Families and arthritis

Loving and supporting someone with arthritis

There are 37 million Americans with arthritis--and that means a lot of families are affected.

One of the challenges of being a close to someone with arthritis is finding ways to live as normally as possible. Regardless of the degree of change that arthritis has brought into your life, you can help make the difference! Family and friends can provide companionship, support, assistance, human contact and love.

It is possible for your family to lead a full, rewarding life despite arthritis. However, it is up to you to make it happen.

Learn to be courageous and experience your feelings--whether they be of anger, sadness, or grief.

Then move beyond the unfairness of arthritis. Focus on the positive. Make your family's life as normal as possible. Do your part to see that the treatment plan is followed. Learn to communicate well, and make adjustments, not necessarily big changes, in your routines.

After all, it's the good times and the bad times that make up the experience of being a family. Although it can be difficult, living with arthritis has enabled many family members to cherish each other even more.

About arthritis

Common symptoms

Arthritic conditions usually cause stiffness, pain, and fatigue. The severity differs from person to person. In some people, only a few joints are affected and the impact may be very slight. In others, the entire body system may be affected, with pain and possible deformity.

Arthritis is usually chronic. This means it could last on and off for as long as a lifetime.

People with certain forms of arthritis, such as rheumatoid arthritis, may have remissions. These are periods when the disease is not active and the person may feel well and have few problems. These times can last weeks, months or years. There are also periods called flares when the disease is very active and people have many symptoms. During those times, physical activities have to be limited and extra rest is needed.

Generally symptoms of arthritis vary from day to day and even from morning to evening. Pain and stiffness is usually worse in the morning. The more the illness affects normal, everyday activities, such as working or managing the home, the bigger the adjustment. A person with arthritis may have to work extra hard at tasks that used to be easy. That can be very upsetting to everyone.

Moving toward acceptance

What affects your loved one with arthritis also affects you. Depending on the severity of the disease, people with arthritis and their family members often go through stages as they move toward acceptance of the disease.

If the person diagnosed isn't an older adult, you may wonder how he or she could have what you thought was an old person's disease. You may ask "why us?" You may be angry and begin to resent other families who don't have this problem.

Your family might have to adjust or reduce activities that were sources of pride and enjoyment. It isn't easy to remain supportive or take on extra duties when you are tired. After all, you have your own problems and worries! You may feel overwhelmed as you wonder how you will cope. You may be irritable and moody.

Many families experience sadness and embarrassment at the loss of the formerly healthy and more capable person. This may be especially true if there is a change in appearance. Some family members feel that the arthritis has made the family no longer socially acceptable.

You may deny the arthritis exists by believing it will go away or that no changes need to be made. You might find yourself saying, "Everything is fine" or "It doesn't bother me."

You may feel frustrated if you can't make your loved one feel better. You may question your right to enjoy yourself if your loved one cannot. You may keep feelings bottled up inside, rather than share them, because you don't want to add to other people's burdens by complaining. If your anger and your feelings are not expressed, you may become depressed.

What you need to do is to express your feelings, rather than hide them. Sometimes having a good cry, pounding pillows, or doing some physical work such as gardening or cleaning can help you let off steam. Grief, anger, sadness, embarrassment, denial frustration, feeling overwhelmed, depression--all of these are normal reactions to the impact of arthritis. You may not have all of them, but if you do, it is necessary to experience them. Then you can move on so that life can be lived as normally as possible.

Learning about arthritis

Before you make any changes in the household routine, you'll need to find out all you can about the annoying disease that has become a part of your life. Typically, after a proper diagnosis, the physician will work out a treatment program based on your relative's lifestyle, hobbies, and preferences. Most treatment programs involve taking medication properly, protecting one's joints, saving one's energy, managing stress, and following an exercise program.

If you can, go with your family member to medical checkups, especially if there are problems or questions. Some people find it helpful to write down questions ahead of time. Express your worries or concerns, and find out if there are any changes to expect.

If, for example, you have been told that your husband will no longer be able to cut the grass or play tennis, find out the reason why. Then find out what can be done to improve his ability to function.

Remissions and flares

It's important that you know that during a remission, people with arthritis and their families may feel like their old selves. They may be able to get back to the familiar, "normal" routine. Often they forget that arthritis exists. During this period, the person with arthritis may overdo and try to make up for lost time. You can help by making certain that the treatment program is followed, even if there are no symptoms. Even during remissions, visits to the doctor should be continued, as the doctor suggests. Your loved one should take prescribed medicine, and still get proper amounts of rest and exercise.

A flare can occur at any time for no apparent reason. Some people's flares tend to follow stressful times such as holidays or important life events. A severe, unexpected flare can be trying on everyone. The family may again experience feelings of anger and depression, worse than before. It's important during these times to keep talking and pulling together as a family.

Be skeptical of advice

Neighbors and other persons will ask questions about arthritis. Be prepared to give them concrete, factual information. They may offer advice, because there is a great deal of folklore about arthritis. No matter how sincere a person may be, think carefully before accepting any advice.

