There was a training program called TULIPS, designed for professional caregivers (such as nurses in nursing homes) who have clients with Parkinson’s Disease. The program is being revised and is no longer available. But we located an old copy.
Brain Support Network volunteer Denise Dagan recently looked over the TULIPS training for “Managing Advanced Parkinson’s Disease” as the diseases in our community are more similar to advanced PD than early or middle-stage PD.
Here are Denise’s notes from the training. Interspersed in brackets are a few comments from Denise, whose father had Lewy Body Dementia.
Denise’s Notes from
Managing Advanced Parkinson’s Disease
TULIPS: training for better Parkinson’s care
Struthers Parkinson’s Center, Minneapolis, MN
Section 1 – Planning Ahead
Create back up plans for what to do:
– if you have an urgent errand
– if you need home maintenance or repair
– if you become ill
– if your loved one becomes ill
– if you both become ill.
[This is the question we posed to my Mom, “What if you wake up with the flu and can’t help Dad with anything, even for just one day?” She didn’t have an answer and that allowed us to move forward with hiring in-home care.]
Section 2 – Acknowledging Changing Roles and Relationships
– Maintain intimacy through touch, conversation, shared times and humor.
– When communicating becomes difficult for both speaker and listener, set up hand signals or other gestures to reply to yes/no questions.
– A speech-language pathologist may provide additional suggestions to enhance communication.
Section 3 – Deciding Where to Live
Remaining in Your Own Home:
– Will a ramp be needed for outside access?
– Do floor surfaces easily accommodate wheelchair transport?
– Are the bedroom and bathroom accessible?
[Have an occupational therapist perform a home assessment and make suggestions about accessibility and safety.]
– Attractive bins or baskets will disguise needed equipment while maintaining appealing surroundings.
Moving to a New Home:
– Consider both present and potential needs, including help with meal preparation, medication set-up, personal care and/or complex medical management. Find out how much these services cost [either in-home or if you are researching a facility].
– Investigate facilities, comparing services and prices, available staffing assistance and experience with caring for those with Parkinson’s disease.
Creating Comfortable Surroundings:
Wherever you live your surroundings should be comfortable, functional, and relaxing. Nobody wants to spend time in an institution
– Consider a pleasing fragrance.
– Include meaningful objects, mementos, achievements, photographs or family, friends, vacations, pets, etc.
– Bring nature indoors for those who cannot go outdoors frequently. Plant a garden or hang a bird feeder where they are easily viewed.
– Play favorite music to set a mood and facilitate conversation.
– Use soft fabrics and blankets to appeal to the touch.
– Connect through a warm soak, followed by a hand and/or foot massage.
Section 4 – Caregiver Self Care
– Learn proper techniques to prevent injury during caregiving responsibilities. [Especially to protect your back.]
– Write dates you need respite support on a calendar and ask those who offer help to “sign up” for one or more of these dates.
– Learn about respite care options through family, friends, neighbors, friends, faith communities or other community services. Investigate adult day programs, respite volunteer programs, or facilities that offer short-term stays in the event of caregiver vacation, illness, or need for time away. Network with other caregivers or visit with a local social worker or senior services agency to identify available options.
– Avoid negative people and unrealistic expectations.
Section 5 – Assisting Movement
Someone with Parkinson’s disease may require assistance at one time of day, while being independent another time. Offer assistance as needed. Consider making an appointment with a physical or occupational therapist who can offer proper training for caregivers, suggest appropriate aids and instructions for use, and make referrals to additional community resources.
– Before starting to move, a gentle rocking or rolling motion will help stiff muscles to relax. Avoid quick, pulling, or jerking movements.
– Offer hand-over-hand assistance as needed.
– A transfer belt around the waist provides the caregiver with a firm grasp and added stability when assisting with walking or transfers.
– Coordinate efforts by arranging a signal (i.e. “1-2-3 stand”) when working together. Count slowly and give adequate time to respond.
– Transfer “pivot discs” may be appropriate for those who have difficulty turning feet when moving from chair to bed or toilet. Visit a therapist for instruction on proper use.
– Mechanical lifts may be used for those unable to bear their own weight during transfers.
– Limit conversations when moving to allow greater focus on walking or transfers.
