Preparing For Your Role As Caregiver
Your role as a caregiver will change as your loved ones disease progresses. People with late stage PD need more assistance with everyday activities than those in early stages of the disease. Learn about the disease and how it progresses to create a plan for care, including what outside assistance you may need and when. While learning about PD, remember that each person has their own unique experience, and not everyone experiences every symptom.2
Foster A Good Relationship
Lastly, maintaining your relationship and communication with the person with Parkinsonâs can be the most challenging and rewarding aspect of caregiving. As Parkinsonâs disease progresses, the roles change and the person with Parkinsonâs may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.
How Doctors Diagnose Parkinsons Disease
At this time, there arent any tests specifically used to diagnose Parkinsons disease. Your doctor will need to look at your nervous system, which often means going to a specialist. Both your own doctor and the specialist will look at your medical history and family history. A physical and neurological exam will be performed, as well as a look at all the symptoms youre experiencing.
Some blood tests may be required. These arent to test for Parkinsons, but to rule out other conditions that can cause the symptoms. MRI and PET scans can also be ordered to rule out other conditions within the brain, but they dont help with diagnosing Parkinsons disease.
Doctors may only be able to officially diagnose you after testing out a medicine for the disease. Youll usually be given a high dosage of carbidopa-levodopa. This medication helps to reduce your symptoms if they are caused by Parkinsons disease. If not, you wont see any improvement after a couple of days use.
Your doctor will likely order multiple follow-up appointments and tests. This isnt the easiest condition to diagnose, despite many clear symptoms. Often the symptoms can start minor and disguise themselves as other conditions. Your doctor will want to rule out any other conditions to make sure you get the right treatments for your disorder.
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Everything You Need To Know About Caregiving For Parkinsons Disease
Caregiving for those who suffer from Parkinsons disease comes with many challenges, from how to deal with guilt and loneliness to avoiding burnout and figuring out what to expect from an unpredictable disease. When giving care, too often caregivers neglect their own well-being.
Everything You Need to Know About Caregiving for Parkinsons Disease is not just about caring for your loved one, but also about taking care of yourself.
Lianna Marie served as her mothers caregiver for more than twenty years after she was diagnosed with Parkinsons disease. Drawing on firsthand experience, her training as a nurse, and the many stories of others she has helped and counseled over the years, Marie shares her wisdom and advicepractical and emotional.
Trained Experts In Parkinsons Disease Care
We understand the rough days when you shuffle more and cant stop the shaking. Our in-home care professionals know just when to nudge you through exercises, when to cook some meals ahead, or when to help you relax and talk through how youre really feeling about the limitations on your body. We notice the changes in posture and facial expression and help you make comfortable adjustments to maintain coordination and balance.
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How Can I Avoid Burnout
Here are a few tips to help you avoid caregiver burnout.
- Learn everything you can about Parkinsons disease. Youll be better equipped to manage your loved ones care if you know what to expect and understand what strategies are most helpful.
- Dont try to take on every aspect of the persons care yourself. Make a list of tasks that need to be done. Then, delegate them to friends, family, and members of your community who are willing to help. You can hire people to help around the house so you dont have to do it all yourself. Your insurance may also pay for part-time caregivers for your loved one with Parkinsons disease.
- Stay organized. Keep a binder of doctors names, medications, and other important information youll need on a daily basis.
- Dont neglect your own health. You cant be any help to your loved one if you get sick. Eat well, exercise, and get enough sleep. Keep up with all of your medical appointments.
- Find your joy. Hold on to the parts of your life that are most important to you such as your job, family, and hobbies. Set aside time each day to do something just for you.
Options For Parkinsons Disease Care
These burdens can ultimately lead a family caregiver to explore alternatives for Parkinsons disease care. Eventually, many decide to place their loved ones in long-term care facilities, such as assisted living or a nursing home.
Assisted living residents usually receive help with daily tasks, meal preparation, medication management, and escorts to doctors appointments. A nurse is onsite 24/7 and apartments are equipped with emergency call buttons so residents can summon help when necessary.
