You’ve just learned that your loved one has Parkinson’s disease, and you’re freaking out. You’ve only heard about Parkinson’s disease from movies and books, but it was all abstract until now.
How do you take care of someone with Parkinson’s disease? Are you strong enough to handle the change? As the primary caregiver, how do you keep yourself from breaking down? How can you provide successful Parkinson’s disease care?
All these questions and emotions are valid and normal. But to succeed as a caregiver, you must learn about Parkinson’s disease and what your loved one will need.
Here’s a short guide to get you started.
What is parkinson’s disease?
Parkinson’s disease is a neurodegenerative disorder that affects movement and cognition. Parkinson’s disease causes the destruction of nerve cells in a section of the brain known as the basal ganglia.
The brain is composed of distinct sections that send signals to coordinate movements, thoughts, senses, and emotions. When you want to move, signals are sent from the neurons in the basal ganglia to the thalamus, cerebral cortex, and finally, all other brain parts.
This communication is done using a chemical neurotransmitter known as dopamine. Dopamine is made by cells known as substantia nigra and is crucial for normal movement. When these cells die, they cannot produce or transmit dopamine, so the movement signals aren’t communicated.
By the time an individual with Parkinson’s disease is experiencing problems in motor functions, they’ve lost about 50 percent of dopamine-producing cells. Aside from this, someone may develop non-motor symptoms from losing other neurotransmitters ten years before their motor skills start to weaken.
What are the signs of parkinson’s disease?
Individuals with Parkinson’s disease don’t always have the same symptoms. Moreover, these symptoms may change as the medical condition progresses.
Although it’s a movement disorder, Parkinson’s disease patients can develop both motor and non-motor symptoms. Motor symptoms often start on one side and spread to the other, with one side being more severe.
Primary symptoms of Parkinson’s disease include:
- Tremors: Although it’s a common symptom, not everyone with Parkinson’s disease develops tremors. These tremors are most visible at rest and lessen with movement or action. They start with one hand but might also affect the chin, legs, feet, and arms.
- Muscle stiffness and rigidity: Stiffness makes movement challenging and often causes muscle aches.
- Slow or complete loss of movement: Symptoms can manifest with reduced ability to complete regular motor actions at normal speeds or reduced arm swing. Some might even lose the ability to make facial expressions and appear to have a mask on. Because of this, they may smile less or look disinterested.
- Walking and balance problems: People might find it hard to walk at normal speeds or have challenges lifting their legs resulting in foot drop. Alternatively, they may take tiny steps to walk or turn around. As a result of postural problems, the individual may have a stooped torso and shuffling gait.
Because of the body imbalance, individuals with PD are prone to stumbling and falling. And since they cannot instinctively use their arms to break their fall, they are at a higher risk of serious injury. This loss of balance can be a serious problem and they might need full-time Home health nursing in Rockville due to their lack of mobility.
Progression of motor symptoms
The Hoehn and Yahr Scale describes the progress of Parkinson’s disease as below:
- Prodromal symptoms – these are symptoms that manifest years before diagnosis. They include fatigue, anxiety, hyposmia (loss of smell acuity), slowed thinking, and constipation.
- Stage I – motor symptoms appear on one side of their body
- Stage II – Symptoms spread to both sides
- Stage III – Balance impairment creeps in
- Stage IV – Challenges with gait, freezing, or fast steps. They may also have a hard time swallowing and develop more non-motor problems.
- Stage V – Unable to move independently and dependent on a mobility device like a wheelchair.
Generally, the late stages of Parkinson’s disease usher in the toughest symptoms.
Non-motor symptoms
These symptoms may develop ten years before the development of motor symptoms. They include:
- Sleep disorders
- Pain
- Decreased or loss of smell
- Constipation
- Fatigue
- Depression
- Flaking skin around the chin, forehead, and nose
- Other symptoms that develop in later stages of Parkinson’s disease include difficulty in swallowing, speech, and cognition problems.
How do you look after someone with parkinson’s disease??
Since Parkinson’s disease symptoms fluctuate and vary from person to person, it’s difficult to assess their needs definitively. As such, we recommend taking an individualized approach to their care. You’ll have to work together as a team and listen to when they voice their needs.
Below is a general guide that sheds some light on the type and level of care needed a Private duty nursing can offer:
Physical support
As the primary care partner, you must prepare for changes in your loved one’s physical abilities. As you allow them room to be safely independent, discuss daily activities they may need help with. Here’s a checklist to make daily life easier.
Grooming
- Use an electric toothbrush if your loved one has stiff fingers and hands. If you have to help with brushing and flossing, avoid touching the back throat to prevent gagging. Have a towel in hand to wipe off any drool.
- Electric shavers are easier to use. Instead of aftershave, use lotion as it’s gentler on the skin.
Bathing
- For comfort and safety, use the shower. Bathtubs are falling hazards.
- When showering, seat them on a shower stool. Have grab bars for support. Using a handheld showerhead makes bathing easier.
- If dandruff is a problem, use shampoo with salicylic acid or mild coal tar and rinse the hair well.
- To avoid using a towel to dry themselves, use an absorbent terry cloth robe instead.
Dressing
- Buy clothes that are easier to put on, like bras with front hooks, tube socks, and trousers with elastic bands at the waist.
- Avoid rubber-soled shoes as they increase the risk of tripping.
- Make the dressing process easier by laying out clothes in the order they’ll wear them. Provide some dressing aids like long-handled shoehorns and buttonhooks.
