- Parkinson’s disease symptoms and progression are unpredictable and differ from person to person.
- Prepare for mobility and cognitive/ mood changes.
- Stay in close contact with your loved one’s neurologist for treatment options.
- Do a home safety evaluation and add accessibility features before they are needed.
- As a caregiver, preparation for increasing care needs and costs associated with those needs is critical.
- Include your loved one in all decisions about care and provide support and encouragement
- Access online and local resources for education and support
Top Two Issues of Parkinson’s Disease
If you are a caregiver for a loved one with Parkinson’s disease, you are already involved in taking steps to provide the best care you can. Since Parkinson’s is a progressive neurological disease, the symptoms will likely worsen over time. The tricky and perplexing aspect of Parkinson’s disease is the unpredictability of its progression.
Some people will have a more rapid decline with multiple symptoms, and others will have a slow progression with few symptoms. In general, most people with Parkinson’s have symptoms that fall into two categories:
1. Motor and Mobility Issues
- Stiff muscles
- Difficulty standing
- Muscle rigidity
- Muscle contractions
- Slowed body movement
- Shuffling gait
- Difficulty walking
- Drooling and difficulty swallowing
- Trembling and tremors
- Unintentional writhing
2. Dementia and Emotional Problems
- Difficulty thinking and comprehending
- Trouble sleeping
Dealing with Mobility Issues
Mobility issues start slowly with Parkinson’s and then gradually worsen over time. There are five stages of Parkinson’s, but how quickly or slowly individuals go through these states is variable. Generally, Parkinson’s patients start with a tremor, a change in facial expression, and movement difficulties, usually on one side of the body.
Understanding the progression and symptoms of Parkinson’s can help you both adjust to the changing nature of the disease. These stages don’t necessarily happen clearly and concretely but gradually pass from one stage to another.
The progression of Parkinson’s follows five stages:
- Stage One
During this stage, there might be mild symptoms like a tremor or changes in walking or posture. These symptoms generally do not interfere with daily activities.
- Stage Two
You will notice that symptoms are starting to get worse. Rigidity and movement difficulties make daily tasks more challenging and take more time. Facial expressions start to change.
- Stage Three
Loss of balance and slower movements can lead to increased falls. Your loved one may still be mostly independent, but symptoms significantly impact the ability to dress, bathe and eat. You may need stand-by or hands-on assistance to help with these activities.
- Stage Four
At this point, symptoms are more severe and much more limiting. Your loved one may require a cane or walker to ambulate safely. A person at this stage of Parkinson’s needs assistance with activities of daily living and is unable to live alone.
- Stage Five
This is the most advanced and debilitating stage. It might be impossible to stand or walk due to stiffness, and the person requires a wheelchair or is bedridden. The person may experience hallucinations and delusions and requires round-the-clock care.
Consider Home Modifications
Home modifications will help to keep your loved one safe from falls and maximize their mobility. Some of the characteristics of Parkinson’s are a tendency to lean or stoop forward while walking, dragging and shuffling of feet, decreasing arm swing, and “freezing” in place.
- Remove clutter and throw rugs to help prevent falls: Clear furniture and other objects that impede walking.
- Consider an Emergency Response System (ERS) with fall detection and GPS:If you aren’t home and your loved one falls, you will want the security of knowing that someone will be contacted. ERS typically comes in a pendant or watch-style device. If your loved one needs help, they can push a button, or if they fall, the device will automatically call 911.
- Improve and add lighting in all areas of the home: Especially the bathroom for nighttime trips
- Assess the bathroom: Install grab bars and purchase a shower chair and consider a toilet riser and bars near the commode. Use an occupational therapist for appropriate placement and a licensed contractor for proper installation. If the shower is a tub-style, you may want to consider reconfiguring to a walk-in shower. Stepping into a tub if you have mobility problems can be very dangerous.
NOTE: If your loved one is in a wheelchair or you anticipate needing one, you may need significant structural changes to the home.
- Doorways have to be wide enough and counters low enough for a person in a wheelchair to access.
- You might need a ramp outside the home to eliminate stairs and accommodate a wheelchair.
- Occupational therapists have the skills to help you decide what accessibility changes you will want to make.
Encourage Physical Therapy and Other Appropriate Exercise
Movement is critical for people who have Parkinson’s. There is some evidence that shows “short-term benefits on many PD measurements scales, ranging from disease severity to quality of life.” Some of the benefits of exercise include:
- Maintaining muscle mass for strength and endurance
- Improving energy and helping with sleep
- Easing symptoms of constipation
- Improving balance and flexibility which can help to prevent falls
- Improving mobility which assists with performing activities of daily living like dressing and bathing.
- Reducing stress and depression and improving overall well-being
Check with your loved one’s doctor before introducing any activity. These are possible activities to consider depending on your loved one’s condition:
- Physical therapists can work with your loved one on strength, mobility, and balance, and how to safely transfer. Physical therapy is generally part of home health services that are time-limited but can get your loved one started on the right track. A physician’s order for home health is required.
- Consider Tai Chi, yoga, stationary or recumbent biking, Pilates, swimming, and strength training. All of these activities should have an instructor or someone to stand by to assist with safe movement.
