Support for the Supporter

Care partners are a vital source of support and assistance to those living with chronic illnesses like MS, and it’s important to realize that they need just as much care and support for themselves in order to maintain that role of care partner to others. Self-care often falls by the wayside as burnout and exhaustion from daily caregiving tasks overpowers all else; that is why calling out some of the crucial resources and services available to care partners is so important. In a previous post we talked about some of MSAA’s resources for care partners, so we thought it would help to expand on this to include some other types of community sources of assistance.

Offices of Aging and Disability Services:

These offices provide resources and services for caregivers that include respite care, homecare assistance and other community programs. Individuals can search by location for this office contact:

https://eldercare.acl.gov/Public/Index.aspx

Centers for Independent Living:

These centers offer information and referral services as well as some direct programs to those living with disabilities and are a good source of information to caregivers. To find one’s nearest location they can search by state/city/county here:

http://www.ilru.org/projects/cil-net/cil-center-and-association-directory

ARCH National Respite Network:

Resource providing a respite services locator, funding and caregiver support contacts, webinars and publications for caregiver needs:

https://archrespite.org/

Family Caregiver Alliance:

Organization that does policy and advocacy work for caregiver needs; they also offer caregiver education, online support groups and links to state by state resources:

https://www.caregiver.org/

Caregiver Action Network:

An organization providing education, peer support, and resources to family caregivers across the country:

http://caregiveraction.org/

Veterans Caregiver Support:

Support resources and tools are provided to those caring for veterans. Resources are also provided for specific conditions that include MS:

https://www.caregiver.va.gov/

https://www.caregiver.va.gov/Tips_by_Diagnosis/MS.asp

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Taking a Break

Sometimes we all just need a break from things. No matter what’s going on around you—whether it be in your relationships, work, family roles, etc. there are times when we need to take a step back and reflect on ourselves and our needs. Everyday challenges and obstacles can be difficult enough, but throw something like MS into the mix and the stressors can sometimes multiply. MS demands much from everyone it touches; unfortunately it makes no exceptions or allowances if there are other things already going on—it’s selfish that way. So there are times when those caring for individuals whom MS affects need some respite care-time to themselves.

The term respite means taking a break or relief period from something that may be somewhat stressful, difficult, or challenging. Those who provide caregiving to others may need periods of respite, even if it’s just for a brief time where they can step outside of their environment and do something else. This can be very important in relationships where a loved one provides care for another family member. Relationships themselves require a lot of maintenance most of the time and for them to continue working there are moments where those involved need space and time to themselves.

It’s an innate, human characteristic to feel the need to distance yourself from others sometimes. There are times when we all need to pause and catch our breath and examine our own needs, especially if we’re providing care to others around us. We need to be able to self-care in order to be depended on. There are different types of respite services and resources available, especially to care partners so that they can take time for themselves or other things and know that their loved ones are being cared for.

The following resources can help when searching for respite service information:

Family Caregiver Alliance
Phone (800) 445-8106 www.caregiver.org

Caregiver Action Network
Phone (202) 772-5050 www.caregiveraction.org

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Caring for You When You’re Caring for Someone with Multiple Sclerosis

Being a caregiver doesn’t always mean having time to take care of yourself, but at times it is exactly what’s needed in order to maintain your own wellbeing. Yes, it may not always fit into your schedule while taking care of others, but it requires some consideration so that you may carry out these other responsibilities. As a caregiver, self-care means having to make time during the busy day to do something for yourself. For some this is difficult to achieve or even fathom, because the person being cared for is your top priority. But, if possible, you may be able to make minor changes or tweaks to a routine that creates the time and space for this much needed self-care. Though caregiving can be unpredictable due to the changing nature of illness, it is important to take advantage of times where you can be taken care of too. Here are some suggestions to find these moments of self-care:

  • Take rests when they rest.
  • Eat regularly! Eating meals together can have an added quality time component too.
  • Venture outside of the home when you can. Running errands, going shopping, or even just taking a brief walk can provide some alone time needed to rejuvenate yourself (To search for respite resources in your area, see the ARCH National Respite Network and Resource Center, http://archrespite.org/home).
  • Talk! Caregiving can be an overwhelming and emotional journey, so if you have the opportunity to talk or vent about your experiences, do so. If you would like an objective third party to listen who’s not a family member or friend, it may be helpful talking to a counselor/therapist about your experiences in order to safely and effectively express your feelings in this role.

Caregiving is no easy task. It takes a lot of hard work, determination and commitment. So while you’re busy taking care of others, be sure to remember you, and that sometimes you need care too!

 

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