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Respite And Self-Care for Caregivers

Caregiver_RespiteRespite services are essential for the caregivers of individuals with a serious mental illness.  When a caregiver doesn’t or can’t take a break and recharge, tend to their own essential needs, or have any life of their own, they put their own health and well-being at risk.  This then puts the quality or continuance of their caregiving at serious risk.  Every caregiver needs respite, but getting respite is often difficult.

Respite services are expensive, rarely covered by insurance, quite limited under government programs, or are unavailable for those with serious mental illnesses. Often the individual with the illness is too ill to be left alone for any significant time, too ill for any outpatient or partial hospitalization program, yet not ill enough to qualify for inpatient services.  This page offers what resources we know of to help caregivers of individuals with serious mental illnesses.

We are actively looking for helpful links and tips about respite programs and other self-care options to be added to this page.  If you have and suggestions please contact namiglendalewebmaster@gmail.com .

Picture of green leaves and a flower with the caption, "Respite is not a luxury. It is a vital necessity. "

Free Respite  And Assistance:

Los Angeles County Department Of Mental Health (DMH):

DMH has limited specialized respite programs for parents of underage (below 18) children.  These are generally restricted to families where the child is already receiving services and are meant to help keep the child in the home as opposed to institutionalization. http://dmh.lacounty.gov/wps/portal/dmh/our_services/services_detail/?current=true&urile=wcm:path:/DMH+Content/DMH+Site/Home/Our+Services/Our+Services+Detail/Consumer+and+Family+Affairs

Los Angeles County Regional Center:

Provides respite for qualifying families of clients with developmental disabilities such as autism 15400 Sherman Way #170, Van Nuys, CA 91406, (818) 778-1900 www.nlacrc.org

Area Agency on Aging, Family Caregiver Support Program:

FAMILY CAREGIVER: An adult (age 18 or older) family member or another individual who provides unpaid care to an older individual (age 60 or older) or to an individual of any age with Alzheimer’s disease or a related disorder with neurological and organic brain dysfunction. [This definition may be used to preclude someone who only presents with a mental illness].

GRANDPARENT OR OLDER INDIVIDUAL WHO IS A RELATIVE CAREGIVER: A grandparent, step-grandparent, or other relative (age 55 or older) who cares for a child related by blood, marriage, or adoption. This caregiver must be living with the child and identified as the primary caregiver through a legal or informal arrangement. [This would seem to apply to senior caregivers of any minor child including one with impairments due to mental illnesses.]

For services, call (800) 510-2020 or see this website http://css.lacounty.gov/programs/area-agency-on-aging/ 

Medicare:

Provides some in home health services that may partially reduce your burden but are designed as health care for the patient but not respite for you.

https://www.medicare.gov/coverage/home-health-services.html

The In-Home Supportive Services (IHSS) Program:

Not designed as respite program, these services may partially ease your burden by providing necessary service to your loved one.

LA County: https://dpss.lacounty.gov/dpss/ihss/

For all other counties see: http://www.cdss.ca.gov/agedblinddisabled/pg1785.htm

IHSS helps pay for services provided to low-income elderly, blind or disabled individuals, including children, so that they can remain safely in their own home. IHSS is considered an alternative to out-of-home care, such as nursing homes or board and care facilities.

Some of the services that can be authorized through IHSS include: housecleaning, meal preparation, laundry, grocery shopping, personal care services (such as bowel and bladder care, bathing, grooming and paramedical services), accompaniment to medical appointments, and protective supervision for the mentally impaired.

Low Cost Respite:

http://www.calrespitecare.com/

https://www.care.com/

 

Self-Care and Caregiver Supportselfcare

The best self-care would be respite services, which in California seem to be available to some few parents of underage children and to caregivers for some seniors.  This includes: parents/guardians of children with developmental disabilities such as autism via the regional centers;  DMH has some limited local programs for parents/guardians of underage children who are otherwise “in-system;” additionally Area Agency on Aging has respite for senior parents/guardians; and Area Agency has respite for adult caregivers of seniors with specific neurological or organic brain disorders.
It is very difficult for most caregivers to get respite help from other family members for numerous reasons. Some literally can’t take on that role; some don’t get the need to step up and help; others just refuse; well-meaning folks, who seem to get it and offer to help, flake out repeatedly, or put onerous limits on the help they’ll give; and so forth.

It would be great if respite services became more on the radar for Advocates and lawmakers to devise some solutions, so the onus of care is not entirely on the families.

All that said, whatever you can do for yourself is important.  This helps you charge your batteries and makes you more effective and efficient as a caregiver.

In group support settings the group should regularly have participants share what they do for their own respite and help those who don’t yet engage in self-care, or feel they can’t, brainstorm on this issue. People are often so wrapped up in their caregiving that they cannot allow themselves to take the little moments of self-care available or even recognize these moments when they exist. Sometimes it’s as little as locking yourself in the bathroom or a bedroom for a few minutes with a good book.

Getting permission to engage in self-care from other people in the same boat as you can be hugely liberating. It’s not uncommon for caregivers to see any self-care as a betrayal of their loved one, which means they don’t do anything for themselves, or feel guilty as hell whenever they sneak some self-time in.

It is extremely easy for primary caregivers to develop a co-dependant relationship with their loved one.  One book that may be useful to help with this issue is Codependent No More, by Melody Beattie.  If part of the co dependent problem is getting your loved one to accept you taking some time for yourself, this book may help you to talk to them: I’m Not Sick, I Don’t Need Help, by Xavier Amador.

This problem won’t ever go away entirely because caregivers will always be needed and caregivers will always need respite, but please advocate for expanded respite services with your local, state, and national government and charitable entities.

Caregiver Support Links

NAMI Family Support Groups http://namiglendale.org/support-groups/
is our number one recommendation for local caregivers, family members, and loved ones of someone with a mental illness living or working in Greater Glendale. Share with others who get it because they live it, tap into the experience and wisdom of the group, find out about local resources, learn from the experiences of others, give your support to others who are also struggling to deal with the impact of loving and relating to someone with a mental illness.  For NAMI Family Support Groups in other areas go to https://www.nami.org/Find-Support/NAMI-Programs/NAMI-Family-Support-Group .

MyHealios https://www.myhealios.com/
is an evidence-based, remotely available, caregiver support service. Caregivers need support and proper training in order to efficiently help the patient on their path to recovery. However, access to support or training services is very limited with options varying between free local support groups and/or costly sessions with a therapist. MyHealios’ provides a high-quality professionally-designed-psychoeducation and skill training program at an affordable price. We provide this service through a forward thinking approach incorporating innovative technology, evidence-based clinical interventions delivered by highly experienced clinicians.

ARCH National Respite Network and Resource Center  http://archrespite.org/
Caregivers can find respite information at ARCH National Respite Network and Resource Center and its National Respite Locator Service. Make connections with your state’s Lifespan Respite Program or State Respite Coalition.

Parents for Care http://www.parentsforcare.com/
is a support organization for caregivers of persons with mental illness.  As care givers, we must perform in a thousand roles to assist our children, brothers and sisters, or parents, with serious mental illness–navigating a system with no road map for illnesses that shut us out of assisting. We are here to offer an ear and perhaps some practical advice if requested. We know the isolation a care giver faces, when the person being cared for is mentally ill. It makes your life unpredictable, and it can make socializing nearly impossible. We’re here to offer friendships with other parents in similar situations.

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