The RA Caregiver's Top 10

When you love someone with rheumatoid arthritis (RA), it is not always easy to know the right thing to do. People with chronic pain can often be irritable, distracted, and sad. They may want you to act "normal"...but what is that exactly?

That's why we've created the RA Caregiver's Top 10. These tips are meant to bring you and your loved one closer while recognizing the common difficulties caregivers experience.

Some items might be more applicable to your specific situation than others. But in time, you may find that each tip has something to offer you. And in helping yourself, you can help your loved one with RA.

Research Only On Request

With the best of intentions, you may discover new ways to help a person with RA - new drugs, diets, or exercises. But you may also have noticed that the person with RA is not always overjoyed by your hard work. And you may wonder why there isn't more appreciation for your efforts.

That's because the person with RA may view your research as a criticism of their current health regimen. Or it might appear as though you don't think they are doing enough or trying to help themselves.

Knowing this, a basic rule of thumb is to ask before you do your research. You may have read about some new thing that could help your loved one with RA and want to research it more. Mention it to your loved one with RA and ask if they'd like you to find out more. This gives the person with RA a say and some control over the flow of information they are receiving.

The Bathroom Is for Private Time

It is natural to be concerned about a person in pain. You can see how exhausting pain can be and how it can deplete a person's strength. It is no wonder that when a loved one with RA is behind closed doors, you may be unsure of how they're feeling. You might want to knock or call out to them.

Regardless of their medical condition, however, most want their privacy when they go to the bathroom - even if they're just brushing their teeth. The concerned affection can sometimes seem intrusive at best and infantilizing at worst. Neither is productive.

Sometimes, everyone needs a little space, especially while in the bathroom. So try to balance your loved one's need for privacy with your concerns for checking in on them to make sure they're OK.

RA Is Not the Person

Of course, you want to let the person with RA know that you care about them, are concerned when their pain flares up, and want to know in general how they're doing. But sometimes, a person with RA might prefer to talk about anything other than their pain. So hold off on asking how they are feeling, if they are in a lot of pain today, or any of the more indirect ways you would express your concern.

Instead, try focusing on loving and caring for them and not their issues with RA. Simple words - it's great to see you, I've missed you, I like waking up with you - may convey your attachment to the person with RA and not your attachment to the RA itself.

Don't Change the Rules

Irritability is one way in which people react to having RA; anger is another. It may seem like a kindness to overlook these feelings and accept these behaviors. Oddly enough, the acceptance or inattention to these behaviors can make a person with RA feel more ill, different, and distressed.

Don't fight back, but do make it clear if your feelings are hurt or if you have been treated unfairly or rudely. While this may be uncomfortable for both of you, it will create a solid foundation and be a great opportunity to discuss some common communication issues, even for people who feel they do not have communication issues.

People with RA want to be treated like everyone else. They do not want to feel "special" because of their condition. When they are treated differently, it can leave them feeling isolated and lonely. A loved one with RA needs you regardless of how uncomfortable some of your discussions can be. Honesty, with a measure of respect, makes relationships flourish.

Distraction Is More Healing than Silence

Pain can make a person shut down. This can be very distressing and leave a person feeling helpless and hopeless. If a person with RA does not feel like talking much, they may still very much want to your company.

Simple activities can provide the distraction they need and desire to not focus on the pain. Whether it's discussing a movie, playing cards (if they can comfortably use their hands), watching TV with family or friends, all of this can be very beneficial. Other options include, working on crosswords or doing jigsaw puzzles together, reading aloud to the person with RA, and listening to music together.

Creating distractions is not at all disrespectful. It is recognizing that a person with RA needs to be stimulated, focusing on things other than their pain.

Redefine "Complaining" as Sharing

Sometimes a person with RA does not want to discuss how they feel because they view it as complaining. They may feel that people will shut them out or tire of listening to them talk about their difficulties with RA.

Giving a voice to one's discomfort and pain takes both power and energy away from it. Not talking about the discomfort and pain can make these sensations even more overwhelming. When a person with RA tells you how they are feeling, thank them for being honest. Try to appreciate that they're sharing their personal and private feelings.

Redefining "complaining" as sharing will promote better communication. And in time, it can lead to light-hearted moments and conversations that are inaccessible when a person feels they must keep their feelings and thoughts to themselves. Remember, when a person with RA shares how they are feeling, always thank them for sharing.

The "Eyes" Have It

No matter what you and the person with RA are discussing, always try to maintain eye contact. In American culture, eye contact communicates interest, affection, and support. However, other cultures have different ways of communicating.

Looking down, reading, watching television, or eating when someone is talking can indicate disinterest and annoyance. Chronic pain conditions can be very isolating. Eye contact and being actively involved can help to diminish those feelings a person with RA might have.

Get Physical

RA can cause periods of inactivity. This may provide some short-term relief for the person with RA, but tends to be less helpful to a caregiver. Caregiving is often called a "labor of love" because it is hard work.

You will be a better, more patient caregiver if you remain physically active. A long walk or other low-impact exercise will give you time to think - and a chance to release any stress you yourself may be experiencing.

Always consult a physician before you begin an exercise regimen to determine what would be most helpful and healthy for you.

You Need an Outlet, Too

A devoted caregiver of a person with RA needs additional social outlets. It could be a book club, an interesting adult class at the local college, or volunteer work for a community program.

Another type of outlet is called "journaling," in which you write down your thoughts and feelings. Expressive arts can help you express your feelings and thoughts in images or colors, through the use of clay modeling, or through dance movements and acting.

Learning basic meditation and guided imagery can give you an opportunity to take a break from caregiving and replenish yourself.

Take Good Care of Yourself

Those of you who have traveled by airplane will be familiar with the recommendation to put on your own oxygen mask before helping another in the event of an emergency. In the same way, it makes good sense to take good care of yourself if you intend to take care of someone else.

You need energy, rest, and nourishment. Eating a balanced diet of healthy foods, drinking enough water and other healthy fluids, and getting enough sleep are the foundation of good self-care. When you're a caregiver, regular checkups with your doctor and taking any regularly prescribed medications are important and can often be overlooked.

These 10 helpful tips can help you continue to be a successful caregiver. These hints are meant to bring you and your loved one closer while recognizing the common difficulties caregivers of people with RA experience. Solutions are the key. Solutions help you to feel in control in a participatory way.

Some items might be more applicable to your specific situation than others. Seeking help for yourself through education (such as with this Web site), exercise, and self care are as much a part of being a supportive and loving caregiver as the attention, time, and effort you spend helping your loved one with RA. Caregivers at ReachBeyondRA.com