I live with my 81yo father who has Parkinson's. I am retired on disability due to previous mental health issues that are stabilized/healed. My father asked me to not go back to work as long as he needs care. We are able to provide with our income. What can I expect as he progresses? He no longer drives nor is left alone for long. I have support from my grown children to stay with him when I need to run errands, etc. He still bathes and grooms himself and walks with a cane and/or walker. I handle pretty much everything else (running the home, meals, laundry, errands, etc.). When, if ever, will it be time to get home health care or transition to assisted living. Trying not to be afraid of the future and plan ahead as much as possible.
michaeljfox.org
From your description, sounds like your father is in STAGE 4.
Here's a copy of the stages and progression from another website.
Parkinson’s disease (Parkinsonism) is marked by the presence of certain recognizable symptoms. These include ncontrollable shaking or tremor, lack of coordination, and speaking difficulties. However, symptoms vary and may worsen as the disease progresses.
The main symptoms of Parkinson’s include:
uncontrollable shaking and tremors
slowed movement (bradykinesia)
balance difficulties and eventual problems standing up
stiffness in limbs
Many doctors who diagnose this brain disorder rely on the Hoehn and Yahr rating scale to classify the severity of symptoms. The scale is broken into five stages based on disease progression. The five stages help doctors evaluate how far the disease has advanced.
Stage 1 is the mildest form of Parkinson’s. At this stage, there may be symptoms, but they’re not severe enough to interfere with daily tasks and overall lifestyle. In fact, the symptoms are so minimal at this stage that they’re often missed. But family and friends may notice changes in your posture, walk, or facial expressions. A distinct symptom of stage 1 Parkinson’s is that tremors and other difficulties in movement are generally exclusive to one side of the body. Prescribed medications can work effectively to minimize and reduce symptoms at this stage.
Stage 2 is considered a moderate form of Parkinson’s, and the symptoms are much more noticeable than those experienced in stage 1. Stiffness, tremors, and trembling may be more noticeable, and changes in facial expressions can occur. While muscle stiffness prolongs task completion, stage 2 does not impair balance. Difficulties walking may develop or increase, and the person’s posture may start to change. People at this stage feel symptoms on both sides of the body (though one side may only be minimally affected) and sometimes experience speech difficulties. The majority of people with stage 2 Parkinson’s can still live alone, though they may find that some tasks take longer to complete. The progression from stage 1 to stage 2 can take months or even years. And there is no way to predict individual progression.
Stage 3 is the middle stage in Parkinson’s, and it marks a major turning point in the progression of the disease. Many of the symptoms are the same as those in stage 2. However, you’re now more likely to experience loss of balance and decreased reflexes. Your movements become slower overall. This is why falls become more common in stage 3. Parkinson’s significantly affects daily tasks at this stage, but people are still able to complete them. Medication combined with occupational therapy may help decrease symptoms.
Stage 4: Independence separates people with stage 3 Parkinson’s from those with stage 4. During stage 4, it’s possible to stand without assistance. However, movement may require a walker or other type of assistive device. Many people are unable to live alone at this stage of Parkinson’s because of significant decreases in movement and reaction times. Living alone at stage 4 or later may make many daily tasks impossible, and it can be extremely dangerous.
Stage 5 is the most advanced stage of Parkinson’s disease. Advanced stiffness in the legs can also cause freezing upon standing, making it impossible to stand or walk. People in this stage require wheelchairs, and they’re often unable to stand on their own without falling. Around-the-clock assistance is required to prevent falls. Up to 30 percent of people at stage 4 and 5 experience confusion, hallucinations, and delusions. Hallucinations occur when you see things that aren’t there. Delusions happen when you believe things that aren’t true, even when you have been presented with evidence that your belief is wrong. Dementia is also common, affecting up to 75 percent of people with Parkinson’s. Side effects from medications at these later stages can often outweigh the benefits.
The progression of Parkinson’s disease is most commonly evaluated by motor symptoms such as muscle stiffness and tremors. However, nonmotor symptoms are also common. Some people will develop these symptoms years before developing Parkinson’s, and some will develop them after. Anywhere from 80 to 90 percent of people with Parkinson’s disease will also experience nonmotor symptoms.
Nonmotor symptoms include:
cognitive changes, such as difficulties with memory or planning, or slowing of thought
mood disorders such as anxiety and depression
sleep disorders such as insomnia
fatigue
constipation or urinary incontinence
vision problems
speech and swallowing problems
difficulties with sense of smell
Nonmotor symptoms may require additional treatment in many people. These symptoms can advance as the disease progresses
My mother-in-law is now in skilled nursing facility due to needing a catheter to help with urinary incontinence that caused UTI's, urinary tract infections, that made her unable to move or communicate. Get a home health evaluation from your father's doctor and get plans in place now. Things can change very rapidly and no two patients respond the same.
Don't wait for a crisis to explore and use whatever supports are available now and in the future, and always have a Plan B.
When careing for him becomes too difficult. Don't try to be a "hero" and in the process, ruin yourself. It's happened to many of us.