However, assisted living facilities generally arent equipped to care for people with severe mobility problems or advanced dementia. As a result, your loved one will likely be transferred to a skilled nursing facility once they reach the advanced stages of Parkinsons disease. Unfortunately, the expense of assisted living could quickly deplete their financial resources, limiting your choice of facilities to Medicaid nursing homes.
Nursing homes have their own issues. Even the best facilities tend to be understaffed, and few can provide the level of one-on-one care most people desire for their loved ones. Residents will be competing with each other for staff members limited attention, and those with advanced Parkinsons disease may not be able to communicate in a way that ensures their needs are met. These same issues may also make Parkinsons disease patients more vulnerable to physical or sexual abuse.
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Stay On Top Of Insurance
If you were always the one who handled questions of insurance coverage, great but if not, you may want to familiarize yourself with the terms of your health insurance. Youll need to know details about if and to what extent your plan covers prescriptions, therapy sessions and other unexpected items.
Who Gets Parkinsons Disease
Parkinsonâs disease, documented in 1817 by physician James Parkinson, is the second most common neurodegenerative disease after Alzheimerâs disease. Estimates regarding the number of people in the United States with Parkinsonâs range from 500,000 to 1,500,000, with 50,000 to 60,000 new cases reported annually. No objective test for Parkinsonâs disease exists, so the misdiagnosis rate can be high, especially when a professional who doesnât regularly work with the disease makes the diagnosis.
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What Type Of Responsibilities Can I Expect
Parkinsons disease can affect many parts of someones life, from their movement to their ability to speak and eat. Your level of responsibility will depend on your loved ones disease stage and how well they can care for themselves.
Here are some things you might do as a caregiver:
- take the person to doctors appointments and help them communicate with their medical team
- refill prescriptions and check that your loved one takes all of their medications on schedule
- keep track of Parkinsons symptoms and drug side effects to report to their doctor
- help them get around safely without falling
- manage household chores such as cleaning and paying bills
- prepare meals and help your loved one eat, making sure they dont choke
- assist with daily grooming tasks like bathing and dressing
- take them out for exercise and social interaction
- facilitate communication if they have trouble speaking and writing clearly
- help them remember important dates and events if they have memory issues
- calm them when they have symptoms like hallucinations and delusions
- manage their finances, including health insurance, medical bills, and expenses
- be patient and supportive
Overview Of Parkinson’s Disease
Parkinson’s is a disease of the brain that affects multiple body systems. Dopamine, a key catecholamine neurotransmitter in the substantia nigra of the middle brain and a requirement for the body’s movement and coordination, is slowly depleted. Usually Parkinson’s patients present with at least one of four cardinal clinical symptoms: tremor, bradykinesia , rigidity, and postural instability. Because of Parkinson’s substantial impact on the motor system, it is classified under a general umbrella term of movement disorder. It is important to understand that not all Parkinson’s patients present with motor symptoms initially. Symptom experiences range from decreased physical capacity , psychological or nonmotor fluctuations , and social changes .
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What Are The Signs Of Caregiver Burnout
Caregiver burnout happens when your duties push you to the point of exhaustion. You can reach this stage when you spend so much time caring for the other person that you neglect yourself or you put too many demands on yourself.
Signs of caregiver burnout include:
- feeling sad, irritable, or hopeless
- losing interest in activities you used to love
- avoiding friends and family
- sleeping too much or too little
- feeling physically or emotionally exhausted
- getting sick more often than usual
If you experience any of these signs, its time to get help.
Caregivers Guide For Parkinsons Disease
Parkinsons disease is a complex neurodegenerative motor disorder, meaning there are many features of the disease that will change over timeslowly in most people. And, while no two people experience the disease the same way, there are a number of common symptoms caregivers can look out for that may help prepare them for the changes likely to occur during early-stage, mid-stage, and advanced-stage Parkinsons disease.
