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Caring for someone with Parkinson's at home

Parkinson's care at home for Atlanta families, covering symptoms, freezing and falls, medication timing, swallowing, home setup, exercise and local help.

By the Tale Circle Care team · · 8 min read

About 1.1 million people in the U.S. live with Parkinson's disease, and the Parkinson's Foundation estimates around 90,000 more are diagnosed each year. Most of them live at home, with a spouse or adult child doing much of the day-to-day support. This guide covers what Parkinson's care at home involves, from medication timing and freezing to swallowing, exercise and the Atlanta resources worth knowing.

What does Parkinson's look like day to day?

Parkinson's is a progressive brain disorder that damages the nerve cells that make dopamine, a chemical the brain uses to control movement. It changes slowly, and no two people have quite the same mix of symptoms.

Movement (motor) symptoms

  • Tremor, often a "pill rolling" shake in the hands at rest
  • Slowness, so getting dressed or crossing a room takes much longer
  • Stiffness in the arms, legs or trunk
  • Balance problems, which raise the risk of falls

Non-movement (non-motor) symptoms

The Parkinson's Foundation notes that many people are more affected by non-motor symptoms than by the tremor and stiffness people usually picture. These can include:

  • Depression and anxiety
  • Sleep problems
  • Constipation
  • Loss of smell
  • Thinking and memory changes
  • Hallucinations, which 20 to 40% of people with Parkinson's report at some point
  • Dizziness when standing, from a drop in blood pressure

Some days will be better than others, and some hours of the day better than others. Much of that comes down to medication timing.

Why does medication timing matter so much in Parkinson's?

Levodopa and other Parkinson's medications replace or mimic dopamine. As the disease progresses, each dose may not last as long. When it wears off, symptoms come back. This is called "off" time. It can creep in gradually or hit suddenly, like a switch.

The Parkinson's Foundation describes several things that help:

  • Doses on schedule. Timers or phone alarms keep doses consistent through the day.
  • Food timing. Levodopa may work better taken 30 to 60 minutes before a meal or about an hour after. Ask their doctor whether this applies.
  • A symptom diary. Writing down when doses were taken and when symptoms returned helps the doctor adjust the plan.
  • Planning around "on" time. Schedule showers, outings and exercise for when medication is working best.

Never start, stop or change a dose without the doctor. The Foundation also advises checking with the Parkinson's doctor before giving anything new, including over-the-counter medicines, since some can interact badly with Parkinson's drugs.

If your loved one goes into the hospital, the Foundation suggests bringing its hospital safety guide and a written medication schedule, so the hospital team knows exactly when each dose is due.

What is freezing, and how can you help?

Freezing of gait is a sudden, temporary inability to move, as if the feet are glued to the floor. It often happens when medication is wearing off. Common triggers include standing up to walk, passing through doorways, turning, changing from one floor surface to another, and stress or trying to do two things at once.

The Parkinson's Foundation suggests techniques the person can use:

  • March in place or take a high, exaggerated step.
  • Shift weight from one leg to the other, then step.
  • Walk to music, or hum or count a rhythm.
  • Aim to step over a line or a spot on the floor.
  • Try "stop, sigh, shift, step." Stop, take an audible breath, rock side to side, then take one big step.

If you're helping, stay calm and give it a few seconds. Never pull or push someone who is frozen, since that can cause a fall. You can put your foot crosswise in front of theirs as a target to step over, or gently rock them side to side. If freezing is frequent, ask their doctor about a physical therapy referral.

How do you prevent falls with Parkinson's?

About 38% of people with Parkinson's fall each year, according to the Parkinson's Foundation, and freezing makes falls more likely. Dizziness on standing adds to the risk. The Foundation's advice for that includes getting up slowly, drinking plenty of fluids and sitting back down right away (even on the floor) if they feel faint.

The bathroom is where most falls happen. Useful home changes include:

  • Grab bars by the toilet and in the shower, and a raised toilet seat
  • Clear walkways, with loose rugs and clutter removed
  • Bright lighting, plus night lights between the bed and bathroom
  • A bed at a height that makes standing up easier
  • Handrails on both sides of stairs, with brightly colored tape on step edges
  • Everyday kitchen items stored within easy reach, and no ladders or step stools

An occupational therapist can do a home safety evaluation tailored to your loved one. For a fuller checklist, see our guide to preventing falls at home.

