Living with Parkinson's disease is challenging for caregivers as well as patients. In this section, patient authors offer tips and suggestions for dealing with the emotional, social, and basic medical issues of caregiving.

The Foundation strongly recommends that care and treatment decisions related to Parkinson's disease and other medical conditions be made only in consultation with a patient's physician or other qualified medical professionals. The presence of links in this section and elsewhere on the Web site does not signify an endorsement by The Michael J. Fox Foundation for Parkinson's Research, and the Foundation is not responsible for any information found on other Web sites.

What is a caregiver?
Defined most broadly, a caregiver is anyone who is involved in providing assistance or treatment to improve the life of an ill person. Doctors, psychiatrists, nurses, spouses, other family members, and friends can all be considered caregivers. For the purposes of this section, a caregiver is defined as the person who has primary responsibility for the general well-being of a PWP, or who is otherwise intimately involved with care issues. PD is a disease that progresses slowly. A PWP's symptoms may not substantially limit his or her physical abilities for many years. During that time, the necessary care may consist primarily of understanding and emotional support. Later, as the disease does progress, a caregiver takes on more responsibility for physical tasks the PWP can no longer manage.

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How can I care for a PWP when I don't have any medical training?
Most likely, you didn't wake up one morning magically transformed into a "caregiver." Every close relationship has an element of caregiving in it. That's what family and friends do-they take care of each other. You should not need special medical training to take care of any but PWPs most advanced in their disease. Even as the disease progresses, it is extremely unlikely to bring on any symptom requiring immediate treatment by someone with medical training. The caregiver's role consists mostly of helping with the tasks of daily life that may become difficult or impossible for the PWP.

There is one exception of note: if the PWP has trouble swallowing food, it may be useful or even life-saving to learn how to use the Heimlich maneuver to dislodge food stuck in the throat.

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So, if physical problems are minimal, what kind of help does a caregiver provide?
Early in the disease, most PWPs mostly need understanding and emotional support. How a caregiver can best provide these will depend on the personality and temperament of the PWP and the nature of your relationship in general. Dealing with a diagnosis of PD is similar to dealing with any great loss. Some PWPs react with denial, fear, anger, acceptance, or even guilt for "bringing this disease into the house."

Like any other important development in the lives of two people close to each other, whatever the relationship, a PD diagnosis should be discussed as openly and honestly as possible. Don't fall into the trap of considering your own concerns as a caregiver less important than those of your PWP. A Parkinson's diagnosis is a life-changing event for everyone affected. Talking openly about what you are experiencing can help prevent resentments from surfacing further down the road.

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I'm worried that our friends are getting tired of conversations that are "all Parkinson's, all the time" with the PWP I care for. What can I do?
One of the hardest things for some PWPs to deal with is the fact that even their closest friends generally do not want Parkinson's to become the focus of their relationship. It is not always easy to accept the fact that friends can care very much about your health and still not want to discuss it as frequently as you do, but it's true. One of the benefits of joining a Parkinson's support group (see below) is that support group members rarely get tired of discussing PD. Having a forum for discussing PD outside one's circle of family and friends can provide benefits for both the PWP and his or her caregiver.

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Why is it that I never feel I am doing enough as a caregiver?
No caregiver, no matter how skilled or empathic, can make PD go away-it is progressive and incurable. With such a disease, "caregiver" does not mean "healer." To the contrary, no matter how much the caregiver does to make the PWP's life more comfortable and enjoyable, the PWP's health will worsen as the disease progresses. This can give rise to a great deal of understandable frustration on the caregiver's part. It's important to give yourself a break.

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Why does my PWP seem to be getting messier and less concerned with personal appearance?
The rigidity, slowness, and stiffness that come with PD make it more difficult to perform simple tasks or even get out of a chair. This is one reason that many PWPs develop a habit of not picking up after themselves or keeping things neat. PWPs are easily fatigued, and movement difficulties can make a mildly unpleasant task seem impossibly daunting. Also, cognitive changes may make it difficult for some PWPs to initiate and follow through on everyday tasks. It makes sense to divide chores to account for the strengths and weaknesses of each party.

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Sometimes I feel like my PWP isn't really there-or like he or she simply isn't the same person anymore. What is happening and can either of us do anything about it?
There may be several explanations for the apparent remoteness or personality changes a caregiver may perceive in the PWP. First of all, clinical depression shows up in 50 percent of PWPs. This is not a reaction to diagnosis-it is a poorly understood clinical feature of the disease. Depression can cause a PWP to withdraw and seem not to be there, or not to be his or her old self. But the good news is that depression is treatable. If the PWP is exhibiting signs of depression, contact a qualified physician.

Most PWPs also experience fatigue, which can make them less interested than they used to be in socializing or engaging with friends and family. It is often the case, however, that once the PWP gets out of the house he or she will shed that listless manner and become engaged with others. So if you convince the PWP to take that first step and get out or have friends over, he or she may quickly reappear and re-engage.