For example, ignore a personal account of how a cherry juice diet cured someone's arthritis. Most forms of arthritis have no cure. However, a person can improve for a short time after trying almost anything new. That is why your spouse or relative needs to stay with the prescribed treatment plan. If followed, it will help to lessen inflammation, ease pain, and maintain range of motion. It will also slow down or prevent joint damage.

Coping with arthritis

Laughter

Positive attitude

If your family is determined "not to let arthritis get us down," then it won't. If your family believes that there is no problem too tough to handle, your family will manage the most difficult of times.

With this kind of positive attitude, the family can focus on ability instead of disability; what does work instead of what doesn't work; what a person is instead of what a person does; and living instead of worrying about living.

Faith and inspiration

See the big picture

There is more to life than just arthritis!

Some people get so overwhelmed by their arthritis that they lose sight of other things in life. Don't let this happen to your relative. Encourage him or her to be active and seek new hobbies and friendships. You can help by sharing your interests and including him or her in activities, even if slight changes must be made.

Encourage your entire family to practice a "wellness lifestyle." This involves eating a well-balanced diet; getting regular exercise (in addition to any prescribed exercise program); controlling one's weight; enjoying an active social life; practicing relaxation; and combating stress and depression.

Help others and accept help

Get to know other families who are living with arthritis. Many family members have found satisfaction in sharing with others their own experiences with arthritis. Your experience and knowledge of the disease is valuable, especially to those who are having a hard time adjusting. Sharing what helps you understand and cope may be inspiring to them. Sharing works both ways--it also helps you to feel good about yourself.

In order to help make the difference in each other's lives, you need to be patient and supportive of each other. If you feel frustrated with your loved one, try saying: "I feel so angry sometimes when I know you're hurting. I wish I could do something about it." This reminds the person that you care and that you hurt, as well.

Family members can learn to bolster each other in small, thoughtful ways. Find ways of making the person with arthritis feel important and needed. Show that you value his or her company. Be generous with compliments. Keep in mind how helpful kind words are on days when you feel low.

For example, you can give a back rub, run bath water, make a meal, or create a new adaptive device. You can also share a new hobby or offer a car ride in the country. Your smile alone can be a big boost to another's spirit.

Over time, you will learn the difference between helping when it is needed and helping too much. Always pampering your loved one can, in the long run, detract from his or her self-worth. He or she needs to remain as independent as possible. Try to encourage your relative to achieve new goals and ideas.

Don't forget to pay attention to your own needs for rest and relaxation. Seek support from friends, also. To remain a caring and giving person, you need to receive as well as give.

If a spouse has arthritis

Arthritis intrudes into people's personal lives. This can be felt dramatically in the marital relationship. However, keep in mind that your spouse is the same person he or she was before the impact of arthritis.

Although lovemaking may need to be adapted somewhat because of pain or limited mobility you can still have intimacy. A little planning helps. For instance, taking pain medication and a warm bath ahead of time may make for a painless experience and a more relaxing one. Also, keep in mind that gentle touching is an important part of intimacy that isn't affected by arthritis. Letting each other's needs be known is the key. Being honest with each other can help a couple through the toughest times.

If a parent has arthritis

If you're a teenager, you're going through physical and emotional changes that may present challenges from time to time. Having a parent sick with arthritis while you are going through your teen years may be extra hard on you. Make sure you find a positive way to express your anger, fear, frustration, and sadness about your parent's arthritis. Discuss these feelings with your parent or parents, friend, teacher, or school counselor. When you feel your emotions are bottled up inside, do something such as jump on a trampoline, ride your bike, have a good cry, pound pillows, swim, dance, or work out.

Keep in mind that it isn't anyone's fault that your parent has arthritis. The disease isn't contagious, like the flu. Your children won't necessarily get it. You will need to be patient with your parent. Remember it works both ways--your patience with your parent enables him or her to be patient with you.

If an elderly parent has arthritis

If your elderly parent is disabled, you may need to make arrangements within the family to provide help with daily activities. This kind of help is called custodial care. Few insurance plans today pay for this kind of care in a nursing home. Contact family service agencies in your community that offer home health aids or services. Many of these agencies adjust their fees to meet all income levels.

Sharing responsibilities

Families often find that in order to manage the arthritis properly, they need to create new ways of doing things. Think of the family as a team, working together with a common goal.

Each member has an important part to play and a job to do. Small children and adults as well can understand this approach. Giving everyone a voice will help create a sense of responsibility and teamwork. It will also lessen the need for your relative to have to ask for help again and again.

To begin with, sit down together and evaluate the household chores. As you talk and plan, be specific. Decide what tasks will have to be done by whom and when they will need to be completed.

For example, maybe a teenage son can collect and take out the garbage and mow the lawn on Tuesdays. Perhaps a teenage daughter can wash and fold clothes and put them away on Thursdays. Some families find that using a chart of household chores is useful.

Take a good look at the chores your relative used to do. Perhaps with a few changes they can still be done. If your loved one always cooked the meals, maybe he or she can still handle it.