- Allow them to dress independently and suggest they sit and start with the most affected side
Eating
- Serve fiber-rich foods like fruits, vegetables, and bran cereals. This helps prevent constipation, a common problem with Parkinson’s patients. If they were on a low-fiber diet before, slowly introduce them to fiber-rich foods.
- Serve a healthy diet rich in calcium 3 times a day to avoid osteoporosis. This is important since falls can easily cause fractures. Dairy foods like yogurt, milk, and cheese are perfect.
- Levodopa, a Parkinson’s drug, gets absorbed faster on an empty stomach. On the other hand, protein reduces its absorption rate. As such, you should space out protein servings after taking this Parkinson’s disease medication; three to four-hours is enough space.
- If they have a tough time swallowing, serve soft and moist foods. Thick drinks are easier to swallow. And if eating is tiring, serve smaller meals several times a day.
Activities
- Despite their symptoms, Parkinson’s patients should participate in engaging activities. There are special tools developed to help with some activities like painting. Speak to an occupational therapist to get some strategies to remain active.
- Some relaxing everyday activities can help ease some symptoms. For instance, listening to music can help reduce tremors.
- Encourage facial exercises by singing, making faces, or reading out aloud.
These daily tasks can be challenging (especially in the advanced stages) for you and your loved one. However, it helps if you focus on what they can do, not what they can’t.
Emotional support for those with parkinson’s
Not being able to complete simple tasks can be frustrating for a Parkinson’s patient. Being patient, understanding, and supportive can help them adjust to the emotional challenges they are going through.
- Help them initiate contact with their friends to avoid isolation and loneliness.
- As you provide support, don’t forget to ask for it too. Being a caregiver is tiring and stressful, so taking care of your needs is important to guarantee optimal performance. Consider respite care.
Financial preparation
Parkinson’s disease can take a toll on your finances with missing work and catering to expensive treatments. As such, a caregiver needs to be financially prepared by understanding their insurance coverage and planning treatment-related costs ahead of time.
Insurance coverage can be complex. Luckily, most healthcare providers can help you contact financial counselors and patient advocates that focus on medical expenses.
Track treatment
It’s important to help a loved one manage treatment. Different Parkinson’s patients need different treatments to address their symptoms. As the symptoms change or progress, other therapies might be needed.
You can help them adapt to the treatments’ changing, doses, and schedules. When a medication has side effects the patient cannot handle, consult with their doctor for adjustment of their treatment plan and medication.
Parkinson’s disease frequently asked questions
Do people with parkinson’s need a caregiver?
Yes. However, patients with early-stage Parkinson’s disease need more emotional support than hands-on care. Primary caregivers should take this time to learn what they can about the disease.
Can parkinson’s patients be cared for at home?
With the knowledge of this nervous system disorder and how it changes lives, you can take care of your loved one at home. Knowing the actions to take against different symptoms, including pain, tiredness, sleep problems, falls, eating and swallowing, can help create a secure and comfortable environment at home.
Does Parkinson’s cause mental confusion?
Some Parkinson’s disease patients may develop mild cognitive impairment. This impairment may be accompanied by feelings of disorganization and distraction, making it harder to plan and execute tasks.
Also, they may have difficulty focusing on situations requiring their attention, such as group discussions. When handling a situation alone, they may be overwhelmed with the idea of making a choice. Some patients may also have difficulty finding correct words to use in their speech.
How do you deal with Parkinson’s dementia?
Behavioral strategies might help deal with symptoms related to Parkinson’s dementia. These include:
- Arranging visits and serving meals at specific times each day. Parkinson’s patients benefit from structure and routine.
- Simplify the home’s décor. Reducing excessive stimuli will help ease confusion, distraction, and memory difficulties.
- Use low-level lighting to decrease visual confusion and misperceptions.
- Remain calm when talking to your loved one.
- Show your loved one affection and care
In addition, you can investigate medications that eases Parkinson’s dementia symptoms.
- Cholinesterase inhibitors – Although these drugs are mainly used in treating cognitive changes in Alzheimer’s patients, they can help with Parkinson’s dementia symptoms like sleep disturbances and visual hallucinations.
- Selective serotonin reuptake inhibitors – are used in treating depression which is common in Parkinson’s dementia.
Why is it important for Parkinson’s patients to take their medication on time?
Taking the medication at stipulated times and in the right doses every day is important. Failure to do this results in the body’s chemical balance being disrupted, making Parkinson’s symptoms worse leading to an increase in daily care needs.
Unfortunately, it may take time before the patient’s needs go back to normal.
Caring for yourself
It’s easy for family caregivers to neglect themselves when tending to their loved ones. However, taking care of your mental and physical health is important as it puts you in the correct headspace and position to care for another.
Below are some tips to take better care of yourself:
- Be intentional with self-care time. With the many things that need to be done, it’s easy to forget personal care. You can prevent this by scheduling and creating time for it. A few minutes meditating or practicing deep breathing exercises can improve your mental health. You can also plan social activities for yourself to avoid getting lonely.
- Keep an eye on your health. Don’t miss dental appointments and regular checkups. Also, eat a balanced diet and exercise regularly.
- Be in a support group. Support groups create a platform to meet and connect with others who understand your challenges and struggles. You’ll also gain access to information on treatment options and other resources you didn’t have. If you can’t make it to physical support groups, virtual ones will do. To learn of any Parkinson’s disease support group in your area, consult a doctor or a social worker specialized in Parkinson’s disease.
What to do now?
Since Parkinson’s disease is unique for every patient, you can modify the suggestions to suit your situation. We strongly recommend you seek advice from a team of medical professionals and get in-home help from a professional home health care agency like Trusted Touch Healthcare, to avoid burnout.
