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:
Mobility Aids/Furniture:
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.
Bathroom Safety:
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.
Incontinence Products:
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.
Floor Safety:
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.
Personal Safety:
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.
Mealtime Options:
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-handled 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 Ideas:
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.
Bedroom Solutions:
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.
Visual Cues:
Magnifying sheets, magnifying
glasses, large wall clocks, talking watches and natural spectrum
lamps help those with impaired vision and encourage independence.
Enriching Activities:
-
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.
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