Here are some cooking tips for a person with arthritis:

• Fix double amounts and freeze one meal.
• Prepare for the week ahead on the weekends, so the entire family may be able to help.
• Make simpler meals so that the children can help.
• Use more frozen or packaged foods.
• Reorganize the kitchen. Adapt handles on cupboards and drawers. Use lightweight utensils.
• Use aids such as faucet grips, jar openers, and reach extenders to make tasks easier.

In addition, take a good look at holiday rituals and other family customs. Perhaps with physical limitations they are no longer possible. Or maybe they are still possible, but need to be changed slightly.

Realize that you may need household help sometimes. When the father or mother is in bed, someone may be needed to cook and care for the children. When a person who is living alone has a flare, he or she will need help with shopping, cleaning, or cooking. Usually these situations can be handled by a part-time housekeeper or homemaker for a few weeks or months at a time.

Being flexible

Learn to be flexible and make short-term plans for outings, trips, and other special events. Create back-up plans in case your spouse or relative isn't feeling well enough to take part. Being flexible allows the family to create a workable situation so that the impact of arthritis is lessened.

Here a woman explains how her family created a slightly different way of doing things:

"Our family liked softball. The children were always on the team and Al often coached. We were all involved. The children and I would watch the team play and we often had a picnic at the park afterwards. We were really good--we won several trophies! Then when Al got severe osteoarthritis, he couldn't be as active as he once was. We were all disappointed and sad when he couldn't coach anymore. But Al loved softball so much, and knew what it meant to the family. We still attend every game, and discuss all the details about it afterwards. We still have picnics and still have a good time--even though Al's involvement is different. Sure we had to make some slight changes, but we were determined not to give up softball!"

By changing family routines slightly, life can be made as normal as possible. Arthritis may not seem like such an intrusion.

Talk regularly

To cope with the added problems that come with arthritis, it helps to know how to talk with one another. This section offers tips to help you communicate.

All families experience stress when faced with new or challenging events. For most families, the problems that come with arthritis are stressful. Besides many of the small changes that must be made, there are also medical bills to pay. Because of the up-and-down nature of arthritis, there is also uncertainty and fear of the future. Sometimes wage earners are forced to work less or may even have to quit their jobs because of disability. This then involves loss of income, more problems, and possible major changes in roles. Someone else in the family may have to become the breadwinner. All of these possible situations can be highly stressful.

To manage these situations in a positive way, it helps to talk regularly--before tensions and fears build up. If you address issues as they come up, they are less likely to become bigger problems that are harder to solve.

Here are some guidelines for talking out problems:

Talk with--rather than to--a person. This means listening and trying to understand what the person is saying, and not telling a person what to do. Talking is a two-way street. Most people respond better when they feel they have gotten their points across. They also respond better when they are asked rather than told to do something.

Use "I" instead of "you" statements. This means saying "I feel..." rather than "You make me feel...." Expressing yourself in this way means you are taking responsibility for your thoughts and feelings. You are not blaming them on others.

Be an active listener. Try to understand what a person is thinking and feeling, as well as what he or she is saying.

Social workers or counselors

If family conflicts can't be resolved, you might want to seek professional guidance from a counselor or social worker. Many families find it helpful to discuss their situation with a professional before problems get worse.

Anger, despair, and feeling helpless are not unusual for a member of the family or the person with arthritis. No one should feel under constant pressure to be cheerful. Periods of depression are to be expected. However, if these feelings last for a long time and cause major changes in mood or behavior, professional help may be needed. Watch for the following warning signs in yourself, the person with arthritis, or other family members:

• Excessive use of alcohol or other drugs.
• Personality changes, such as uncontrolled temper, constant anxiety or withdrawing from social activities and life for a period of months.
• Ongoing feelings of sadness, frequent crying spells, inability to sleep, sleeping most of the time, poor appetite, neglect of appearance or hygiene.
• Physical or verbal abuse.
• Thoughts or any mention of suicide.

Family service agencies and community mental health centers offer a variety of counseling services. Most of them charge fees that are based on the family's ability to pay. They are staffed by professionals who are dedicated to helping families deal with problems.

A medical social worker at your local hospital or clinic may be able to spend time with you. You may wish to contact your minister, priest, or rabbi for support and counseling. Often, care groups at churches and synagogues make home visits and assist people with special problems.

Many people have fears about talking with a professional. Don't feel ashamed or be afraid that you will be judged or criticized. Instead, know that you are courageous to do so. Expect to see a sensitive, caring person who will help you by discussing and dealing with your situation. You are smart to seek this kind of help. It shows that you care about your family. It also can provide hope and restore your confidence when you need it most.

Other members of the health care team

Credits

Some of this material may also be available in an Arthritis Foundation brochure. Contact the Washington/Alaska Chapter Helpline: (800) 542-0295. If dialing from outside of WA and AK, contact the National Helpline: (800) 283-7800.

Adapted from the pamphlet originally prepared for the Arthritis Foundation by Anne Weisenborn, MSW, and Alison J. Partridge, LICSW. This material is protected by copyright.