Caregivers' Role in Parkinson's Disease Care
As Parkinson's disease progresses, so does the role of a care partner. A carer role is typically one that a person must take on without prior notice. It is a significant change in anyone's life. A carer must be available 24 hours a day.
It is critical to define "caregiving," especially early in the Parkinson's journey when the family carer may not feel like he or she is "giving" care. To provide care, however, one must assess their own natural strength and consider how they can apply it to carers.
Preparing for the role of carer
The role of a carer will change as the loved one's disease progresses. People in their late stage of Parkinson's disease need more assistance with their daily activities than those in the early stage. As a carer, it is important to know about Parkinson's disease and how it progresses to create a care plan, including when and how to get expert assistance. Moreover, each person living with Parkinson's disease has their own unique experience, and not everyone experiences all the symptoms.
Facing challenges
Carers will face a variety of situations, including financial, health, and emotional challenges. Carers are frequently their loved ones' healthcare advocates, managing medications and scheduling and assisting with daily care such as basic hygiene and household tasks. They are also responsible for providing moral and emotional support to their loved ones who have chronic diseases.
Caregiving progression in Parkinson's diseases
The role of the carer in Parkinson's disease evolves as the disease progresses and symptoms worsen. The primary responsibility of a carer in the early stages of Parkinson's disease is to assist their loved one in coping with the diagnosis and learning how to manage medication. For example, the carer will have to encourage and support the patient to complete daily physical exercises and assist them due to their slowness in movement.
As an individual's disease progresses into the mid-stage, the carers duties significantly increase as they might feel tired and sleepy throughout the day, affecting the daily care plan and causing increased frustration.
In the last stages of Parkinson's disease, carers have a lot of responsibilities and challenges because their loved one may have trouble moving around and will need a lot of help. Fall prevention is critical in the final stages of Parkinson's disease because many people experience freezing episodes, which cause a sudden but temporary inability to move, contributing to a fall.
Many assistive devices are available to help people in the late stages of Parkinson's disease with eating, dressing, and walking. In the final stages of Parkinson's disease, a person's thinking ability is also affected, resulting in forgetfulness, confusion, and dementia. Everyone doesn't experience the same symptom, and the role of the carer will vary accordingly.
How to assist someone with Parkinson's disease?
There are several ways to help someone with Parkinson's disease, including:
Medical care:
Parkinson's disease can be treated with medication and surgery, and a loved one can help by:
1. Accompany the person to the doctor's appointment
2. Managing and administering medication
3. Notify the doctor or healthcare provider about the worsening of the symptoms or changes in behaviour so that they can adjust their medication and treatment plan accordingly.
Practical care:
People living with Parkinson's disease can have trouble walking and maintaining their balance, making them more prone to falling. There are many preventive measures that need to be taken while living with someone who has Parkinson's disease
1. Keep the floor clean: Remove any throw rugs, footstools, or other potentially tripping hazards. Allow no loose wires or cables to fall to the ground. Clean up any spills right away.
2. Make the bathroom skid-proof: Put in anti-skid mats and install grab bars in the bathing areas.
3. Ensure the house is well-lit: Make sure entrances, hallways, and staircases are well-lit. Leave the night lights on, so the person can use the restroom without difficulty.
4. Secure the stairs: Ensure that all stair treads are secure and that none are loose, and install a railing on both sides of the staircase for support. If your loved one has trouble using the stairs, consider moving their room to the ground floor and installing ramps for unavoidable stairs.
5. Consult an occupational therapist: An occupational therapist can evaluate a Parkinson's disease patient's living situation and suggest ways to make their daily life safer.
Parkinson's disease can also make everyday activities harder, and the following strategies can help:
1. Plan ahead: Parkinson's disease patients take longer to complete simple daily tasks such as dressing because of symptoms such as hand tremors, muscle cramps, and bradykinesia. It is best to plan ahead of time and give them enough time to complete their tasks. If the person is taking medication, wait for it to take effect before proceeding.
2. Simplify dressing: The person may struggle with zippers and laces, so it would be helpful to keep tools such as zipper pulls, long-handled shoehorns, and dressing sticks handy for them to use. Alternatively, replace their clothes with options that have elasticized closures to make dressing easier. Use footwear with Velcro straps.
Apart from this, they may need assistance with basic personal hygiene tasks.
Emotional care:
Your loved one will require a great deal of emotional support as they adjust to and cope with the diagnosis and symptoms. They may experience a variety of emotional upheavals, leaving them mentally and physically exhausted. Here are some emotional support strategies for carers:
1. Understand Parkinson's disease: Learn about the symptoms and how to adjust the care plan according to each stage so that both the carer and the patient are prepared.
2. Encourage them to seek support: Encourage patient to seek professional help or to join a support group to help them process their emotions and develop coping skills.
3. Plan activities with friends and family: Ensure the PD patient spends time with family and friends.
4. Show affection: Taking care of someone who is terminally ill can be tiring, but make sure they feel loved to keep the relationship going. Rather than making their lives monotonous, add some fun elements that both the carer and the patient can enjoy.
What to avoid as a carer for Parkinson's disease patient
There are some things to avoid when caring for someone with Parkinson's disease.
1. Avoid changing their day-to-day schedule.
2. Avoid distracting stimuli and keep the person's environment free of distractions, such as loud noises or brightly patterned décor, as they can be confusing and disorienting.
3. Avoid confusing them while communicating with the person.
4. Be patient and calm while dealing with them.
5. Don't show your frustration and anger at them.
As Parkinson's disease progresses, the strain on the carer also increases, and even they might need assistance. Taking time away from caregiving duties, maintaining social connections, and asking for help from others are important to help carers cope with the additional responsibilities and stress.
Nurses Group Homecare can step in to assist family carers in taking a break from their duties and allowing a professional carer to take over the responsibilities. Learn more about the other types of care and support we provide by visiting our service page.