Sarah Matcha, Executive Director
It’s that time of year, families are gathering for the holidays, sharing laughter and happy memories. Things may look different now that a diagnosis of Parkinson’s is involved, but it can still be a fulfilling, enjoyable and memorable experience if approached in the right manner. Planning ahead and being realistic about the changes in physical and cognitive abilities will allow you more freedom to enjoy the experience. The following will focus mostly on the care and management of advancing parkinsonism states and those with related memory impairments, but patients in earlier states of disease may also glean some useful tips from the following.
For families coping with advancing parkinsonism and/or related dementias, the holidays can be bittersweet times filled with stress and frustration. Festivities can agitate, confuse, and over stimulate persons with parkinsonism and cognitive impairment. Meanwhile, caregivers can feel anxious, frustrated, and lonely – leading to stress and depression. Here are a few tips to help yourself as the person with parkinsonism or the caregiver.
Tip 1 - Planning can avoid holiday stress
Individuals who experience the most difficulty with the holiday season are those who have given little thought to the challenges they will encounter. Consider ahead of time what may be expected of you, both socially and emotionally - - as the patient and the caregiver
· Try to plan events and gatherings within the middle part of the day, allowing for down time or nap time, keeping as much as possible to the person’s typical daily schedule.
· Don’t feel obligated to keep up with all holiday traditions or to take on the holiday festivities on your own - Discuss holiday celebrations with relatives and close friends in advance and try to share the preparations.
Tip 2 – Take care of yourself (caregiver)
Remember, the holidays are opportunities to share time with people you love. Try to make these celebrations easy on yourself and with the person with parkinsonism so that you may concentrate on enjoying your time together.
· Set limits by telling family and friends that you intend to control stress this holiday season.
· Maintain a positive mental attitude.
· Prepare to deal with post-holiday letdown. Arrange for in-home care (respite care) so you can enjoy a movie or lunch with a friend and reduce post-holiday stress.
Tip 3 – Prepare the person with parkinsonism and/or memory impairment for the family gathering
Preparing the person with parkinsonism and/or memory impairment for the upcoming holiday events can allow both of you to enjoy the warmth of the season.
· Talk about and show photos of family members and friends who will be visiting in advance.
· Have a “quiet” room in case things get too hectic, loud or if they become overstimulated.
· Play familiar music and serve favorite traditional holiday foods.
· Schedule naps or quiet time, especially if the person usually takes naps or has quiet time.
· Schedule family and friends visit times and keep a list of the visits for the person to anticipate
Tip 4 – Prepare family members and friends
Preparing families and friends with an honest appraisal of the person’s condition can help avoid uncomfortable or harmful situations. Try to encourage open communication while still considering limitations and effects of the disease.
· Familiarize family members and friends with behaviors and condition changes.
· Recommend practical and useful gifts. (See Tip 7)
· Remind family and friends the best way to communicate with a person with parkinsonism and/or dementia. (See Tip 6)
Tip 5 – Involve everyone when selecting activities
Involve everyone in holiday activities including the person with cognitive impairment. Keep in mind that the person with parkinsonism may process and participate at a slower but that they still have much to offer.
· Consider taking walks, icing cookies, telling stories, doing chores, making a memory book or family tree, or keeping a journal. Things out of the previous holiday norm may be activities enjoyed by all if tried.
· To encourage conversation, place magazines, scrapbooks, or photo albums in reach; play music to prompt dancing, stimulation of memories or other kinds of exercise.
· Encourage young family members to participate in simple and familiar activities with the person.
Tip 6 – Communicate with success
Parkinsonism and related memory impairments can diminish a person’s ability to communicate. These tips may help you understand each other. Speech and processing is delayed and the person’s ability to communicate effectively may be impaired.
Be calm and supportive if the person has trouble communicating. If the processing delay takes longer than 20 seconds or longer than their norm, try to prompt them to continue their sentence or thought.
· Speak slowly with a relaxed tone.
· Avoid criticism. For example, when someone forgets a recent conversation, avoid saying, “Don’t you remember?” as this often triggers feelings of anxiety, inadequacy and sometimes anger.
· Address the person by name or familiar term of endearment.
· Be patient, flexible, and do not argue with the person with parkinsonism and related memory impairment as often this will only lead to escalation without resolution
Tip 7 -- Smart gift giving
· Encourage family and friends to give useful, practical gifts for the person such as identification bracelet (available through the National Parkinson’s Foundation and various medical supply companies). Other gifts may include comfortable easy-to-remove clothing, audiotapes of favorite music, videos, and photo albums.
· Advise others not to give gifts such as dangerous tools or instruments, utensils, challenging board games, complicated electronic equipment, or pets. Avoid gifts that are underage for the patient or may be considered demeaning – such as children’s puzzles or overly simplistic games
· If possible, involve the person in giving gifts. For example, someone who once enjoyed cooking may enjoy baking cookies, or buy the gift and allow the person to wrap it.
Tip 8 – Safe environment in the home
Persons with parkinsonism and memory impairments may experience changes in judgment. Typically the executive functions such as complex reasoning, multitasking and advanced judgement are impaired. This change in brain function may lead to confusion, frustration, behavioral change or wandering. Consider these tips to reduce the risk of injury and situations that could be confusing to someone with parkinsonism and related memory impairments.
· Ensure that everyone at the family gathering is aware of effects that overstimulation may have on the person and that their judgement is impaired. This will help all to be aware of the situation but caution against multiple people “baby-sitting”, correcting or questioning behavior.
· Arrange ample space for walking side-by-side, for wheelchairs, and walkers. Keep walking areas clear.
· Consider seating options so the person with parkinsonism and related memory impairments can best focus on conversation and be least distracted.
· Don’t serve alcohol, which may lead to inappropriate behavior or interactions with medications.
· Accommodate changes in vision. Ensure that changes in terrain (carpet to tile etc) are clearly marked and that the person has assistance with mobility if needed.
· Limit access to places where injuries occur, such as a kitchen or stairwell. Check temperature of water and food.
· Create even level of lighting; avoid blinking lights.
· Keep decorations simple; avoid using candies, artificial fruits/vegetables, or other edibles as decorations.
· Supervise in taking medicine.
· Keep emergency phone numbers and a list of medications handy.
Tip 9 -- Travel wisely
· Never leave the person alone.
· Use familiar modes of transportation and avoid peak travel times.
· Keep plans simple and maintain daily routines as much as possible.
· Allow extra time to avoid the stress of rushing.
· Advise service and hospitality staff that you are traveling with someone with parkinsonism and related memory impairments and about the person’s behaviors and special needs.
· Arrange for services, such as wheelchairs, ahead of time.