- Don’t forget about other activities like gardening, golfing and dancing
- Engage the services of a speech therapist to assist your loved one with exercises to improve speech and eating.
Dealing with Cognitive and Emotional Concerns
Not every person with Parkinson’s will get dementia, but many do, and depression affects about 50% of people with Parkinson’s.
- Talk openly with your loved one about symptoms of depression and possible treatment options, including psychotherapy and medications. Remote therapy is standard now and eliminates the need to leave home.
- Be prepared to hire in-home help to assist you with caregiving tasks if your loved one has safety issues related to cognitive changes. Duties to consider assigning to a caregiver include making meals, engaging in preferred activities, assisting with bathing and dressing.
- You may need to take over finances and will need the legal authority to do so. Paying bills and managing financial accounts could become your responsibility.
Schedule Regular Visits with the Neurologist
How often you schedule visits with your loved one’s doctor is highly variable, but here are some general guidelines.
- Start with at least every 3-6 month visits that are pre-scheduled
- If symptoms worsen, don’t hesitate to make an unscheduled appointment to find out about any additional treatments to consider
- If you notice cognitive changes, make an appointment with your loved one’s doctor to do some testing. One of the more common and generally accepted tests for cognitive changes in Parkinson’s is the Montreal Cognitive Assessment ( MoCA). By getting testing early, you and your loved one’s doctor can establish a baseline of functioning to compare to as time goes by.
Put Legal and Medical Plans in Place
Take steps that anticipate an increase in caregiver duties and responsibilities. Parkinson-related dementia can cause all of the typical problems you associate with dementia, such as memory lapses, poor judgment, and problem-solving.
- Ensure you have health care and financial power of attorney if you need to assume more responsibility or advocate for your loved one: You need health care power of attorney to obtain medical records, talk to healthcare providers and make decisions if your loved one becomes incapacitated due to dementia. As the symptoms of Parkinson’s worsen, your involvement as a caregiver will increase, and you need the legal authority to assume more responsibility.
- End-of-life planning: Although this is not pleasant, it is an important step to take while your loved one can still voice their preferences. If you wait too long, cognitive impairment may make it challenging to discuss these issues.
- Assume you will need to pay for more care for your loved one than you anticipate: Insurance does not pay for in-home care or assisted living unless a long-term care policy is in place. As a caregiver, you will want to be confident you can provide the level of care your loved one needs if their Parkinson’s symptoms worsen.
- Talk with your loved one about their preferred care if they need more help: Engage your loved one in care conversations to help them feel they have control over their life.
- Are they willing to have in-home care, or would they prefer assisted living?
- At what point do you both decide that you need more help?
Provide Emotional Support
Parkinson’s symptoms can be embarrassing for the person experiencing them. Slowed movement, difficulty speaking and eating, and problems with judgment and memory are common.
- Integrate your loved one into social situations with friends and family members by educating them about the symptoms of Parkinson’s. Isolation can increase feelings of loneliness and depression.
- Be patient and flexible as symptoms change or worsen
- Ask your loved one what you can do to provide more emotional support
Encourage Open Communication
As a caregiver, your relationship with your loved one will change. These changes can be confusing and upsetting. Open communication will pave the way to a more trusting relationship.
- Listen to your loved one’s frustrations and offer non-judgemental support
- Talk about decisions together so that your loved one feels empowered in the process
- If you are a caregiver for a spouse or partner, consider couples counseling if communication has become too difficult
Medications and Treatments for Parkinson’s Disease
There is no cure for Parkinson’s disease but medications and other treatments that can help with symptoms.
- Carbidopa-levodopa: This medication is one of the most effective in treating symptoms of Parkinson’s and comes in infusions, inhalers, and oral administration.
- Dopamine agonists: This class of drugs isn’t considered as effective but lasts longer.
- MAO B inhibitors: These drugs help prevent the breakdown of dopamine. Falling or low levels of dopamine, a neurotransmitter, contribute to the symptoms of Parkinson's disease.
- Catechol O-methyltransferase (COMT) inhibitors: This drug can prolong the effects of levodopa therapy.
- Anticholinergics: This medication is used to control Parkinson’s tremors
- Amantadine: Provides short term relief of the symptoms of early stage Parkinson’s
- Deep brain stimulation: Electrodes are implanted into the brain connected to a generator implanted in your chest. This technology has been found to reduce the symptoms of Parkinson’s.
Additional Caregiving Tips for Someone with Parkinson’s Disease
Due to the changing nature of Parkinson’s disease, predicting your loved one’s needs could be challenging. It is best to assume that symptoms will worsen over time, and preparing for that fact will help keep your loved one safe. Your attitude as a caregiver will significantly influence the well-being of the person you care for.
- Try to stay positive when changes occur.
- Intervene quickly to put safety protocols in place
- Encourage your loved one to do what they can
- Suggest alternative activities to replace ones your loved one can no longer do
Amanda Lambert is a nationally certified Care Manager and a member of The Aging Life Care Association. She has 25+ years oof experience working with elders
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