Parkinson’s disease is a movement disorder that affects the central nervous system, leading to symptoms like tremors, stiff muscles, restless sleep, balance problems, speech issues, and confusion.
If your spouse has Parkinson’s and you’d like to continue caring for them yourself, how do you do it?
Here are 5 quick tips for caring for a spouse with Parkinson’s:
- Learn about their disease
- Keep them active
- Help them when they need it
- Monitor their symptoms
- Keep them current on their medications and medical appointments
This guide will tell family members everything they need to know about the delicate situation that is caring for a spouse with Parkinson’s. Keep reading for lots of valuable information.
What To Expect When A Loved One Has Parkinson’s Disease
Although Parkinson’s is neurological (beginning in the brain), it can affect the whole body. It can even be responsible for certain non-motor symptoms. Here is some of what you can expect when a spouse or loved one has Parkinson’s.
Tremors And Tightness
The tremors that accompany Parkinson’s disease are a trademark symptom. They might start when your spouse is in certain positions or when resting. The tremors mostly affect the hands but can occur in any limbs.
Beyond that, your spouse or loved one might also experience trembling, writhing, and tightness in the neck. This tightness can affect how easily they can swallow.
Tightness can affect other muscles, as well. I once had a patient who found out she was having early Parkinson’s symptoms when she began taking small steps and couldn’t walk at a normal pace on her daily walks in the park. She said her legs were “too tight.”
At that time,she had no other symptoms, but her family insisted she seek medical care to find out why she couldn’t walk at her regular pace. After testing, she was diagnosed.
Depression Or Apathy
Parkinson’s can also lead to mental health and changes in mood or mood disorders.
According to the Cleveland Clinic, “Up to 50% of people with Parkinson’s disease experience depression. These overwhelming and long-lasting feelings come from chemical changes in your brain.“
Family caregivers might notice increasing symptoms of depression in their loved one during disease progression. These can include:
- Moving or talking slow
- Talking (or thinking) about dying
- Tired and with little energy
- Lack of interest in things they used to enjoy
- Irritable and little things get to them
- Sleep problems
- Unable to concentrate
If your spouse was once a sunny person, the disease can change them. They might seem apathetic often, with a blank stare on their face.
Part of their blank expression might have to do with their mental health struggles, and part of it could be that they can’t make as many facial expressions as they once could. Parkinson’s can lead to painful facial stiffness, so a neutral or blank expression sometimes feels best.
In either case, if you see these signs, it’s a good idea to talk to your spouses’ healthcare providers.
The care team can check the person’s prescription medications to be sure they aren’t contributing to the depression and can recommend psychiatric counseling or depression medications. Both of these can make a huge difference for Parkinson’s disease patients.
Changes To Smell
Parkinson’s can even affect one’s sense of smell. In some cases, the disease causes an inability to sense smells at all. In other instances, one’s sense of smell becomes distorted.
Since Parkinson’s can contribute to voice box spasms, a person with this disease won’t speak with the same gusto they once did. Their speech patterns might soften, and they could even struggle to speak.
Parkinson’s can cause cognitive issues that usually worsen in the evening. During those hours, your spouse or loved one might struggle with understanding and thinking.
It’s tough for someone with Parkinson’s to get a good night’s rest. They’re likely to experience a variety of sleep disturbances throughout the night, such as sleeping restlessly, having nightmares, or waking up too early in the morning.
Stiff, Rigid Muscles
Remember my patient from earlier in this article? She was diagnosed after her walking pace slowed dramatically and she couldn’t seem to walk any quicker.
Just like her, the stiff, hardened muscles can affect the entire body, slowing your spouse’s gait and movement speed, affecting their coordination, and hampering their ability to walk.
Your spouse or loved one may be more likely to fall and can develop a fear of falling as a result.
What Personality Changes Occur In Parkinson’s?
As the disease progresses, patients can experience a wide range of personality changes due to the physical and mental effects of the illness.
These can include:
- impaired judgment
- difficulty in controlling emotions such as anger and irritability
- mood swings
- apathy or depression
- difficulty in problem-solving or decision-making
- memory loss or confusion.
Additionally, Parkinson’s patients may also experience changes in character traits such as increased social withdrawal or an overly sociable attitude.
All of these symptoms can be distressing for both the patient and their family members. That’s why it’s so important for the Parkinson’s care partner to talk to the patient’s doctor about any concerns that come up, so the person gets appropriate treatment and support.
