/encuentre-su-camino/
A printed versions are available at minimal cost.
Special Health Care Needs and Disabilities is designed to help families and professionals navigate the system of care in Wisconsin.
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Coalition for Children, Youth and Families has a team of Resource Specialists to support you and your family every step of the way. If you have additional questions or need more information, please reach out.
Coalition for Children, Youth & Families | info@coalitionforcyf.org
414-475-1246 | coalitionforcyf.org
Kinship Navigator Portal (http://dcf.wi.gov/kinship/navigator) can be used by any relative caregiver throughout the state to identify services and resources available to them based on their specific caregiving situation. Caregivers will be asked to answer a set of questions specific to their situation, and based on those answers, they will be provided with an array of information about their eligibility for various programs.
Family caregivers please check out this is a new free online educational tool for family caregivers across Wisconsin. Learn about health issues, care techniques, and managing care for loved ones during flu season. http://WisconsinCaregiver.org/virtual-events-for-caregivers
`Virtual -Support Groups, Memory Cafes, Events, and Powerful Tools for Caregivers classes
Let’s Get Away, Together: Winter Series explore a new world, experience a variety of engaging opportunities,
and enjoy a sense of camaraderie and community.
Interactive travel and culture activity sessions
Incorporating storytelling, music, poetry writing, and/or a simple craft.
Dementia 101- increase your knowledge of dementia
Ask A Dementia Care Specialist
Caregiver Rest and Restore –
Boost Your Brain and Memory
Online Book Club
Ask A Dementia Care Specialist
The Caregiver Experience: Tools to Assist in the Journey
Caregiver Teleconnection Program
Wisconsin Adoption & Permanency Support for Grandparents and Relative Caregivers.
Caregiver Coffee Hour
Northeast WI Telephone Support Group
Caregiver Support Group
Family Caregivers for a Loved One with Dementia in the Early Stages
Caregiver Friends Support Group
Let's Talk Over Coffee
Alzheimer's/Dementia Caregiver Support Group
Caregiver Support Group
Family Caregivers for a Loved One with Dementia in the Early Stages
Dependable Friends Virtual Support Group
For Persons Living with Mild Cognitive Impairment (MCI)
Male Caregiver Support Group
Family Caregivers for a Loved One with Frontotemporal Degeneration (FTD)
Family Caregivers for a Loved One with Dementia Living at a Facility
Wacky Wednesday for Fun and Socialization
Knowledge is Power Hour - Educational Programming
Webinar Wednesdays- re: respite care in Wisconsin. https://www.respitecarewi.org
Outagamie Caregiver Coalition Chats
Virtual Pizza & Trivia
MEMORY CAFES(Memory Cafes provide a way for persons with memory loss and their care partner to socialize with other people going through similar journeys.)
POWERFUL TOOLS FOR CAREGIVING VIRTUAL CLASSES
Check the Wisconsin Institute for Healthy Aging website for other classes in your area.
https://wihealthaging.org/workshops
Support Groups
Grandparents & Other Relatives as Parents (GORP) –
Community outreach: quarterly newsletter, warmline (not crisis line but more about finding resources) and community presentations on topics that resonate with relative caregivers.
GORP meets 2nd Saturday from 10 to noon.
Childcare and food is provided – 2 childcare workers – 1 is clinical therapist and other is volunteer.
They offer a presenter quarterly and clinical-type support the other months. Also hosts annual events (caregiver appreciation month and potluck celebration). The respond to what is going on with members to meet their specific needs – i.e. lots dealing with trauma – offered presentation on play; substance abuse – setting boundaries, etc. For more information, contact Serena at referrals@therainbowproject.net or (608) 255-7356.
Resource webinars that maybe helpful, supportive and informational!
https://www.championclassrooms.org/?utm_source=email&utm_medium=email&utm_campaign=Coalition%20Connection
Archived Webinars include:
Lying as Trauma-Driven Behavior
Navigating the Holidays
School Challenges
Relative Caregiving: Navigating the Change in Roles
Anger Management for Children and
Parents
Strategies for Building Stronger
Relationships with Teens
Strategies for Challenging Behaviors
Greif and Loss in Foster Care and Adoption
The Anxiety Monster
The Journey of Forgiveness
Tips for Positive Parenting
Preparing children for Transition
Introduction to Relative Care
Tips sheets: https://wifostercareandadoption.org/library-assets/?fwp_library_asset_type=tip-shee
Include:
Youth Tip Sheet (19)
Foster Care (18)
Adoption (8)
Kinship (4)
Siblings (4)
Trauma (4)
Grief (3)
Mental Health Therapy (3)
Post-Adoption Services (3)
Special needs (3)
Caregiving versus parenting:
https://centerforfamilyinvolvementblog.org/2019/11/22/caregiving-and-parenting-are-not-the-same/
Print and share with your school or circle of family and friends!.
