Issues Related to Advanced Parkinson’s Disease
Living with Parkinson disease is a daily challenge. Taking the time to organize one's affairs and make advance preparations can help to ease the transition into the next phase. Some families find it beneficial to hold family meetings to talk about caregiving roles and plan for the future.
Making sure financial and legal matters are in order also can ensure peace of mind for patients and family members. When changes occur with a PD patient (i.e. medical health, cognitive ability, mental health) it is important that you consult with the neurologist who is following the patient. These changes are important to know about for treatment and quality of life.
Planning for the Future
•Keep a notebook listing medication schedules and daily routines.
•Post emergency numbers in a central location of the house and near all telephones.Include numbers of family and/ or friends that would need to be notified in case of emergency.
•Make sure you understand your insurance benefits and covered services. Learn whatlong-term care coverage options are available.
•Keep important legal and financial documents in one location for safekeeping and easyaccess. A locked, fireproof box or safety deposit box may be best. Share this location with a trusted family member or friend.
•Consider consulting with a social worker or geriatric case manager to learn aboutresources, programs, services, and care options appropriate for both current and future needs.
•Remember: Always feel free to ask questions about things you don't understand!
Advanced Health Care Directives
Advanced Health Care Directives are legal documents that specify patient and family wishes for medical decisions and treatment. These documents vary considerably from state to state. The following are some recommendations to assist you with this process.
•Seek information from a social worker or other reliable source to determine procedures inyour area. They can help you create an advanced directive. It may not be necessary to visit an attorney to create these "living will" documents.
• Create a will that clearly outlines your wishes. Seek legal advice to ensure the document is valid.
• When in doubt, consider consulting with an elder law attorney. These attorneys focus on the special needs of older persons and people with disabilities. Their special expertise is targeted at protecting the autonomy, quality of life, and financial security of seniors as they age.
Friends and Family Help
As friends and relatives offer their help, be ready with a list of errands or tasks that they can do. Here are some additional ways to prepare for the days ahead:
• Create contingency plans in case
o you have an urgent errand;
o you need home maintenance or repair;
o you become ill;
o your loved one becomes ill;
o you both become ill.
Organizing Your Home
Many accidents happen in the home, and Parkinson disease makes it more difficult to maintain a safe home environment. Simple steps can help reduce potential hazards:
• Reorganize and remove clutter. Keep things you use often in a convenient location
• Set up medications on a daily or weekly basis in marked containers
• Remove hazardous items from the living environment. Store extra medications or toxic substances out of sight. Pay special attention to substances that may be mistaken for food items.
• Install a room monitor to allow listening and increase safety when in another room or area of the house.
• Schedule a home evaluation with an occupational or physical therapist for specific recommendations on home safety.
If Someone Falls
Accidents can happen in the best of circumstances. Develop a system to get up in the event of a fall and work with a physical therapist to learn and practice safe and proper techniques. The following are other suggestions for persons with PD and caregivers.
• If on the ground, do not hurry to get up. Make sure there are no injuries. Rest before attempting to rise. If the person who fell is unable to get up, make them as comfortable as possible (pillow, blanket, etc.) until help arrives.
• If able, scoot over to a heavy piece of stable furniture, then move on to hands and knees before attempting to get up.
• Anyone who is experiencing frequent falls needs to be seen by their neurologist
• Special clothing can be purchased with added cushion protection over hip joints.
Talk to a member of your health care team for recommendations.
• Create a "back-up" plan for assistance with rising. Consider keeping a mobile on the person or Lifeline/Med Alert alarm system, or nearby family member or neighbor?
Not all people with Parkinson disease develop thinking changes, but it can be frustrating and frightening for individuals their family members or caregivers coping with these problems. It is important to acknowledge these changes.
Increased forgetfulness, confusion about routine tasks, compulsive behaviors, paranoia, anxiety, or personality changes are examples of thinking changes. Promptly report any new or sudden changes in thinking or behavior to the health care team. Medications may need to be adjusted. In some cases medications may be prescribed for depression, declining memory, frightening hallucinations, behavior or personality changes. Psychologists, social workers or other mental health professionals can provide individual, couple, or family counseling.
• Be aware that thinking changes may worsen when someone is ill, hospitalized, or in an unfamiliar environment.
