4 Tips for Caring for Someone With Scleroderma

If someone you love has been diagnosed with scleroderma, you may be concerned about how to best care for them and what you need to do to ensure they maintain a good quality of life. You will become an integral part of their healthcare team which may be challenging at times.

We’ve compiled a list of tips to help you to give the best care to your loved one with help from the Scleroderma Foundation.

Educate Yourself

• The more you know about scleroderma, the better caregiver you’ll be. Ask your loved one’s healthcare team questions about the progression of the disease, the treatments, how the medications work — don’t be afraid to ask them to simplify things for you if you think they are using too much medical jargon.
• Read about the latest research and clinical trials and sign up for newsletters from reliable sites and Facebook pages that deliver up-to-date information about scleroderma.
• Ask the healthcare team to train you in managing treatments and medications at home and ask if there is anything else you may need to know about caring for someone with the condition.

Get Organized

• Keep all your loved one’s doctor and hospital notes, test results, appointments, medication information, and insurance details in a folder so that information can be easily accessed.
• If your loved one requires IV treatment, keep a first-aid kit in the home with a thermometer, catheter repair kit, backup pump, blood pressure monitor, and a small cooler box or ice packs that can be used to cool medications down if you’re out of the house.
• If your loved one is on oxygen therapy, you’ll need to keep the following in your home: an extra prescription and a photocopy to keep on your person, a portable E-tank and flow regulator in case of a power cut, spare nasal cannulas, spare tubing and connectors.
• Make lists of things you need to do for your loved one on a daily, weekly and monthly basis. Keep a large calendar with all appointment dates written in a prominent place.
• Keep a log or journal so you can see what works and what doesn’t work in terms of care for your loved one.
• Come up with an emergency plan and give a copy to other family members so everyone knows what to do.

MORE: Scleroderma News columnist Jessica Massengale writes an open letter of thanks to her caregivers

Don’t Panic

• It may seem overwhelming at first, but you and your loved one will soon settle into a routine. Learn to take each day as it comes and go easy on yourself — there will be good days and bad days.
• Look after yourself: your health is important, too. Go see a doctor if you’re feeling unwell or feel you aren’t coping well emotionally.
• Don’t be afraid to ask for help from friends, family and your loved one’s healthcare team — you shouldn’t have to do this alone.
• Join a support group. There are many Scleroderma Foundation Chapters around the country and online communities that can offer emotional and practical support.

Show Respect

• It’s important that you continue to show the same level of respect to your loved one as you did before they got sick.
• Allow them to make their own decisions regarding their treatment and other aspects of their illness.
• Encourage them to be as independent as possible, don’t assume they can’t do something for themselves — ask!
• Give them space when they need it and use the time to do something nice for yourself.

MORE: Four tips for managing scleroderma on a daily basis.

Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.