How Does Parkinson’s Affect Relationships?
If your spouse receives a diagnosis of Parkinson’s disease, everything will change, including your relationship.
Your spouse’s ability to walk and even care for themselves may be hampered or negated altogether. This can lead to a lot of frustration for both of you.
The mental health effects of Parkinson’s can leave them listless, hopeless, and unwilling to get out of bed.
Some days, the pain may be too great for them to do much, which will also diminish their spirit.
Sexually, the relationship will surely change, which is another blow to any relationship.
For these reasons, we’d strongly recommend that you investigate in-person or online support groups, for both yourself and your spouse:
- The Parkinson’s Foundation has a help line (1-800-473-4636) that can answer questions and help you find a caregiver support group near you.
- The Michael J. Fox Foundation has a Buddy Network that can connect you with other caregivers and those who are experiencing Parkinson’s disease, so they can offer their unique perspectives to those affected by this chronic illness.
Do Parkinson’s Patients Need Caregivers?
Speaking of what’s doable, can you take care of your spouse at home yourself, or will you need to consider hiring a live-in caretaker?
You could take care of your spouse with Parkinson’s yourself. This disease requires less hands-on care for the physical aspects – at least in the early stages. Instead, it’s about emotional support and spending time with the Parkinson’s patient.
If you work full-time and also juggle caretaking for other members of the family, such as children or a senior parent, you might struggle to find the time for your spouse with Parkinson’s. That’s okay!
You’re only one person who has 24 hours in a day, just like the rest of us.
You must take some time for yourself to care for your own health and your own needs because if you don’t, you’ll burn out and be of no use to anyone else in your family.
Hiring a caregiver doesn’t mean you’ve failed or that you’re not doing enough for your spouse with Parkinson’s. It means you need extra help, and there’s nothing wrong with admitting that.
How Do You Take Care Of Someone With Parkinson’s Disease?
Whether you decide to dive head-first into the role of caretaker for your spouse with Parkinson’s or you’re helping out here and there when you can, these tips will make caregiving easier.
Learn About Their Disease
As discussed earlier, although Parkinson’s is a neurological disease, it affects the body from head to toe.
Do some research into the disease. Get to know your spouse’s symptoms and how those symptoms may change. Research treatment modalities and discuss them with your spouse’s doctor.
You don’t need to be a walking, talking encyclopedia entry on Parkinson’s, but understanding the disease and especially how it affects your spouse will make care giving worlds easier.
Keep Them Active Both Physically And Socially
Physical exercise is one of the best treatments for a Parkinson’s patient, as activity might lessen the muscle pain and stiffness they experience.
However, you have to expect your spouse is in pain. They might not want to get up and exercise. In these situations, you need to act as their motivator and cheerleader, inspiring them to take a short walk or do some stretching.
Likewise, your spouse may no longer want to put in the effort required for social interactions, especially as they experience the physical changes that come with Parkinson’s.
But it is important to continue social activities so you and your spouse don’t become isolated. Getting together with friends and family can reduce caregiver stress for you (take our compassion fatigue test here) and help your spouse with Parkinson’s feel more connected.
TIP: It’s better to plan activities at the time of day when your spouse does best (when their medications work best, when they are most rested, etc).
Monitor Their Symptoms
A Parkinson’s patient might not remember which symptoms they’re experiencing from day to day, especially if they’re in more advanced stages and prone to confusion.
That’s why it’s a good idea for you to monitor their symptoms.
- Start a journal or use a phone app to track symptom severity. Do certain triggers cause your spouse’s symptoms to worsen, or does it just seem random?
- Have their symptoms improved overall, or do they seem to get worse?
You won’t be able to answer these questions from day one, but the longer you log your spouse’s symptoms, the greater your insights will be.
Go To Doctor’s Appointments
On that note, make sure you’re accompanying your spouse to their doctor’s appointments.
During their appointments, you can let their doctor know if you’ve noticed any changes in your spouse’s symptoms.
This can make the appointments more fruitful and get them started quicker with treatment options, such as seeing a speech therapist or physical therapist as they experience more side effects of the disease.
Keep Them Current On Their Medications
Many Parkinson’s patients take several medications, such as anti-tremor prescriptions, cognition-enhancing medications, antidepressants, and dopamine promoters to reduce symptom severity.
