By Terri Kuczynski, M.Div., CT
All of us give care throughout our lives, whether it is through holding a hand or helping with daily needs from transportation to bathing. We give care when we listen to another’s sadness and when we fix a meal. We give care when we send a card or manage medication.
Giving care to a loved one with MS can be very rewarding and at the same time unbelievably challenging. In some ways being a caregiver is like using a battery-powered drill. At first the drill is fully charged and the task at hand seems to be manageable. As the charge dies down, the task becomes more difficult until the drill just can’t continue. The only way to go on is to recharge the drill. If the caregiver does not recharge over time, even the smallest task becomes overwhelming.
Some ways to recharge are to:
- Ask for help. Even simple things such as getting a gallon of milk for you or providing respite care so you can take a walk around the block can make a big difference.
- Join a support group or an Internet chat room set up for carepartners. (See ‘Carepartners Connect’ below for suggestions).
- Take care of your body with proper nutrition, exercise and sleep.
- Do something — call a friend, write a letter, read — that gives you a daily break from the caregiving role.
- Stay connected with community — don’t become isolated.
- Laugh. Watch funny movies or TV programs.
if a caregiver does not recharge over time, even the smallest task becomes overwhelming.
Just recently I visited a friend who was caring for her husband. We talked about the many difficulties of caregiving. She talked about her feelings of helplessness and shared that at times she felt a lot of anger, which in turn made her feel guilty. She went on to tell me that her husband’s physical care could be overwhelming, but keeping track of all the day-to-day activities of life sometimes seemed crushing. She felt weary and alone in this role that she was so unprepared for. After we talked, I walked out of the room and, when I turned to say goodbye, I saw her struggling to help her husband transfer from the sofa to a wheelchair. I then witnessed the true meaning of giving care. In the middle of the transfer, I saw them share a loving embrace.
It was very brief, but very intentional. At that moment could not tell who was caring for whom. I saw two people caring for each other. What a great way for both to recharge.
Terri Kuczynski, M.Div., CT, is a patient/family counselor at the Rex Cancer Center in Raleigh, N.C.
Here are a few ways for carepartners to connect online.
Create their own website or visit another’s at www.CaringBridge.org. Here, carepartners can keep an online journal and photo gallery, ask for help with tasks, and post updates for friends and family who in turn can post messages of support.
Today’s Caregiver at www.caregiver.com includes a map, clickable by state, of area support groups, and a special section where caregivers can post their tips for others. It also offers articles and information on everything from nutrition tips to long-distance care.
The Well Spouse Association at www.wellspouse.org is a nonprofit membership organization that offers peer-to-peer support and educates healthcare professionals and the general public about the unique challenges that “well” spouses face every day.
The National Family Caregivers Association at www.thefamilycaregiver.org provides an online forum for caregivers to post questions or talk to others in similar situations.
The Society’s online community at www.MSconnection.org offers a secure place for carepartners to connect. Members can create a personal profile to share posts, updates, blogs, photos, videos and links, and search for other members by demographics, shared interests and more. The Society also offers a page for carepartners at www.nationalMSsociety.org/carepartners with information and resources on accessible housing, hiring home help and more. Carepartners can also participate in the Society’s Online Peer Connections program, www.nationalMSsociety.org/onlinepeerconnections. Here they select a peer support volunteer from an online database and arrange to speak one-or-one via email or telephone on an agreed-upon topic. All conversations are confidential.