• Provide adequate time to allow response to questions or comments. It can be very difficult and time-consuming for caregivers to provide extra time and choices, but it is an important aspect of maintaining dignity and self-esteem.
How to Respond
• Provide simple, one step instructions - too many words may be overwhelming.
• Repeat instructions throughout the daily routine for those with significant memory problems
• Avoid confrontation. It is not helpful to tell someone who is confused or having hallucinations that they are wrong, as this usually makes the person more anxious or upset. Speak in reassuring tones and try to divert their attention from the situation.
• Avoid using negative humor or sarcastic remarks, which may be easily misinterpreted
Things to Do
• Set up clothing or toiletries in order of use.
• Establish a daily routine and use a calendar or erasable board to help provide reminders.
• Avoid multiple conversations or activities at the same time, this can create confusion and anxiety.
• Speak face-to-face.
• Try to be tolerant of remarks or actions that may be uncharacteristic of previous personality or temperament.
• Reduce unrealistic expectations. Sometimes our standards of "perfection" must be lowered.
Complaints of pain are more frequently noted in late stage Parkinson disease. Loss of the ability to move without help, frequent falls, or muscle stiffness may all contribute to pain. Pain may also occur with excessive dyskinesia, muscle cramping, or other medical conditions such as arthritis or neuropathy.
If experiencing pain, report pain promptly to your physician and the health care team. Medication adjustments may help reduce excessive stiffness and/ or muscle cramping.
• Typically, over-the-counter pain relievers can be safely used with Parkinson medications.
• Warm packs may aid in providing pain control. Avoid the use of electric heating pads, which may cause burns with prolonged use. Microwaveable or air-activated heat wraps may offer a safer, more sustained heating with less chance for injury.
• Pain from acute injuries sustained during falls or other accidents may be better controlled with the use of ice packs to reduce pain and swelling.
• Massage provided by a caregiver or massage therapist can aid circulation and decrease soreness.
• Use cushions as needed for comfort and support. Avoid the use of too many pillows, which contribute to a flexed posture.
• Be aware that increased wandering, agitation, or unexplained crying in those with dementia may be a signal of pain.
• Visit a physical therapist for specific pain evaluation.
End of Life Decisions
Do Not Resuscitate (DNR)
As one approaches end of life, there should be frank and open discussion about what should be done in the event of a life-threatening emergency. A decision may be made by the patient and family to pursue a Do Not Resuscitate (DNR) order. A DNR order means that no lifesaving techniques will occur in the event of the loss of heartbeat and/ or breathing. These wishes must be declared to a physician, and signed documentation must be completed. A copy of this signed document must be shown to emergency personnel. A "living will" alone is often not enough to ensure these wishes are carried out. There are
resources available to help individuals write a living will, and related legal documents, taking into account each state's laws. One example is www.uslegalforms.com or 1-877-389-0141
Choosing Hospice Care
If advancing Parkinson symptoms cause continued decline and medical complications, hospice support may be added to continue care at home or within a home-like setting. Many people think of hospice services as only for people living with terminal cancer. In fact, hospice services are available to anyone with limited life expectancy, and emphasize comfort care rather than aggressive treatment. Quality, rather than quantity, of life is stressed and hospice services may offer options to reduce caregiver stress and burnout. Emotional, spiritual, and practical support is provided based on individual needs and concerns. Professional medical care continues throughout the hospice process, and many families find these support services invaluable during this difficult time.
Legal and Health Care Professional Advice
National Association of Elder Law Attorneys- www .naela.com
Aging Life Care Association - www.caremanager.org / 1-520-881-8008
Advanced Directives and Palliative Care
California Physician Orders for Life Sustaining Treatment – www.capolst.org / 1-916-489-2222
National Hospice and Palliative Care Organization- www .nhpco.org / 1-703-837-1500
Hospice Association of America- www .hospice-america.org / 1-800-854-3402
Emergency Alert Systems:
Lifeline Systems- www.lifelinesys.com / 1-800-543-3546
Med-Alert- www.1 800medalert.com/ 1-215-699-5766
Protective Clothing for People who Fall Frequently- www .hipsavers.com
Adapted from publication Caring and Coping from Parkinson's Foundation