Caring for a Parent With Parkinson's

Understanding the condition

• Movement symptoms: tremor at rest, slowness (bradykinesia), stiffness, a stooped posture, small steps, difficulty turning and starting to walk, freezing (feet seem stuck to the floor), reduced blinking, soft speech and difficulty swallowing in later stages.
• Non-movement symptoms: constipation, bladder urgency, drooling, sleep problems and vivid dreams, daytime sleepiness, low blood pressure on standing, loss of smell, pain, anxiety, depression, apathy, slowed thinking and, in some people, hallucinations or confusion, especially with illness or medicine changes.
• "On" and "off" periods: when medicines are working the person moves more easily ("on"); as they wear off or in the later years of disease, symptoms return ("off"). Good days and bad days vary. Stress, tiredness, infection and missed doses worsen symptoms.
• It progresses at different speeds. Many people live for many years with support.

See do-it-yourself guide to better living with parkinsons disease and living with parkinsons: defer the advancement.

Medicines: timing is everything

• On time, every time. Many Parkinson medicines work only if taken at set times; even delays of 30 to 60 minutes can bring stiffness, freezing or falls. Set alarms and use a clearly labelled organiser; see pill organiser guide and medicine reminders for forgetful parents.
• Follow the instructions about food, such as taking certain medicines before meals or separating them from high-protein meals. Ask the doctor and pharmacist.
• Never stop suddenly or change doses. Abrupt stopping of Parkinson medicines can cause a serious reaction. If your parent is vomiting, cannot swallow or is admitted to hospital, call the doctor the same day to arrange continuation.
• In hospital, carry the exact medicine list and timing, and insist that doses are given on time; hospitals can delay. See emergency bag for a hospital visit.
• Watch for side effects: dizziness, nausea, sleepiness, hallucinations, compulsive behaviours (gambling, shopping, overeating), uncontrolled movements. Report them; do not adjust yourself.
• Check new medicines with the neurologist, since some common medicines for nausea, mental health or other conditions can worsen Parkinson symptoms.
• Keep a symptom diary of "on" and "off" times, tremor, sleep, falls and mood to help the doctor; see care diary and handover notes.

See giving medicines safely at home.

Moving and staying active

Exercise is one of the most valuable things for Parkinson disease.

• Encourage regular, safe activity: walking, stretching, chair or floor exercises, dance, tai chi, cycling, singing and speech exercises, with the doctor's approval. Physiotherapists experienced in Parkinson disease can teach big, deliberate movements and balance work; see chair exercises for seniors and balance exercises for seniors.
• Time activity for the "on" period, when medicines work best.
• Use cues to overcome freezing: counting out loud, stepping over a line or a laser line, marching to a beat or music, shifting weight side to side before stepping, thinking "big steps". Do not pull or push a frozen person; wait, cue gently and let them restart. See parkinsons freezing and falls.
• Turning: teach to make a wide arc rather than pivoting on the spot.
• Walking aids: a stick or wheeled walker may help balance, but the physiotherapist should advise, since some aids worsen freezing or posture; see rollator buying guide.
• Rise and transfer safely: sit-to-stand technique, a firm chair with arms, a raised toilet seat, rails; see how to lift and transfer safely and bed transfer techniques. Get hands-on training from a physiotherapist or nurse.
• Turning in bed gets hard; satin sheets, a bed rail used on advice and a firm mattress can help; see bed rails guide.

Preventing falls

Falls are a major risk, with freezing, poor balance, low blood pressure and rushing.

• Clear floors of rugs, cables and clutter; widen paths; keep furniture steady.
• Good lighting day and night; motion night lights to the toilet; see motion night lights for seniors.
• Supportive footwear with non-slip soles.
• Grab bars, shower chair and raised toilet seat; see bathroom safety for parkinsons.
• Rise slowly and sit on the edge of the bed first; see dizziness and low blood pressure when standing.
• Avoid carrying things while walking.
• Take time; do not rush through doorways or to the toilet.
• Review medicines and blood pressure with the doctor.
• Physiotherapy for balance and strength.

See falls risk assessment at home and what to do after a fall.

Daily living

• Dressing: choose loose clothes with elastic waists, large buttons or Velcro; sit to dress; a dressing aid may help; see daily living aids starter guide.
• Eating: weighted or easy-grip cutlery, a plate guard, a non-slip mat and a cup with handles for tremor; see eating with tremor or weak grip and easy grip cutlery guide. Allow time. Weight loss is common.
• Handwriting and phone use: larger pens, voice assistants; see phone and remote aids for arthritis for similar adaptations.
• Bathing and toileting: safe seating, grab bars, a handheld shower, warm water; dignity matters; see bathing safely with a shower chair.
• Voice: soft speech is common. Speech therapy programmes can help; encourage "loud" practice, reading aloud and singing. Give time for conversation.
• Time and patience: tasks take longer; schedule extra time and avoid rushing, which worsens freezing and tremor.

Swallowing, constipation and drooling

• Swallowing problems can appear as the disease advances. Warning signs include coughing with meals, a wet voice, long meal times and repeated chest infections. Ask for a swallowing assessment; sit upright, small mouthfuls, follow textures advised; see swallowing problems and dysphagia and aspiration pneumonia prevention.
• Constipation: fluids, fibre, movement and routines; ask the doctor before using laxatives; see bowel incontinence and constipation.
• Drooling: ask the doctor about treatments and swallowing therapy.
• Bladder urgency and night waking: plan toilet access; see night-time toilet trips and falls.

Sleep, mood and thinking

• Sleep: vivid dreams, shouting or acting out dreams, restless legs and night stiffness are common. Make the bedroom safe; tell the doctor. See insomnia in older adults.
• Depression and anxiety: very common and treatable; do not dismiss them as "part of it"; see depression in older adults and anxiety in older adults.
• Apathy: a lack of drive is not laziness. Gentle prompts and structure help.
• Thinking and memory: slowing, trouble multitasking and, in some people, dementia. Keep routines and use notes; see caring for a parent with dementia at home.
• Hallucinations or delusions: report to the doctor the same day; they can come from medicines, infection or dehydration. Stay calm, do not argue and keep the environment safe; see delirium in older adults.
• Social life: keep contact, hobbies and support groups; see loneliness and isolation in older adults.

Planning ahead

Discuss future care, preferences and legal arrangements early, while your parent can take part; see advance care planning in india and legal basics: wills, nominations and power of attorney. Arrange a plan for illness and hospital stays.

Looking after yourself

Carers may feel exhausted by constant vigilance and by the unpredictability of good and bad hours. Share tasks, build in breaks and seek support groups; see caregiver burnout signs and prevention and respite care: how to take a break. For mental health support, a national tele-mental-health helpline (Tele-MANAS, 14416) has been announced; check the current number and service.

When to call for help

Call the neurologist or doctor the same day for sudden worsening, new hallucinations or confusion, repeated falls, difficulty swallowing, missed doses because of vomiting, a new rigid or very slow state, high fever or signs of infection. Call 112 for a fall with head injury or suspected fracture, choking that does not clear, chest pain, severe breathlessness, signs of stroke, collapse or inability to move.

When to ask a professional

A neurologist or geriatrician manages medicines. A physiotherapist teaches movement and balance. An occupational therapist advises on the home and tasks. A speech and language therapist helps with voice and swallowing. A dietician supports nutrition. A counsellor helps with mood. For senior citizens' information and support, Elderline 14567 is a helpline; check current availability. In an emergency, call 112.