Parkinson's is making everyday tasks harder

What changes at home with Parkinson's?

Parkinson's changes the pace of a day before it changes anything else. The National Institute of Neurological Disorders and Stroke (NINDS) describes slowed movement that makes washing and dressing take much longer, stiffness, tremor, and balance problems that make falls more likely. Some people "freeze," with feet that feel stuck to the floor, often in doorways or while turning. There are quieter symptoms too: a softer voice, fatigue late in the day, constipation, bathroom trips at night, dizziness on standing up, and for some people changes in thinking and memory.

Families usually notice it in small ways first. Dad stops shaving because it takes too long. Mom, who is his main caregiver, has started helping him out of the recliner several times a day and her back is paying for it. Medication times have become the fixed points everything else is arranged around.

How does a caregiver help day to day?

A caregiver's job is to make the routine easier without taking it over. In practice that looks like:

• Medication timing. We put the neurologist's dose times in the written care plan and give Medication Reminders on that schedule, including opening containers when hands are shaky. Caregivers do not administer medications or change doses.
• Bathing and dressing. We plan showers for the times of day he says he moves best, use the shower chair and grab bars you have, and follow the dressing tools an occupational therapist recommended, such as a button hook or sock aid. See personal care.
• Getting around. Walking alongside through doorways and turns, keeping the walker within reach, and using the cues the physical therapist taught the family for getting unstuck. The Parkinson's Foundation notes that freezing raises the chance of a fall, so we keep hallways clear and lit.
• Meals. If a speech-language pathologist recommended softer foods or smaller bites, we cook and serve meals that way and keep mealtimes unhurried. Coughing or choking at meals is written down and passed on to the family.
• Exercise and voice. Reminders and good company for the home exercise and voice exercises the therapists assigned. The therapy itself comes from the therapists.
• Noticing. New falls, more freezing, missed doses, confusion or seeing things that are not there: we write it down and tell you, so you can call the neurologist.

How do we work with the neurologist and therapists?

The neurologist or movement disorder specialist manages medications. Physical, occupational and speech therapy come through an outpatient clinic, or through a Medicare-certified home health agency when the doctor orders it. We are a non-medical agency and not part of that clinical team, but we can make its plan easier to follow: a log of falls and freezing episodes for the next appointment, a caregiver who accompanies your parent to the visit and takes notes, and a schedule that keeps therapy exercises happening between sessions. Our guide to home care versus home health care explains who does what.

For questions about the disease itself, the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) answers weekdays and can point you to support groups near you.

What does a typical starting plan look like?

• Mornings, three to four hours, lined up with the first doses of the day: shower, dressing, breakfast, a short walk, light housekeeping.
• Late afternoon and evening, when fatigue sets in: dinner, getting ready for bed, a last check of the bathroom path.
• Overnight care when night bathroom trips have become the risky part of the day.
• Regular respite for a spouse who has been doing every transfer alone.

Where this happens in our 16 counties

We see Parkinson's care in split-levels in Lower Paxton Township where the bedroom is half a flight up, in brick twins in Lebanon and Palmyra, and in farmhouses outside Mifflintown and New Bloomfield where the nearest neurologist is an hour's drive. Many families travel to specialist appointments in Hershey, Lancaster or the Lehigh Valley, and a caregiver who comes along means one less day off work for you.

In Dauphin, Cumberland, Lancaster and York counties, schedules are usually easiest to arrange. In Fulton, Huntingdon and Juniata counties we are honest that staffing depends on caregiver availability, and longer or recurring shifts are easier to fill than one-hour visits. Pennsylvanians 60 and older can also ask their county Area Agency on Aging, such as the Dauphin County Area Agency on Aging at (717) 780-6130, about the OPTIONS program. When you are ready, request an in-home consultation.