Parkinson’s disease is a progressive neurological condition that affects a person’s movement. In the late stages of the disease, it can affect mood as well. Sometimes Parkinson’s disease is also associated with changes in behavior.
Most people with Parkinson’s disease are relatively independent, but they might need some assistance or adjustments in the home due to the movement issues.
Because this disease can have wide-reaching effects, living with someone who has Parkinson’s can bring unexpected challenges. It can get more difficult to care for the person as their disease progresses.
Sometimes Parkinson’s disease can be unpredictable. Motor symptoms can shift from one day to another, and even from one hour to the next.
This can be frustrating for a person who has the disease because they may feel that their muscles are easy to move in the morning and then stiffen later in the day, or the other way around.
When you’re caring for someone with Parkinson’s, learning all you can about the disease and what to expect can help you communicate with your loved one in a more sensitive and understanding way.
You’ll also be able to anticipate the person’s needs, so you can offer the right kind of help.
The movement-related symptoms of Parkinson’s, like tremor and stiffness, may be most familiar to you. This condition also causes a variety of non-motor symptoms.
Motor symptoms of Parkinson’s disease include:
- slowed and small movements (called bradykinesia)
- tremor, which may be on one side of the body and involve a “pill rolling” action of the fingers when the person is at rest
- balance problems
- trouble walking, sometimes dragging one foot
Non-motor symptoms include:
- trouble thinking, remembering, and planning
- personality changes
- mood disorders like anxiety and depression
- hallucinations, or seeing or hearing things that aren’t real
- sleep disorders, such as insomnia or restless legs syndrome
- dizziness when standing (orthostatic hypotension)
- nausea or vomiting
- feeling full quickly after eating
- weight loss or gain
- excess sweating
- problems urinating
- erectile dysfunction or other sexual problems
A few symptoms combine motor and non-motor symptoms:
- a soft voice
- chewing and swallowing problems
- trouble speaking
Treatments are available for many of these issues. As a caregiver, part of your role may be to encourage your loved one to talk about their symptoms with their doctor and help them get more resolved.
Parkinson’s disease affects a person’s mental health in a few different ways. It has direct effects on the brain, and it causes stress because it’s a chronic disease. Other side effects, like sleep loss, can affect a person’s emotional health.
Also, Parkinson’s medications can wear off suddenly and lead to “off periods” where motor symptoms abruptly worsen, which might have your loved one feeling frustrated.
It’s possible that your loved one may feel self-conscious about their disease and its symptoms, too. Depression and anxiety are two of the most common symptoms of Parkinson’s disease.
Dementia may occur with Parkinson’s disease, especially in its later stages. This can lead to trouble remembering, paying attention, and using language correctly.
Less often, people with Parkinson’s will have hallucinations, or seeing or hearing things that aren’t real. Psychosis is a side effect of certain medications used to treat Parkinson’s.
Most people who have Parkinson’s disease are aware of this side effect and may ask for changes in medication when hallucinations occur. Often, adjusting medications eliminates the hallucinations.
It may be hard for you to deal with some of your loved one’s personality and behavior changes. Though it can be hard for you to understand just what they’re going through, try to be compassionate.
Remember that the disease is not their fault, and they’re not choosing to act this way.
Use empathetic language whenever you talk to the person. For example, if your loved one says, “I’m so frustrated because I keep losing my train of thought in the middle of a sentence!” respond, “That must be so hard for you. I can see why you’re frustrated.”
Empathetic language shows the person that you’re trying to understand what they’re going through and that you care about them.
Try to be patient when communicating with your loved one. Parkinson’s disease can make it harder for them to speak clearly and quickly. Give the person extra time to get their thoughts across.
When you call or visit, here are a few helpful questions to ask:
- Are you having any new symptoms?
- Have any of your existing symptoms gotten worse?
- Have you had trouble sleeping? If so, what’s keeping you awake (the need to urinate, pain, tremors, etc.)?
- Do you have trouble eating? Which foods are hard for you to swallow?
- Do you feel any stress or anxiety?
- Is it hard for you to think clearly or remember?
- Are you taking your medications on the schedule your doctor prescribed? If not, do you need help remembering to take them?
- Are you having any side effects from your medications that bother you?
- What can I do to help you?
Parkinson’s disease affects more than just the person who has the disease. It can have a ripple effect on the whole family.
As a caregiver for someone with Parkinson’s, it’s important to have patience with them and yourself. The role can become overwhelming if you don’t care for yourself at the same time.
A caregiver support group is a place where you can get any concerns off your chest. You’ll be surrounded by people who understand what you’re going through, and who can offer support and advice.
In-person and online Parkinson’s disease caregiver support groups are available through organizations like these:
Caring for a loved one with a chronic disease can present difficulties. The variability and changing nature of Parkinson’s symptoms makes it an especially challenging disease to manage.
However, resources are available for your loved one and for you to help cope with the challenges.
To better help your loved one and to help ease the stress on yourself, learn as much as you can about the disease. Try to be as empathetic and patient as possible. And seek help from a caregiver support group when you need it.