From the Center For Family Involvement
CAREGIVING AND PARENTING ARE NOT THE SAME
Stories and information for families and individuals in the disability community
What exactly is a caregiver?
We assume that parent/caregiver is interchangeable. One of the same. It’s not.
A caregiver, by definition, is a family member or paid helper who REGULARLY looks after a child or a person who is sick, elderly, or disabled. All parents serve as a caregiver from time to time. But that is not the same as the “primary caregiver” role so many of us took on the moment we became a mom or dad.
Why does this matter?
Acknowledging how different and challenging the parent/caregiver role is important because it can consume us without us realizing it. We love our children so deeply that the lengths we go to ensure their comfort become our new normal. But our norm is not the norm. That’s why recognizing and honoring caregivers is so important. We love our children unconditionally and will do anything for them, part of that needs to be loving ourselves too.
How is parenting different from caregiving?
Parents need babysitters.
Caregivers need respite.
Parents take their kids to well visits and sick visits a couple times a year.
Caregivers administer treatments and carry binders full of medical records to quarterly,
monthly, sometimes weekly appointments.
Parents listen to doctors.
Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions.
Caregivers are often the most important part of the medical team.
Parents make dinner.
Caregivers feed their children, by mouth, by tube, whatever is needed.
Parents tell their kids to do their homework while they prep dinner.
Caregivers spend an hour helping a child do what should be 10 minutes of homework, which
they’ve also helped modify. Dinner is a daily crapshoot.
Parents go to parent teacher conferences.
Caregivers go to those conferences and also IEP meetings, behavior plan meetings, care plan
meetings, person-centered planning meetings, Medicaid eligibility meetings. So many
meetings.
Parents take their kids to soccer practice and drink coffee on the sidelines.
Caregivers search for a sport or program that is suitable, fill out piles of paperwork, meet
with the people running the program, go over accommodations needed, and are on high
alert monitoring their loved one, often jumping in to help.
Parents sign their kids up for after school clubs.
Caregivers contact clubs to see if supports
are available. They usually aren’t. So they request assistance, offer to help change the
system, or offer support themselves. Caregivers sometimes give up or don’t bother asking,
because it’s not worth the effort.
Parenting is planning a family vacation to somewhere fun.
Caregiving is wondering how you can make endless visits to specialists feel like a vacation
because you have no money or leave left for anything else. Caregiving is forgetting that
dream vacation and finding something that is doable because of medical conditions that
make travel difficult.
Parents park in the most convenient space available for their family’s needs.
Caregivers arrive to events early hoping to secure a disabled parking spot. Those spots are
often taken by parents who don’t need them but thought “5 minutes don’t matter.” So
caregivers navigate dangerous parking lots pushing a wheelchair or monitoring a child
who collapses and runs off with no safety awareness of cars.
Parents are sleep deprived for the first few months and years of their child’s life.
Caregivers are sleep deprived indefinitely.
Parents carry a diaper bag and later some extra clothes and eventually just their own stuff
again.
Caregivers bags only get bigger in every sense. Bigger diapers, bigger clothes. And the
emotional baggage we carry but keep buried down below gets heavier, as we see our l
loved one’s peers pass them by. As the “little kid cute” fades, stares become less kind
and more prominent. It stings. But we barely have time to process it because we must
keep on caregiving.
Parents’ roles change when their children become adults. They will always be a parent, but
their “work” is done.
Caregivers will always be caregivers. And their role becomes more complicated as time goes on.
How do we care for a caregiver?
Acknowledge it is hard.
We internalize so much because we love our children.
There is no shame in saying it can be hard.
There is a reason we’re always tired.
Lean on each other for support.
Validation is everything.
Knowing you’re not alone in your feelings makes a big difference.
Advocate for change.
Supports are available but not accessible for so many of us.
Wages for hired caregivers are so low that it’s difficult to find and retain quality respite providers.
There are people pushing for change. Find them and join the movement. It can be as simple as following a group on social media and sending an email when issues arise.
Be kind.
To your family.
To yourself.
When everything feels like too much, toss out those arbitrary rules we make.
Turn on a screen.
Order in.
Ask for help.
Step outside and breath for a moment.
