This month we focused on offering support and resources to the caregivers providing love and support to many with MS. We shared tips, stories, and resources for the caregivers who have dedicated their lives to helping others. On behalf of the entire MSAA staff, we say Thank You!
“It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself.”
–Ralph Waldo Emerson
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.
By Bob Rapp
It’s another one of those nights. The ones that you awake at 2 am for no particular reason and can’t fall back to sleep. The one I love is soundly sleeping beside me making those cute, soft, sleeping sounds. As I wait for the sandman to return, she turns to her side and I hear a soft but audible ow, ow, ow. She still sleeps but I know it is the cramping in her legs that she is feeling. While it passes quickly, I am left to contemplate the 3 emotions that circle around me like the moons of a planet. And like moons these emotions are present but are sometimes in hiding.
There is my sense of helplessness in small events such as her leg cramping and larger ones as she fights through her fatigue and struggles to get out of bed for the day. What can I do? I can’t stop the pain and discomfort. Medicine and science have yet to eliminate her symptoms or cure her illness. As her partner, I try to provide the care, understanding and support needed but the frustration I feel because I can’t “do more’ is real and at times heart breaking.
There are times when the uncertainty of MS leads to thoughts of what the future may bring. It is accompanied by anxiety and sometimes fear. Thankfully, like the moon that circles its host planet infrequently these emotions appear only occasionally. They are worthy of thought and planning but I have done a pretty good job of focusing on what is directly in front of me. The here and now. Getting as much as we can extract from each day.
The emotion that shines the brightest, the one that exerts the strongest gravitational pull and the one that dominates my emotional sky is my admiration for her indomitable spirit. She does what she is able to proactively manage her MS. She is adherent to her medications. She exercises up to two hours each and every day. She works part-time and wants to travel everywhere. And she even finds time to help with her own parent’s care, provide guidance to her two adult children and take care of me (sometimes not an easy job). She is not a Superwoman. She doesn’t climb mountains or run marathons. She is just someone trying to do the best she can to live the best life she can and by doing that she teaches me something every day.
I certainly would not wish a disease like MS on anyone. I know having the choice I would eliminate it from our lives. There is however much to be learned and much to be inspired by. In some very strange ways there is a richness of life that is gained by making this journey together.
What as a care partner are your emotional “moons?”
*Bob Rapp is the Chief Operating Officer of MSAA. He has been a care partner to a person living with MS for more than a decade.
When you are on a plane the flight attendant always guides you through the steps of what to do in an emergency. One of those steps involves the oxygen mask. They always say to secure the mask to your own face before assisting your child or others. The logic is that if the plane loses oxygen and you faint or become incapacitated you will not be able to help anyone else (let alone yourself).
Many times a caregiver or carepartner is so focused on all the things they need, want, or have to do for another that they prioritize the “to do’s” and completely forget about their own needs. It is important to remember that everyone needs help at some point or other, even the designated “helper.”
But how do I ask for help?
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:
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!