What are the signs of swallowing problems in Parkinson's?

Parkinson's can weaken the muscles used to chew and swallow. Watch for:

  • Coughing or choking during meals
  • Food that feels stuck in the throat
  • Drooling, or food collecting along the gums
  • Avoiding drinks, or unexplained weight loss
  • Heartburn

If you notice any of these, ask their neurologist for a referral to a speech-language pathologist. They can test swallowing and recommend changes, such as thicker liquids, softer foods or specific exercises. At home, keep meals calm and free of distractions, help them sit upright and serve small bites and sips. Don't change food textures or thicken drinks on your own; follow the plan the speech-language pathologist gives you.

Does exercise help Parkinson's?

Yes. The Parkinson's Foundation reports that people who exercise at least 2.5 hours a week, starting earlier in the disease, have a slower decline in quality of life. A good routine covers four areas: aerobic activity, strength, balance and agility, and flexibility.

Before starting, the Foundation recommends an evaluation by a physical therapist who specializes in Parkinson's. Exercise also helps with constipation, one of the most common non-motor symptoms.

When should you call the doctor or 911?

The Parkinson's Foundation says sudden changes are usually a sign of one of two things: an infection or a reaction to a medication. Urinary tract infections and pneumonia are the most common causes of sudden confusion. Call their Parkinson's doctor right away for sudden confusion, new hallucinations or a sudden jump in symptoms.

Call their doctor too for new falls, coughing or choking with meals, weight loss or worsening dizziness. Call 911 for a serious fall or injury, choking that doesn't clear, trouble breathing, or signs of a stroke.

Georgia and Atlanta Parkinson's resources

  • Emory Healthcare's Movement Disorders program in Atlanta is a designated Parkinson's Foundation Center of Excellence. It offers a comprehensive care clinic, physical, occupational and speech therapy (including SPEAK OUT! for voice and swallowing) and surgical options such as deep brain stimulation.
  • Parkinson's Foundation Georgia Chapter serves people with Parkinson's, care partners and families across the state.
  • Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) can help you find specialists, therapists and exercise classes near you.
  • Empowerline, the Atlanta Regional Commission's aging and disability resource line, connects metro Atlanta families with respite help and caregiver support at (404) 463-3333.

Some people with Parkinson's develop dementia later on. If thinking and memory changes are part of your picture, our guide to dementia care at home covers communication, routines and safety.

How in-home care helps with Parkinson's

Parkinson's makes ordinary parts of the day slower and riskier, and that's where an in-home caregiver helps most. At Tale Circle Care, caregivers give medication reminders on the schedule the doctor set and note any missed doses. They give standby support while your loved one walks with a cane or walker, help with getting up from chairs and bed within their training, and stay close during bathing and dressing to lower the risk of a fall. They also prepare meals that follow the dietary instructions in the care plan, encourage drinks, keep walkways clear, drive to appointments and therapy sessions, and give a spouse or adult child regular time off through respite.

Caregivers don't give medication, change doses or do clinical tasks. They do notice changes in balance, eating or mood and tell you. When care calls for a nurse, we can arrange a licensed one. We serve families across metro Atlanta, including Sandy Springs and Buckhead, Johns Creek and Alpharetta and Griffin. To talk through what might help, call (346) 278-3018. If you're comparing options, see home care vs. assisted living vs. home health in Georgia.

Common questions

Can a caregiver give Parkinson's medication?

Our caregivers remind your loved one when it's time and help them get to their medication containers. They don't hand out doses or change the schedule. That stays with your loved one, the family and their doctor.

What does "off" time feel like?

Symptoms like slowness, stiffness, tremor or freezing return as a dose wears off. Some people feel it coming on gradually, others feel it switch off quickly. Keeping a diary helps the doctor adjust the plan.

Why does my parent freeze in doorways?

Doorways, turns and tight spaces are common freezing triggers. Clearing paths and using a visual cue, like a line of tape to step over, can help. A physical therapist can teach strategies that suit them.

Is Parkinson's the same as dementia?

No. Parkinson's is mainly a movement disorder, though thinking and memory changes can develop over time. Tell their doctor about any changes you notice.

Sources

This guide is general information for families, not medical advice. Ask the person's doctor about their care, and call 911 in an emergency.

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