Caregivers Make A Difference By Offering Emotional And Physical Support
Though your loved one is the one who deals with the physical struggles of SBS, as a caregiver, you can make a huge difference in his or her life.
Helping with Nutritional Needs and Equipment
Depending on your loved one’s exact situation, a special diet might be maintained along with or instead of tube feeding or total parenteral nutrition (TPN). If eating and drinking is approved by their doctor, it can be helpful to talk to your loved one or their doctor about their specific SBS nutrition guidelines. That way, if your loved one is comfortable, you can help with grocery shopping and preparing meals.
Since nutrition requirements can be tricky, work with a registered dietitian or certified nutrition support clinician to help with meal planning.
If your loved one relies on tube feeding or TPN at home and accepts your offer to help, a nurse or representative from the home care agency should show you what equipment to use and how to use it. Remember to ask questions and even take notes when he or she is giving you this information. Don’t be afraid to speak up or ask for additional help if you’re not comfortable with the equipment. You want to feel confident handling it so you can calmly help your loved one (especially if there’s a problem).
People with SBS often have a hard time participating in the things they used to enjoy. If your loved one wants your help in this area, learn what you can about these activities. This way you may be able to help your loved ones enjoy their former hobbies, like dining out and traveling. If something they used to love now seems too complicated to take part in, see if there is a way to modify the activity so they can still participate. Otherwise, find something else to do together or simply take the time to listen to their frustrations about the situation.
From a practicality standpoint, you can also plan a lot ahead of time to make outings less complicated. Before leaving home, find out where restrooms are located on your route and at the destination. And always have the essentials handy. Carry a bag with you or keep a kit in the car filled with toilet paper, disposable pads, extra underwear, a change of clothing and anything else that might come in handy.
Always keep a few restroom cards, provided by The Short Bowel Syndrome Foundation, handy. These are perfect if there’s a line for the restroom and you need to cut ahead. To find them, simply visit The Short Bowel Syndrome Foundation home page.
Providing Emotional Support
Life with SBS can be taxing, and sometimes the emotional support you offer can be more important than your physical support. Living with SBS often means significant adjustments to many aspects of life, like sleeping, eating, dressing and bathing. These little changes can add up and make life feel unrecognizable. This can result in frustration, despair, anxiety and even guilt for both patients and caregivers.
It can also help to find a counselor for your loved one (or you!) or reach out to online SBS communities. Talk to your doctor or insurance company to find out what type of counselor would be best for your situation and how to set up an appointment.
If you or your loved one start to feel this way, it may be time to seek professional help. There are several caregiver-specific resources you can reach out to that may be able to help you and your loved one.
There are also forums hosted through The Oley Foundation that focus on information and support for those on tube feeding or TPN. But remember that an online forum shouldn’t replace the advice of a doctor. So, if you have a medical question or concern, it’s best to ask your healthcare provider.
Support for You
It’s easy to forget to take care of yourself when you’re busy taking care of another. But it’s important to keep your own physical and emotional stressors and health in mind. We’ve put together some tips to help you as a caregiver help yourself. Read them here.
When You Can’t Be There
If your loved one lives alone or far away from you, you should discuss the option of hiring in-home care. Your loved one’s doctor should be able to determine his or her needs and then refer you to a reputable and local resource that specializes in caring for people with gastrointestinal disorders.
When choosing help, always consider quality and clinical expertise, insurance coverage, service area/distance and the supplies provided.