Online Support for Caregivers of People with Multiple Sclerosis

Posted on August 26, 2013 by MSAA

As a caregiver or care partner it can frequently be a challenge to actually make it out and about town. While an in-person support group or activity may be ideal, sometimes it may not be a reality. Online groups provide an alternate way to connect to support without having to plan details and coordinate care to be able to attend.

Websites such as MSWorld: http://www.msworld.org/ and PatientsLikeMe: http://www.patientslikeme.com/ provide avenues for individuals diagnosed with MS and their caregivers to discuss their concerns. These groups allow you to connect through online message boards or forums.

So, when you can’t get out of the house but need to talk with another person who has “been there” an online resource may be the way to go. Please note that every online forum will have its own set of rules and privacy policies. Before you register for any website be sure you are comfortable with the terms agreement.

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

Posted on August 19, 2013 by Angel Blair

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!

Resources for the Caregiver

Posted on August 14, 2013 by Samantha Schech

The role of the caregiver is often described as “the rock” or “the foundation” of the family; the one responsible for the wellbeing of all. But who takes care of you? Just as much as your loved one needs your support, you need support also. It is ok to take a break, and turn to help when you need it. In order to be the best caregiver you can be you need to be well rested both mentally and physically. Being the primary caregiver for an individual with MS can be challenging. The unpredictability of MS itself creates an additional challenge in trying to manage your day to day life.

There are some helpful resources for those in the caregiver role to aid in the management of the daily challenges of caregiving. The Family Caregiver Alliance provides caregiving information and advice as well as a guide to state resources available to caregivers. The Caregiver Action Network offers information and resources to individuals in all types of caregiving situations. The site helps to identify the various needs that caregivers may express through their varying roles.

Another great resource directed specifically towards spousal caregivers is the Wellspouse Association. They coordinate a national network of Support Groups and facilitate a Mentor program. And when the time comes for a break, the National Respite Network provides a National Respite Locator to help caregivers locate respite services in their community. The site also helps to educate caregivers on how to find and choose appropriate respite care.

With so many resources available to assist the individual in the caregiving role, now it is your time to take a break and be the best caregiver that you can be.

Caregiver Recognition

Posted on August 12, 2013 by MSAA

By Matt Cavallo

I remember the feeling to this day. You know that sinking feeling in the pit of your stomach when something is happening that is outside your control. I was lying in my hospital bed, my wife and family surrounding me looking hopelessly as I drifted in and out of consciousness. The entire time I was thinking, “What did they do to deserve this?”

Everyone was handling the news differently. My dad told me that he met some people with MS that were hiking mountains and playing tennis. My mom was at church everyday holding community prayer to find a cure for her son. I even had a friend tell me that drinking Pedialite would regenerate spinal fluid after the spinal puncture somehow.

Then there was my wife, Jocelyn, standing steadfast by my side. Friends and family came and left the hospital, but she stayed each minute. As I looked at her, I believed that the hopes and dreams we had for raising kids and enjoying the family life were dashed at twenty eight years old. I was wondering if I was even capable of having children with the Transverse Myelitis rendering me without function from the waist down.

Eight years later, Jocelyn is still by my side. Through each MS exacerbation, treatment and therapy she has been there always. At times, her role as my caregiver has been a challenge. When I had my cervical fusion, she had to help me with things like bathing and getting dressed. She was providing my care while taking care of a two year old toddler and a newborn.

There will always be challenges for those who care for a person with a chronic illness. There are also resources that can help. Even though Jocelyn and I have achieved a pretty normal life despite living with MS, we are always looking for information to ensure this quality of life continues. A great resource for care givers is the Spring 2004 Motivator article, Caring. Caring provides helpful tips and resources such as safety, diet and stress for those caring for a person living with a chronic illness like Multiple Sclerosis.

Last week, my wife celebrated her birthday and each year I am more and more amazed with her. All my fears back in that hospital bed have disappeared because I know that she is there for me. We were able to accomplish all our hopes and dreams and today are living the family life we always wanted.

Happy birthday, Jocelyn! You are an amazing mother and caregiver. I don’t know where I’d be without you! Thank you so much for being there every day and providing the support and care I need to help me in my fight against MS.

At the MSAA, we would like to hear from you. Please take this time to comment and thank the person in your life that has been there for you on your journey.

Matt Cavallo

For more information about My Story, please visit me at:

http://mattcavallo.com/blog/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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