Charting Your Course
Today's Caregiver -
Caring for a loved one with Parkinson’s disease at home can be like sailing a ship through uncharted waters. Currents, wind shifts and changing weather patterns all influence the ship’s course on a daily basis. The effects of Parkinson’s disease also present an unpredictable course and caregivers must continually seek solutions and a positive direction for the care they provide.
Barbara has been caring for her husband for over 10 years. He was diagnosed with Parkinson’s disease and she has remained steadfast with his care at home. Through the years, she has been creative in developing practical ideas that save time, require less energy and reduce stress. Most importantly, employment of these concepts has enabled her to maintain the independence and dignity of her husband.
In the early stages of her husband’s disease, Barbara made an appointment for occupational and physical therapy consultations along with a home environment assessment. This decision helped her to begin planning for the physical care and necessary home modifications to support her husband’s needs. She offers these additional ideas for caregivers to customize their caregiving procedures as needs arise:
Wheelchairs—consider two separate chairs—one to use for indoor mobility and at the kitchen table (can be locked in place) and one to use for outings to the mall or family gatherings.
Walker—the best investment has been a four-wheeled walker with balloon tires, hand brakes and a padded seat. It glides over the ground and uneven surfaces and was paid for by Medicare and a co-insurance policy.
Recliner—add a wooden base to the chair to raise the height six to 10 inches.
This makes it easier for the care receiver to get in and out of the chair alone.
Electric lift chairs are another option and may be partially paid for by Medicare.
Install grab bars in several wall locations and a safety handle on the edge of the bathtub. Be sure to drill the bars into a wall stud for maximum hold and safety.
Remove the toilet seat and place a commode frame with arm rests over the toilet or purchase an elevated toilet seat with raised arms.
For sanitary purposes, keep flushable wet wipes available for use after toileting. Wipes can also be used to clean bathroom fixtures.
Add a non-skid bath mat, a bath bench and a handheld shower head to allow the care receiver to assist with their own shower.
For grooming, use an electric razor and an electric toothbrush to encourage self-care.
Use incontinent pads and adult briefs in layers as needed for full protection against wetting through.
Clothes or furniture:
Washable sheet protectors and chair pads can be used to save on constant laundering. For full protection, layer several pads on the bed or chair.
Use a Swiffer-type dry and wet mop on the floors for easier cleaning.
Do not use throw rugs, but if the floor surface is slippery, use a short-napped rug with a rubber backing.
Purchase a whistle from a hardware store, tie it onto a long piece of elastic and place it around the care receiver’s neck. This can be used to call for help, especially if the caregiver has a hearing deficit. Place another whistle near the bed or toilet if needed.
Personal Emergency Response System (PERS) can be rented monthly to summon help when the caregiver is out of the home.
Alarm systems can be purchased from medical supply companies and installed at exit doors and on wheelchairs to prevent wandering or falling.
Transfer or restraining belts can be used to keep the care receiver secure in the chair when the caregiver has to leave the room. It can also be used to assist in safely helping the care receiver out of bed or a chair.
Canvas aprons can be purchased at craft stores. Cut the ties off and replace with elastic on the top to enable the care receiver to put it on without help. Vinyl or quilted bibs/aprons can also be purchased from medical supply companies. Place the bottom half of the apron underneath the plate for neater mealtimes.
Use cups or glasses with lids and straw holes to prevent spilling. A two-ha ndled cup with a spouted lid can also be kept by the bedside.
If the care receiver has tremors, buy shallow soup bowls and edge guards for plates to keep the food contained.
Purchase utensils with weighted, built-up or angled handles to help hands remain steady.
Car seats made of leather are easier to access and to clean.
Consider purchasing a swivel seat cushion to ease car transfers.
Purchase a handicapped vehicle parking permit ($5.00) through the driver’s license bureau and have it authorized by the physician. Use the permit at any handicapped parking zone or at any meter in the city.
Pack a car tote bag. Include a package of wet wipes, bibs, a change of clothing, incontinent pads, plastic garbage bags, and water.
Eat in the car and park near a scenic area to enjoy the meal and the view if dining in a restaurant becomes too difficult.
Consider the need for an electric hospital bed with a trapeze for movement and increased independence. This can be rented monthly through Medicare and a co-insurance policy.
Try nylon or silk pajamas for ease in turning in bed.Use a bed guardrail for safety and support.
Dressing for Success:
Velcro Hush Puppy shoes are easier for the care receiver to put on and take off. Turn a lace-up shoe into a slip-on shoe with elastic shoelaces.
Purchase pull on boots with zippers for winter.
Use a long-handled shoe horn with a spring hinge.
The care receiver will have warmer feet and avoid falling by wearing slipper socks with rubber treads over regular socks. Thin stockings vs. cushioned sole socks are better on carpeted surfaces.
Sport pants and elastic waistbands ease dressing woes for the caregiver and care receiver.
Magnifying sheets, magnifying glasses, large wall clocks, talking watches and natural spectrum lamps help those with impaired vision and encourage independence.
Review photo albums and old greeting cards.
Read the comics.
Listen to music and books on tape.
Enjoy walks in the park when able.
Create a memory box filled with past treasures or items that encourage reminiscence.
Display things around the home that bring joy such as family photos, children’s art work, and holiday decorations. This display also helps with time or seasonal orientation.
Consider attending a Parkinson’s disease support group together.
As one can see, revising care procedures and modifying your home can promote successful caregiving. In addition, these ideas will uphold the dignity and independence of the care receiver. Learn from others who have walked in your shoes and set your sails for a new direction in providing care for a loved one with Parkinson’s disease.
Kristine Dwyer is a Caregiver Consultant and Licensed Social Worker with Carlton County Public Health in Cloquet, Minnesota. She is also a past and current caregiver for family members. Barbara Churchill has been a caregiver throughout her lifetime and is a mother of seven children. Our hope is that this joint article can reach and positively influence caregivers and care receivers with Parkinson’s disease across the nation.