With the confusion and other mental health struggles a Parkinson’s patient may have, it helps if you can remind your spouse to take their medications.
You can always use an app to keep them current on their medications each day.
What Aggravates Parkinson’s Disease?
There are several factors that can worsen the symptoms of Parkinson’s disease.
- Stress is a major factor, as it can cause stiffness and trembling in patients.
- Too much caffeine or nicotine can also make tremors more pronounced
- Alcohol consumption may worsen muscle rigidity and slowness of movement.
- Fatigue is a common symptom of Parkinson’s and can be worsened by inadequate sleep or physical activity.
- Certain medications, such as those used to treat depression and anxiety, can have side effects that make tremors worse.
In addition, there are certain health conditions that can make Parkinson’s symptom worse. These include:
- Anxiety disorders
- Thyroid problems
- Hypoglycemia (low blood sugar)
- Cardiovascular diseases such as hypertension and coronary artery disease
- Chronic obstructive pulmonary disease (COPD)
- Certain infections like urinary tract infections.
- Additionally, some medications used to treat other illnesses may have side effects that can worsen the symptoms of Parkinson’s.
This is just another reason why caregivers should go with their spouses to doctor appointments. That way, both of you discuss any concerns with the doctor to find the best treatment plan as things change.
Can Parkinson’s Patients Be Cared For At Home?
If you decide to hire in-home care or you want to be the primary caregiver for your spouse with Parkinson’s, does this mean they inevitably will have to leave your home and live in a facility?
If you’re prepared to help your spouse with getting to and from the bathroom, eating, dressing, bathing, and other tasks of daily life, or if you can hire an in-home caregiver to do these things, there’s no need to move them out of your home.
However, you do need to watch the severity of your spouse’s symptoms over time.
If they’re struggling more and more to get around, or you can no longer safely assist them in their daily routines, it might be time to consider a different living arrangement.
Do Parkinson’s Patients End Up In Nursing Homes?
Parkinson’s disease can change over time, eventually leading to what’s known as advanced Parkinson’s or complex Parkinson’s.
To better understand advanced Parkinson’s, let’s go over the five stages of this disease. The quotes in italics are per the Parkinson’s Foundation.
- Stage One: A person with Stage One Parkinson’s is newly diagnosed and usually has mild tremors. “During this initial stage, the person has mild symptoms that generally do not interfere with daily activities. Tremor and other movement symptoms occur on one side of the body only. Changes in posture, walking and facial expressions occur.“
- Stage Two: By Stage Two, muscle rigidity and tremors worsen, which makes it more difficult for a Parkinson’s patient to get around. “Tremor, rigidity and other movement symptoms affect both sides of the body or the midline (such as the neck and the trunk). Walking problems and poor posture may be apparent. The person is able to live alone, but daily tasks are more difficult and lengthier.”
- Stage Three: The mid-stage of Parkinson’s disease, Stage Three reduces one’s balance to the point where falls become a lot more likely. The patient’s motor symptoms continue to decline, but a Parkinson’s patient can still be mostly independent at this stage if they wish. “Disability is mild to moderate at this stage.”
- Stage Four: By Stage Four, a Parkinson’s patient cannot walk long distances without a walker or cane. They can’t maintain independence and need help with everyday activities like eating and dressing. “At this point, symptoms are fully developed and severely disabling. The person is still able to walk and stand without assistance, but may need to ambulate with a cane/walker for safety. The person needs significant help with activities of daily living and is unable to live alone.“
- Stage Five: This is advanced Parkinson’s. A patient at this stage might struggle to walk or even stand and might spend all their time in bed. They need 24/7 personal care for their daily activities of living (bathing, dressing, toileting, etc). “This is the most advanced and debilitating stage. Stiffness in the legs may make it impossible to stand or walk. The person is bedridden or confined to a wheelchair unless aided. Around-the-clock care is required for all activities.“
You can see how by Stage Five, a Parkinson’s patient becomes a prime candidate for a nursing home or assisted living facility. They can still possibly live at home if they have full-time care from yourself or a caretaker.
Caring for a spouse with Parkinson’s disease will help them maintain a better quality of life. You can keep them in a familiar place (their home) and strengthen your relationship by spending meaningful, quality time together.
While your spouse might have to eventually live at a nursing home or assisted living facility once they enter Stage Five Parkinson’s, you may have the option to keep them home, which will make those difficult days more bearable.