Always remember – you are not alone.
https://www.championclassrooms.org/?utm_source=email&utm_medium=email&utm_campaign=Coalition%20Connection
Archived Webinars include:
Lying as Trauma-Driven Behavior
Navigating the Holidays
School Challenges
Relative Caregiving: Navigating the Change in Roles
Anger Management for Children and
Parents
Strategies for Building Stronger
Relationships with Teens
Strategies for Challenging Behaviors
Greif and Loss in Foster Care and Adoption
The Anxiety Monster
The Journey of Forgiveness
Tips for Positive Parenting
Preparing children for Transition
Introduction to Relative Care
Tips sheets: https://wifostercareandadoption.org/library-assets/?fwp_library_asset_type=tip-shee
Include:
Youth Tip Sheet (19)
Foster Care (18)
Adoption (8)
Kinship (4)
Siblings (4)
Trauma (4)
Grief (3)
Mental Health Therapy (3)
Post-Adoption Services (3)
Special needs (3)
Caregiving versus parenting:
https://centerforfamilyinvolvementblog.org/2019/11/22/caregiving-and-parenting-are-not-the-same/
Print and share with your school or circle of family and friends!.
From the Center For Family Involvement
CAREGIVING AND PARENTING ARE NOT THE SAME
Stories and information for families and individuals in the disability community
What exactly is a caregiver?
We assume that parent/caregiver is interchangeable. One of the same. It’s not.
A caregiver, by definition, is a family member or paid helper who REGULARLY looks after a child or a person who is sick, elderly, or disabled. All parents serve as a caregiver from time to time. But that is not the same as the “primary caregiver” role so many of us took on the moment we became a mom or dad.
Why does this matter?
Acknowledging how different and challenging the parent/caregiver role is important because it can consume us without us realizing it. We love our children so deeply that the lengths we go to ensure their comfort become our new normal. But our norm is not the norm. That’s why recognizing and honoring caregivers is so important. We love our children unconditionally and will do anything for them, part of that needs to be loving ourselves too.
How is parenting different from caregiving?
Parents need babysitters.
Caregivers need respite.
Parents take their kids to well visits and sick visits a couple times a year.
Caregivers administer treatments and carry binders full of medical records to quarterly,
monthly, sometimes weekly appointments.
Parents listen to doctors.
Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions.
Caregivers are often the most important part of the medical team.
Parents make dinner.
Caregivers feed their children, by mouth, by tube, whatever is needed.
Parents tell their kids to do their homework while they prep dinner.
Caregivers spend an hour helping a child do what should be 10 minutes of homework, which
they’ve also helped modify. Dinner is a daily crapshoot.
Parents go to parent teacher conferences.
Caregivers go to those conferences and also IEP meetings, behavior plan meetings, care plan
meetings, person-centered planning meetings, Medicaid eligibility meetings. So many
meetings.
Parents take their kids to soccer practice and drink coffee on the sidelines.
Caregivers search for a sport or program that is suitable, fill out piles of paperwork, meet
with the people running the program, go over accommodations needed, and are on high
alert monitoring their loved one, often jumping in to help.
Parents sign their kids up for after school clubs.
Caregivers contact clubs to see if supports
are available. They usually aren’t. So they request assistance, offer to help change the
system, or offer support themselves. Caregivers sometimes give up or don’t bother asking,
because it’s not worth the effort.
Parenting is planning a family vacation to somewhere fun.
Caregiving is wondering how you can make endless visits to specialists feel like a vacation
because you have no money or leave left for anything else. Caregiving is forgetting that
dream vacation and finding something that is doable because of medical conditions that
make travel difficult.
Parents park in the most convenient space available for their family’s needs.
Caregivers arrive to events early hoping to secure a disabled parking spot. Those spots are
often taken by parents who don’t need them but thought “5 minutes don’t matter.” So
caregivers navigate dangerous parking lots pushing a wheelchair or monitoring a child
who collapses and runs off with no safety awareness of cars.
Parents are sleep deprived for the first few months and years of their child’s life.
Caregivers are sleep deprived indefinitely.
Parents carry a diaper bag and later some extra clothes and eventually just their own stuff
again.
Caregivers bags only get bigger in every sense. Bigger diapers, bigger clothes. And the
emotional baggage we carry but keep buried down below gets heavier, as we see our l
loved one’s peers pass them by. As the “little kid cute” fades, stares become less kind
and more prominent. It stings. But we barely have time to process it because we must
keep on caregiving.
Parents’ roles change when their children become adults. They will always be a parent, but
their “work” is done.
Caregivers will always be caregivers. And their role becomes more complicated as time goes on.
How do we care for a caregiver?
Acknowledge it is hard.
We internalize so much because we love our children.
There is no shame in saying it can be hard.
There is a reason we’re always tired.
Lean on each other for support.
Validation is everything.
Knowing you’re not alone in your feelings makes a big difference.
Advocate for change.
Supports are available but not accessible for so many of us.
Wages for hired caregivers are so low that it’s difficult to find and retain quality respite providers.
There are people pushing for change. Find them and join the movement. It can be as simple as following a group on social media and sending an email when issues arise.
Be kind.
To your family.
To yourself.
When everything feels like too much, toss out those arbitrary rules we make.
Turn on a screen.
Order in.
Ask for help.
Step outside and breath for a moment.
Always remember – you are not alone.