Medications can also cause a range of side effects, from a sedated appearance to irritability. If a sudden change in mood or behavior follows a change in medications, consult a qualified physician about the possibility of side effects.

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What should I do when my PWP gets irritated at my offers to help?
Most PWPs cherish their independence precisely because they are in the process of losing it. If you are receiving strongly negative reactions to offers of assistance, it's wise to balance your sympathy for the PWP's difficulties with respect for your right to be treated civilly. Gently remind the PWP that you cannot read his or her mind. Explain plainly and without anger or defensiveness that your offers of help are not meant to embarrass or diminish him or her, but come from your desire to make life a little less difficult.

In the long term, it is worth asking the PWP for some guidance as to when to offer to help and when to leave the PWP to go it alone. This will not eliminate the problem completely, but it can help reduce the frequency of misunderstandings and remind the PWP that a diagnosis of PD does not come with special license to treat others without regard for common courtesy.

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It sometimes seems that my whole life revolves around caring for my PWP, and I feel frustrated, angry, and worn out. Do other caregivers ever feel this way, and is there anything I can do about it?
Caregivers can easily forget that they have lives outside of PD. The longer you care for your PWP, the more likely it is that this burned-out feeling will occur. It is a natural response to a difficult situation. To counter it, schedule time off for social activities and time alone. Go out with friends on your own, take classes that interest you, or enjoy some physical activity on your own. Don't neglect the joyful things that are important to you. For PWPs who need constant care, check out local programs that will take care of them on a temporary basis (sometimes called "respite care").

Your needs and personal contentment are as important as those of your PWP, and should be treated as such. Also, it is important to keep in mind that you cannot cure the PWP no matter how hard you try. In the long run, you may be of more help to the PWP by recognizing what you can't do as well as what you can, and taking time to pursue your own interests.

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My PWP is my spouse, and sometimes all I want to do is leave. How can I have such thoughts?
Take comfort knowing that such thoughts are not at all uncommon. Caregivers are naturally in a tough spot emotionally in this regard: theoretically, they enjoy the enviable option of leaving PD behind. The PWP doesn't have this option. Leaving his or her partner will not change having the disease, so but the only way forward is to manage the disease in the best way possible.

Still, merely experiencing thoughts of leaving-no matter how fantasy-based-can understandably cause a great deal of guilt and distress in the minds of many caregivers. If you are generally happy in your relationship, it's best to accept these thoughts, understand them as a normal part of being a caregiver, and move forward without giving them too much credence or worry.

If, however, the relationship is troubled by problems beyond those that can reasonably be attributed to living with Parkinson's disease, talking about them with your PWP openly and honestly is the best course. You may consider seeing a counselor or therapist together to help you sort out your issues. Otherwise, resentments are likely to grow, which will make it more difficult to think about the situation rationally.

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My PWP has chosen not to reveal the diagnosis of PD. I want to honor that decision, but I don't feel comfortable being evasive or in some cases having to lie. How can I best deal with this situation?
There is no simple answer to the question of how best to support the PWP and still feel comfortable with oneself. A PWP may choose not to reveal his or her diagnosis for many reasons, including social, privacy and employment concerns. Sooner or later, a caregiver is likely to be in a position of feeling as though he or she must conceal the diagnosis to honor a PWP's wishes.

Factors to be weighed carefully include how deeply each person feels about the issue, the seriousness of any social concerns for both of you, and any possible career and economic fallout (now or in the future). In the final analysis, it's best to try to work out an agreement that both of you can live with. The agreement should take into account both your motivations and the consequences that are likely to result from a decision to continue to conceal or to reveal the diagnosis (including when, how, and to whom).

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Are there support groups for caregivers as well as PWPs?
For caregivers, support groups come in three flavors: those that include PWPs, those without them, and those with PWPs that also include separate breakout sessions for caregivers. Each offers the opportunity to share experiences and information and receive comfort and a sympathetic ear. It's really a matter of personal preference-you may want to try them all to see which is most helpful for you. Also, keep in mind that each group has a different "personality."

If you think you will benefit from a support group but have had a bad initial experience with one, try another before deciding that support groups are not for you. If there are no groups in your area or you don't like those that are, consider starting your own group.

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How do I find a support group?

• Your PWP's neurologist or treating physician (or a member of his or her office staff)
• Local hospitals (community outreach or similar services)
• Community calendars in local newspapers
• The phone book
• The National Parkinson's Foundation support group Web site
• American Parkinson's Disease Association

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What other Web resources are there?
Among the potentially useful Web sites for caregivers are:

• National Family Caregivers Association
• Empowering Caregivers
• Family Caregiver Alliance
• Well Spouse Organization
• Parkinson's Disease Caregiver Information
• Family Caregiver Support Network (FCSN)
• National Organization For Empowering Caregivers

This document was last updated on December 4, 2006.

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