These tips have been compiled by the mother of an adult dysautonomia patient.
The patient must feel they can trust you. Many dysautonomia patients have had negative experiences with friends, family and co-workers not taking their illness seriously. The worst situation is when they get the same attitude from the medical professionals that are supposed to help them.
Learn About the Condition
Both patient and caregiver can learn about the condition the patient has been diagnosed with, using reputable online sources. The more you learn about the illness the more you can understand what the patient is going through, help them advocate for the best quality healthcare and help them with tasks or medications they may need assistance with. If you attend medical appointments with the patient, you can ask the physician to provide you with information on the condition, or to recommend additional reading materials. Showing that you care enough to learn about the condition will help the patient realize you are an integral part of his or her team. Dysautonomia International provides educational information on several forms of dysautonomia.
Sometimes the monotony of a chronic illness can be the worst part of it. Patients or caregivers can get stuck in a rut or a daily grind and a sense of hopelessness may creep in. You can avoid this by setting small achievable goals for you and/or the patient. For example, when my daughter was bedridden for over a year, she wished she could still play the drums on her Wii Rockband game, but she couldn’t sit up long enough to get through a whole song. She practiced sitting up longer and longer, and playing drums from a reclined position for about a month, until she could finally sit up long enough to get through one song. She would have to do it at night just before bed, because it would totally wipe her out for several hours, but it was a goal and she achieved it. Even though it was something small and most people would think it was no big deal, this gave both of us a sense of hope and some encouragement.
Take Time For Yourself
Make sure that you do some things for yourself at least once a week so you do not burn out. You need to be in this for the long haul. Have a girls’ night out at the movies, or go to a buddies house for a football game now and then. Schedule fun into your routine so you do not forget to do it. Your physical health and well-being is just as important as your patient’s. If you are unwell, you cannot be there for them when they need you.
Try to stay calm even when you are not inside. You may have days when you and the patient just get on each other’s nerves. This is normal. Illness is very stressful for the patient, his or her family, and the caregiver. When you have a bad day, just admit it, accept it, and look forward to the next day when you can wake up and try to have a better day. Do pro-acitve things to help yourself cope with stress. Things like exercise, yoga, deep breathing, meditation, prayer, quite time to yourself, or even reading an enjoyable book, can help you burn off stress and relax.
Change of Plans
Understand it may be difficult to make or keep plans. You should learn to be flexible. Your dysautonomia patient can feel OK one minute and have a setback the next. This is not something to waste energy getting angry about. Try to take advantage of the times when your patient feels good enough to do something, so that it is not so upsetting when they can’t follow through on plans when they feel sick.
Reach Out for Help
Do not be afraid to ask or take help from others. You cannot be there 24/7. The patient may be unsure that anyone else will know what to do if they get a flare of their symptoms. If your patient requires special care, make sure the person you are leaving your patient with is well trained on what to do. Consider having this alternate caregiver spend some time with you and the patient before you leave them alone with the patient, so they can see your routine and so the patient can become more comfortable with them. Be sure to leave contact numbers for yourself and the patient’s physician, a list of medications, and a list of known allergies by the phone, in case of emergency.
Connect with Other Caregivers
It can be very therapeutic to speak with other caregivers who are caring for patients with a similar illness. Even if your patient has a very rare disease, there is probably a support group or an organization that connects people together who are concerned about that illness. Dysautonomia International maintains a list of regional and local support groups, online support groups and caregiver support groups. Most of the patient groups welcome caregivers as well. It may help you learn about your patient’s illness to speak with others who have it.