Parkinson’s Disease: Tips for Caregivers
Caring for a person with Parkinson’s disease has some unique challenges. The symptoms are unpredictable and can vary from day to day. There will be days when your patient or family member can function almost normally, and you have to pull back and allow them to do what they can for themselves. Then they will have other days when they are very dependent and need more of your help. It can be difficult on those days not to feel that the person is being unnecessarily demanding or manipulative. Parkinson’s is also a progressive disease. Sometimes medications and surgery can provide significant relief of symptoms, but they do not stop the progression of the disease.
Depression can also affect people with the disease and their caregivers. It is important to recognize the signs and symptoms of depression so you can seek treatment promptly.
The following tips offer guidance on how you can help your patient or loved one:
- Enlist help from other family members or hire someone to assist you in providing care.
- Learn as much as you can about the disease andthe changes in behavior or symptoms to expect.
- Don’t try to do everything for your patient or loved one. Allow the person time to complete daily activities, such as dressing.
- Set attainable goals. Set up your patient and the family for success rather than disappointment.
- Maintain a schedule as normal as possible. You and your patient will feel more energized and be less likely to feel resentful.
- Have someone you can talk to. Talk openly and honestly with a friends and family members.
- Encourage family members to join a support group.
As Parkinson’s disease progresses, people with the condition realize that their symptoms are interfering with their ability to handle day-to-day chores and activities. Eventually, they cannot handle tasks that require enhanced strength, dexterity, or balance. The transition doesn’t happen overnight, nor does it happen in a predictable course. “It’s day-by-day,” says Linda Pituch, a patient services manager for the Parkinson’s Disease Foundation. “You’re flexing all the time, adjusting day-to-day to what the [patient’s] abilities and limitations are.”
Adapt the home to help maintain independence. Consider the following:
- Keep walking areas free of clutter and small area rugs. Secure all electrical and phone cords.
- Use chairs with firm backs and armrests to support the person’s weight when he gets up or sits down.
- Buy remote controls and a phone with big buttons. Help the person program the phone for easy dialing of frequently used numbers.
- Install large, easily toggled light switches, and purchase lamps that are activated by touch or sound.
- Install a bar beside the bed to provide extra stability for getting in and out of bed.
- Install railings in the bathroom to make it easier to sit on the toilet or step into and out of the shower.
- Attach extended levers to sink and bath fixtures to make them easier to use.
- Provide an electric razor and electric toothbrush to reduce the movements required to shave and brush teeth.
- Reorganize the kitchen so food, utensils, and cookware are within easy reach. Turntables also make supplies more accessible.
Step in, as needed, and help with activities such as:
- Driving. As Parkinson’s disease progresses, patients will probably have to give up driving. Caregivers can take over the task of driving, or they can help maintain independence by assisting with cabs, public transportation, or disability transportation options.
- Shopping. People with Parkinson’s disease often have difficulty walking or picking up objects, which can make a shopping trip difficult. Grocery and department stores often provide motorized carts that the patient may be able to use. Caregivers can help by carrying bags and putting away purchases.
- Home upkeep. The effects of Parkinson’s disease on balance and mobility eventually make tasks like vacuuming or lawn mowing very difficult. Caregivers should try to encourage ongoing physical activity as much as possible, but when it is clear that a task is potentially dangerous, a caregiver should take over.
Get help. Whenever possible, a family member should accompany the person with Parkinson’s to their medical appointments and ask questions of the doctor, nurse and social worker. The areas to assess include your loved one’s needs – both your perceptions and theirs, your home environment, and your own health, emotional state, and other commitments. A family caregiver has to determine how much they can and can’t do themselves and what type of outside support is needed.
Help is available through local and community services. These include neighbors, friends, churches, synagogues, senior centers, Meals on Wheels, and door-to-door vans. Maintaining a relationship and communication with the person with Parkinson’s and the family can be the most challenging and rewarding aspect of caregiving. Dakota Travel Nurse Home Care provides custom care for patients with Parkinson’s disease, through ongoing communication and evaluations of the patient’s and the family’s needs. Call us today at 701.663.5373 for a free in-home consultation.
Additional Information for Parkinson’s Disease Patient Caregivers: