It starts with a slight tremor in the hand. Or maybe trouble sleeping. Then the arms and legs grow stiff. Shoulders hunch. Steps become slow and spasmodic. Your loved one can barely talk, and their muscles shake so badly it is a struggle to get dressed. Their balance is so poor the doctor advises you to buy them a walker. But the disease has left them so weak, you doubt it is safe to leave them on their own anymore.
Parkinson’s develops differently in each patient. Some deteriorate rapidly, while others remain strong and active for years. It is unclear why. Doctors know that exercise and physical therapy can slow the disease, but there is no way to stop it. Even the healthiest patients will eventually decline until the end stage of Parkinson’s, when they are left completely dependent on family and caretakers.
Anyone who’s loved one has been diagnosed needs to be aware of the challenges ahead. It will leave you ready to offer help as their condition worsens and ask for it when it grows unmanageable.
Stages of Parkinson’s Disease
Parkinson’s follows a predictable pattern. In the early stages, symptoms are inconvenient. By the end, they are incapacitating.
- Stage One. Patients experience tremors on one side of their body. One arm or leg will feel heavy, but not to the point it interferes with daily life. In fact, symptoms are so slight, they are sometimes overlooked at this stage.
- Stage Two. Symptoms are clearly visible and affect both sides of the body. Patients become stooped as tremors grow more pronounced. Their face becomes frozen, like they are wearing a mask. Muscles are rigid, making it difficult to bend their trunk, arms, and legs. However, balance is not yet impaired, and most patients continue to live independently.
- Stage Three. Patients are at serious risk of falling. Balance is compromised. Reflexes and coordination are poor. Muscles are so stiff that patients can only take short, shuffling steps. Tremors are more serious as well. Despite this, most patients can still complete daily tasks, though it requires more time and greater effort.
- Stage 4. Patients can no longer live on their own. Balance is so weak that while it may be possible for them to stand, they will not be able to move without a walker. Some freeze periodically, unable to move for short periods of time.
- Stage 5. Patients cannot walk or stand without assistance and require round-the-clock care.
For family members, the end stage of Parkinson’s places incredible demands on their time, energy, and stamina. Trying to do everything on your own puts you and your loved one at risk, so make sure you have a support network in place to help shoulder the burden.
Parkinson’s affects more than balance and motor skills. Almost every other part of the body deteriorates as well. Throughout the course of the disease, patients may experience:
- Loss of Smell
- Body Aches
- Tooth Decay
- Dry Mouth
- Dry Eyes
- Double Vision
- Low Blood Pressure
- Trouble Swallowing
- Inability to Talk
Some of these symptoms can be treated with diet, exercise, and medication. These can prolong patients’ quality of life for a time but may not be effective in the end stage of Parkinson’s.
Mental Health Symptoms
Parkinson’s damages the brain and over time this can lead to changes in behavior. They appear early in some patients, late in others. Not everyone experiences these problems and when they appear, they are not always debilitating.
The most common mental issues seen in Parkinson’s patients are:
- Shortened Attention Span
- Inability to Focus
- Loss of Inhibitions
In certain cases, brain damage becomes so severe the patient slides into dementia. Instead of acting like the person you remember, they become hostile, suspicious, or even abusive. If the prefrontal cortex (which controls inhibitions) has been impaired, they might make sexually suggestive comments or remove their clothes in mixed company. This is obviously distressing, but it is important to remember that it is the disease that is responsible, not the patient. Even though they are not the way they used to be, they still deserve our kindness, love, and understanding.
Patients are particularly prone to acting out in the end stage of Parkinson’s. When it happens, the best strategy is to remain calm and redirect their attention. For example, you could:
- Change the Subject. Ask them about an unrelated topic, perhaps something from their past.
- Take Them Outside. Fresh air and sunlight improve oxygen flow and trigger mood stabilizers in the brain.
- Give Them an Activity. Make sure it is something they find meaningful. Old hobbies or household tasks generally work best.
- Offer Them Refreshment. Patients often become agitated when hungry or thirsty.
- Change the Environment. Overstimulation can cause patients to act out. Dark spaces can cause anxiety. Excessive heat or cold can trigger anger.
Talk to a doctor if the behavior continues. They might be able to prescribe something to calm the patient. Or they might find an underlying medical cause, like a urinary infection.
Managing Symptoms in the End Stage of Parkinson’s
Because of the degenerative nature of the disease, patients in the end stage of Parkinson’s are at severe risk of:
- Bed Sores
- Urinary Tract Infections
- Digestive Problems (e.g., Gastritis, Stomach Ulcers, Delayed Gastric Emptying)
To avoid serious complications, patients require 24-hour assistance. This includes:
- Shifting Them Every Two Hours. To prevent their weight from opening wounds on the skin.
- Toileting. Besides walking patients to the bathroom, caregivers need to help them undress and clean up afterwards.
- Changing Diapers. If the patient is confined to bed, their diapers need to be checked and changed every two hours to prevent excoriation (waste eating away at the skin).
- Bathing & Grooming. If the patient cannot get to the shower, the caregivers will need to give them a sponge bath. Patients will also need help trimming their nails, combing their hair, and brushing their teeth.
- Eating. Caregivers may have to push patients to eat, if they are able. Because of difficulties chewing and swallowing, soft foods may be all they can eat at this stage. Oatmeal, scrambled eggs, yogurt, applesauce, mashed potatoes, and smoothies are good choices. If you serve solid food, cut it into small pieces to prevent choking.
- Drinking. Patients need to drink 6-10 glasses of water a day to stay hydrated.
- Organizing Medication. Patients are usually prescribed several medications to reduce shakes and control movement. Medications need to be carefully organized and all caregivers need to be briefed on their instructions.
Caregiving can be exhausting. If you are having trouble, consider reaching out to a home health care agency. Trained to care for chronic diseases, their aides can assume some of the responsibility while you manage other aspects of your life, such as career and children.
When is it Time for Hospice Care?
Even though the course of Parkinson’s is predictable, the end stage of Parkinson’s is not. Despite its severity, people do not die from Parkinson’s. Instead, it leaves patients vulnerable to injury or infection which, in their weakened state, is often fatal.
Knowing when to call hospice is therefore not a simple matter of tracking symptoms. However, families should consult a physician if symptoms escalate, especially if their loved one is experiencing:
- Persistent Pain
- Irregular Breathing
- Shortness of Breath
- Rapid Weight Loss
- Difficulty Swallowing
- Systolic Blood Pressure Below 90
- Frequent Falls or Poor Balance
- Reoccurring Infections
- Constant Nausea
Once the doctor has given the patient a six-month prognosis, you can call a hospice team to begin comfort care. Comfort care provides relief from pain, nausea, and shortness of breath. Working closely with the patient’s doctor, the hospice team creates a personal care plan to manage symptoms. Nurses check in regularly to adjust pain medication. Home health aides tend to the patient’s hygiene. Case managers secure high-grade equipment, such as hospital beds or oxygen machines. There are counselors as well, for emotional and spiritual support.
Patients can receive hospice at home, a skilled nursing facility, a retirement community, or a hospice house. But wherever you choose, it gives patients a chance to spend their final weeks or months free of pain. In addition, it removes a huge burden from the family. Instead of worrying about care, they are free to process their emotions and make peace with their loved one before they pass away.
Jose Escobar is the Hospice Executive for Parentis Health. He works with patients and families across Southern California, providing support and education, in order to alleviate the pain and suffering of chronic and terminal illness.
Lewis Jackson writes about technology and healthcare. His work provides practical insight into modern medicine and healthy living.