– Use color contrast when choosing equipment (i.e. install a white grab bar on a dark colored wall) for potential vision changes.
Section 6 – Providing Mealtime Assistance
– Avoid tough, dry, or crumbly textures.
– Small, more frequent meals may be better for those with low blood pressure, fatigue, or who note feeling full quickly.
– Alternate between liquids and solids at mealtime.
– Allow adequate time for chewing and swallowing.
– Offer ice chips or lemon ice to aid swallowing.
– Give medications in applesauce to make swallowing pills easier.
– Do not feed, offer fluids or give medications when someone is lying down.
– Raise height of tray or plate to make eating easier, especially for those with neck immobility or vision changes.
– Consult a speech-language pathologist if coughing, choking, or recurrent lung infections occur.
– Feeding tubes may be considered for those with severe problems, but should be carefully considered with the individual, family and the health care team.
Section 7 – Dental Care
– Use an antiseptic mouthwash twice daily to decrease plaque and kill bacteria.
– Use an electric toothbrush and toothpaste.
– Dairy products and sugary foods may increase drooling.
Section 8 – Toileting
– Stay well hydrated.
– Allow plenty of time to use the toilet.
– Work with a physical or occupational therapist to learn ways to help the person with Parkinson’s transfer to the toilet and avoid injury.
– A pad placed inside an incontinence brief adds extra absorbency.
– Use disposable or washable pads on the bed to protect the mattress and reduce laundry.
– Use a urinal (available for both men and women) bedpan, or bedside commode to reduce bathroom trips at night.
– Condom catheters are a user-friendly solution for urgency, frequency, and incontinence.
– Indwelling catheters may be placed in those with more significant bladder problems. Ask your doctor.
Try these steps and contact your nurse or doctor if bowel movements do not occur at least every 3 days.
– Increase fiber and fluids.
– Try more regular activity (position changes and/or exercise).
– Use over-the-counter stool softeners, as needed.
Section 9 – Skin Care
As persons with Parkinson’s disease age, their skin may become fragile and prone to break down. Suggestions to help prevent pressure sores and infection include:
– Change position every two hours.
– Massage lotion into the skin to prevent dryness and improve circulation.
– Be observant for redness, blisters, or open sores. Report skin changes promptly to prevent a more serious problem.
– Plastic coating and tapes from incontinence products can cause irritation. Avoid contact with the skin.
– Use heel/elbow protectors for added skin protection.
– If in a wheelchair, obtain a cushion to lessen the risk of getting a pressure sore.
– Make sure skin folds are thoroughly washed and dried.
– Consider a sponge bath for those with limited mobility or unsafe transfers to the tub or shower.
– A home health aide can offer bathing assistance if this task becomes too difficult or time consuming for a family caregiver.
When in bed:
– Change clothing or bed linens more frequently if increased sweating is a problem
– Use an “egg crate” or alternating pressure mattress to help prevent skin pressure when in bed.
Section 10 – If Someone Falls
– Work with a physical therapist to learn safe and proper techniques to help someone get up from a fall.
– Do not hurry to get up. First, check for injuries. Some people need to rest before attempting to rise.
– If the person who fell is unable to get up, make him/her as comfortable as possible until help arrives.
– If able, scoot to a heavy piece of stable furniture, then move onto hands and knees before attempting to get up.
– Consider using knee or elbow [or head?] protectors for those having frequent falls.
– Consider special clothing with added cushion over hip joints.
– Create a “back up” plan for assistance with rising. Do you have a cell phone, medical alert system, family member or neighbor?
Section 11 – Thinking changes
Not all people with Parkinson’s disease develop severe thinking changes, which can include increased forgetfulness, confusion, compulsive behaviors, paranoia, anxiety, or personality changes. Promptly report any new or sudden changes in thinking or behavior to your health care team. Medications may need adjusting or medications may be prescribed for depression, declining memory, or hallucinations. Seek counseling, if needed.
Thinking changes can worsen when someone is ill, hospitalized, or in an unfamiliar environment.
Provide adequate time to allow response to questions or comments to maintain dignity and self-esteem.
What to Say:
– Provide simple 1-step instructions. Too many words can be overwhelming.
– Repeat instructions for those with memory problems.