As PD progresses, patients may have increased difficulty walking, talking, swallowing, or completing daily activities. They may also experience depression, anxiety, sleep disturbances, cognitive problems, mental health problems and/or impulse control problems. As a consequence, the role of the caregiver progresses and becomes more demanding, and will require the caregiverwhether a spouse or family memberto anticipate, recognize, and navigate new challenges. The more educated and prepared you are as a caregiver, the more successful you will be at overcoming the various challenges associated with your loved ones disease.
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What Is Parkinsons Disease
Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.
Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.
What Does This Mean For Me
It is possible to live well with PD despite the physical and/or cognitive changes that come with the disease progression. PD is often considered a family disease because of the effect it may have on the persons family and friends. Being a Caregiver is an important role and most often performed by the spouse, or an adult child. In the early and middle stages of the disease, the role is often described as a partnership. The care partner and the person with PD have a dynamic relationship as both adjust to sharing duties and working together. In the later stages of the disease, caring for someone with PD may become physically and emotionally draining. It is important for Caregivers to remember that it is okay to ask for help, and to acknowledge that one person cannot do it alone. Caregivers often feel empowered and supported by staying engaged in social activities, building a strong backup team, and attending support groups.
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How Might Caregiving Affect My Mental Health
Caring for someone with Parkinsons disease can be stressful and time consuming. It can also have profound effects on your mental health.
About 40 to 70 percent of general caregivers experience significant stress. Half of these caretakers also meet the official criteria for depression.
The challenge of caregiving increases as the disease gets more severe. The more care the person needs, the more of a load the caregiver has to bear, and the more it impacts their mental health,
Be Honest With Each Other
A trap some caregiver-patient partners can get into is one person becoming the nurse while the other is demoted to helpless patient. Thats not productive and can end up being harmful if, for example, the caregiver takes on responsibilities that the person with Parkinsons is perfectly capable of doing.
As a caregiver, try to start an open dialogue for tough conversations with your loved one where you come to an agreement about when the loved one truly needs help.
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Dont focus on the what-ifs. Theyll defeat you most every time. Do focus on now. It may seem like a tremendous struggle at the moment, but things could be worse. Today may be one of the harder days, but when the clock strikes 12, its a new day. Something wonderful could be ahead, waiting to happen. Your patient may turn into a pumpkin! Dont lose hope.
If you dont have one already, get a sense of humor. Without one, youll often despair. Find something funny in every day. You need to laugh.
Get yourself into a support group locally or online. You may not think you need it, but you do. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
You need your friends. Dont alienate them by thinking you can do this by yourself. Accept their invitations to help. Accept an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, or cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may see your need better than you can.
Try to think ahead. Your loved ones mental faculties may not be so great anymore. A daily schedule may be useful, with a reminder for doctors appointments, visitors, special occasions, etc.
Treatments To Manage The Symptoms
As mentioned, there are no cures for this. The treatments help to manage the condition, controlling symptoms and preventing complications. Many of the symptoms start off orally but there may be surgical treatments later. Your doctor will also likely encourage you to change your lifestyle to help manage the levels of dopamine naturally in your brain and encourage some speech therapy and other therapy to manage the side effects of the symptoms.
Medication is one of the most common treatments offered. Your doctor will want to help manage the dopamine levels, but its not possible to give dopamine directly since it needs to get to your brain and that isnt possible through medications. You need to use medications that help to encourage the brain to make more naturally.
Continual monitoring will be needed, as the body can get used to the medication levels. Doctors will need to adjust medications to ensure they always work.
Carbidopa-levodopa is the most common medication used and not just for diagnosis. Its highly effective and is a natural chemical that is converted to dopamine within the brain. The medication is two components joined together to help prevent premature conversion outside the brain to ensure proper treatment. You may experience some dizziness from the treatment, due to low blood pressure. Unfortunately, the dosage will need to be increased over time and high levels may have the opposite effect on your symptoms.
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