The Caregiver Role

The role of a caregiver is usually one that a person must take on without any prior warning. It is a major change to anyone’s lifestyle. A caregiver must be on-call twenty-four hours a day. They must always be on their toes. They must be organized, well informed and watchful. They must be very patient, helpful and warm-hearted towards their loved one’s changing physical/mental condition. All this is difficult to master. A caregiver must also have inner strength and determination to carefully balance the new demands that lie ahead.

We hope the information in this section helps define the role of caregiver and sheds light on the importance of this role. It takes a special kind of person to care for an ill or disabled loved one.

The symptoms of Parkinson’s disease vary.

It is important that caregivers understand that this disease affects different people in different ways. In other words, the symptoms won’t always be the same in all patients.

Since there is such a wide variety of symptoms, caregivers should not jump to any conclusions if Parkinson’s disease is suspected. Even if it is diagnosed, they should not expect a “worst!”

The early signs of Parkinson’s disease are often subtle.

Some form of a tremor may be the first symptom noticed – but not always. Other early symptoms may include a patient becoming shier, or perhaps showing signs of depression.

A softer voice may be noted with some patients. In other patients, an early symptom might be that handwriting becomes harder to read (smaller or a bit scratchy).

Some patients have even complained of not being able to play golf or tennis as well as usual. They don’t realize that this may signal the presence of Parkinson’s disease.

Many patients who display the most common symptoms of Parkinson’s never experience anything worse.

The most common symptoms of Parkinson’s disease are tremor, muscle stiffness, slowness of movement, and/or sexual problems in men. Even with these symptoms being the most common, not all patients experience them.

In cases where these symptoms are present, the disease can be managed successfully for many, many years, especially with the help of prescription drugs. Often, patients taking these drugs may never experience the worst symptoms of Parkinson’s.

Caregivers are strongly encouraged to go with the patient when visiting their doctor if Parkinson’s disease is suspected.

The caregiver’s view is often the most important link in helping the doctor make an accurate diagnosis. That’s because some patients may not be able to notice – or may not be willing to admit – the first symptoms. Indeed, many patients may think (sometimes correctly, sometimes incorrectly) the symptoms are part of the aging process.

Also, because symptoms of Parkinson’s disease may be hard to notice, it probably makes the most sense to have an evaluation performed by a doctor who routinely works with Parkinson’s patients. At the very least, get a second opinion after an initial examination by a family doctor.

The symptoms that are the most difficult to manage usually happen in a small number of patients.

When they do occur, they tend to show up much later in the course of the disease. These more serious symptoms include patients having problems maintaining their balance, periods of extreme confusion or hallucinations, or more severe depression and/or withdrawal.

Caregivers may find it impossible to effectively take care of patients with these serious symptoms. In such cases, some form of professional assistance or nursing home support is generally recommended.

Pharmaceutical drugs have proven to be highly effective in treating Parkinson’s disease and newer drugs make this form of treatment even more promising.

Most drugs available for the treatment of Parkinson’s disease work to imitate the effect of dopamine in the brain. That is because low dopamine levels in the brain have been linked to Parkinson’s disease. These drugs are made to “trick” the brain into thinking it is receiving dopamine. The brain’s need for the chemical is then reduced. These drugs have few side effects – the most common are swelling and increased sexual drive (this could become a problem for the caregiver). If a patient has one or more of these side effects, the physician usually will try another drug.

Surgical options are also available for patients who do not respond well to drug therapy.

There is a broad range of therapy available for this disease, and research and development work continues. Caregivers have every reason to be hopeful and confident that an effective treatment will be available for their patient.

Caregivers need help too.

Providing 24-hour care for a patient suffering from any disease is a major responsibility. Caregivers must realize that they may feel anger, withdraw or depression from the pressure of such responsibilities.

Caregivers should be on guard and watchful for these symptoms in themselves. It is better to take steps to prevent them than let such symptoms affect their ability to care for the patient.

Caregivers need to make every effort to maintain a well-rounded, balanced schedule of social activities. And by all means, don’t be shy about getting additional help in the house to assist with the caregiving.

The most effective caregiver is well informed, prepared and asks for help and support from all resources that are available!

We have provided links to a wide variety of support groups and educational web sites. In addition, your local “County Office of Aging,” and even local religious groups, may be excellent sources of information, support and supplies.

Also, be sure that important documents such as a will, living will and emergency plans for children are updated and in place to your satisfaction.

See what caregivers and patients have to say about the disease and caregiving — Click Here