– Avoid confrontation. Telling someone who is confused or having hallucinations that they are wrong usually makes them more upset.
– Speak in reassuring tones and try to divert their attention from the situation.
– Avoid using negative humor or sarcastic remarks which may be misinterpreted.
Things to Do:
– Set up clothing or toiletries in order of use.
– Establish a daily routine and stick to is as much as possible. Use a calendar or white board to provide reminders.
– Avoid multiple conversations or activities at the same time. This may add to confusion and anxiety.
– Speak face-to-face.
– Be tolerant of remarks or actions that may be uncharacteristic of previous personality of temperament.
– Reduce unrealistic expectations.
– Register for the “Safe Return” program sponsored by the Alzheimer’s Association (alz.org), which identifies those who become lost or separated from their caregivers.
Section 12 – Ideas and Suggestions for Activities
– Game shows, sharing a crossword puzzle, watching a nature or history program on TV.
– Provide videos or books on art, travel, architecture, or animals. For those with vision changes, try books on tape or CD.
– Find ways in which a person can participate in familiar activities. (i.e. give a hobby fisherman a tackle box to organize – remove the hooks, or have a home maker fold laundry or wipe counters)
– Petting, grooming, or playing with pets provides companionship, regular touch, physical and mental stimulation.
– Invite visits from relatives, friends, and neighbors.
– Attend an adult day program.
– Maintain connections with your faith community, read daily devotions or other meaningful passages, and speak with clergy.
– Set up a “relaxation station” with headphones to play nature sounds or soft music to decrease restlessness or anxiety.
– Schedule rest periods throughout the day, but avoid excessive daytime sleeping.
– Exercise! If following instructions is not possible, throw a ball or play balloon volleyball.
– Assist with a few extra arm & leg motions while dressing, bathing or other cares for more exercise.
Section 13 – Choosing a Wheelchair
Schedule an appointment with an occupational or physical therapist to find out which chair is best for individual needs. Visit a medical supply store prior to purchase. Check with your insurance to find out what type of chair is covered.
– A lightweight chair is easier to lift in/out of a car.
– A reclining chair back is helpful for those with posture changes or low blood pressure, or who needs to rest during the day.
– Footrests are important, especially when a caregiver is pushing the chair.
– Elevating leg rests may be more comfortable.
– Desk-style arms may allow easier positioning at a table for eating and other activities.
– Bolsters may improve sitting posture in the chair.
– Obtain a cushion that offers a firm sitting base and skin protection.
– ALWAYS lock wheelchair brakes prior to transfers. Clearly mark brake levers with colored tape for easier use.
Section 14 – Pain Control
– Report pain promptly to the health care team. Medication adjustment may help reduce excessive stiffness and/or muscle cramping.
– Typically, over-the-counter pain relievers can be safely used with Parkinson medications. Confirm with your physician.
– Warm packs may aid in pain control. Avoid electric heating pads, which may burn. Microwaveable or air-activated heat wraps are safer.
– Pain from falls or other accidents may be better controlled with ice packs to reduce swelling.
– Massage can aid circulation and decrease soreness.
– Use cushions as needed for comfort and support. Avoid using too many pillows, which contribute to a flexed posture.
– Increased wandering, agitation, or unexplained crying in those with dementia can be a sign of pain.
– Visit a physical therapist for specific pain evaluation and additional recommendations.
Section 15 – Approaching End of Life
Do Not Resuscitate (DNR):
There should be a frank and honest discussion about what should be done in the event of a life-threatening emergency. 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 must be shown to emergency personnel. A “living will” alone is often not enough to ensure these wishes are carried out.
Choosing Hospice Care:
Hospice is available to anyone with limited life expectancy and emphasizes comfort care rather than aggressive treatment. Quality, rather than quantity, of life is stressed for both care receiver and care giver. Emotional, spiritual, and practical support is provided based on individual needs. Professional medical care continues throughout.
– A physician referral is required.
– Check to see if hospice is covered by your insurance. [Hospice is covered by Medicare.]
– There are many hospice services in urban areas to choose from.
[Prior to hospice care, ask your doctor about palliative care. Palliative care focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Medicare Part B may cover some palliative care treatments and medications, including doctors visits, nurse practitioners, and social workers.]