Continuing Care Retirement Communities
Continuing care retirement communities are another good option for individuals with Parkinson’s disease, however, CCRCs may have fairly high monthly costs as well as a steep admission fee so these facilities are usually best suited for individuals who have ample finances.
The significant benefit to CCRCs is that they offer different levels of care in one facility or on one campus. Some CCRCs offer assisted living, skilled nursing facility care, memory care, and nursing home care all in one location. When an individual becomes a resident of a CCRC, they are able to move between different levels of care as their needs change without having to move to a different facility.
This can be very beneficial for all seniors but particularly for people with Parkinson’s disease who often have some cognitive and emotional impairment. In addition, it can be helpful to have staff who get to know the resident well and their specific preferences and needs during the time they live in the CCRC.
Caregiving For A Person With Parkinson’s Disease
Here at Out-Thinking Parkinson’s, it is our mission to help not only People with Parkinson’s, but also the people who love and care for them and anyone who has their own lives indirectly touched by the disease.
One of the most valuable contributions we can make, we feel, is to express and describe the feelings and thoughts of what it is like to be a person affected by Parkinson’s. We hope this humanization of PD will help others in the same situation come to terms with living with the disease and bring new understandings for the wider community too.
In this post, I would like to share my own insights in to how to care for someone with Parkinson’s from the “insiders” point of view. Let me state clearly at the outset, for this is very important, here and throughout, I do not use the word “care” in the connotation of “carer” but in terms of the care of lovers, family and friends.
Advice For Care Partners
Being a care partner can sometimes be challenging, but having a care partner is essential to the well-being of every person with Parkinsons. Here are three areas to focus on as you adjust to your new role as a care partner while maintaining a healthy and supportive relationship with your loved one.
Managing Your Loved One’s Care
Even though care partners do not need special medical training, they play a central role in the medical care of people with PD. Accompany your loved one to doctor’s appointments, with their permission. You can offer an outside view on how the person with Parkinson’s has been doing in the interim since the last visit. You may also recognize new symptoms or subtle changes that the person with Parkinson’s doesn’t, such as changes in mood or behaviors, withdrawal from social interaction, or speech that has become softer or more monotone.
When you and your care partner attend appointments together, you both hear what the doctor has to say. You can compare notes afterword and together discuss management options offered. And, you can both be clear on the treatment plan.
Keeping track of all the details associated with medical care can be overwhelming. Here are some tips to help:
Parkinson’s and Your Relationship
If you feel comfortable doing so, visit a counselor or therapist together or individually to work through the many changes and emotions you are experiencing and to learn how you can have a healthy and supportive relationship.
Caring for Yourself
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Costs Of Our Parkinsons Home Care
The cost of care for people living with Parkinsons and advanced neurological conditions will be typically higher, as it is a specialist care at home service.
It is worth considering however that live-in care is often cheaper than the total cost of domiciliary care for people living with Parkinsons. When a person is receiving hourly care, provided by a domiciliary care provider it is likely that you will be charged extras for additional services to support the persons Parkinsons needs on top of the cost of a carer visiting. These extras add up and can become costly over time. The total cost to provide hourly care to someone living with high or complex needs can sometimes exceed the price of an inclusive live-in care service.
Parkinsons care at home is typically in line with and sometimes less than what you would pay for residential care, with the added benefit of receiving one-to-one tailored care for the person living with Parkinsons, which simply cannot be achieved in a care home.
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
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Is Parkinsons Disease Inherited
Scientists have discovered gene mutations that are associated with Parkinsons disease.
There is some belief that some cases of early-onset Parkinsons disease disease starting before age 50 may be inherited. Scientists identified a gene mutation in people with Parkinsons disease whose brains contain Lewy bodies, which are clumps of the protein alpha-synuclein. Scientists are trying to understand the function of this protein and its relationship to genetic mutations that are sometimes seen in Parkinsons disease and in people with a type of dementia called Lewy body dementia.
Several other gene mutations have been found to play a role in Parkinsons disease. Mutations in these genes cause abnormal cell functioning, which affects the nerve cells ability to release dopamine and causes nerve cell death. Researchers are still trying to discover what causes these genes to mutate in order to understand how gene mutations influence the development of Parkinsons disease.
Scientists think that about 10% to 15% of persons with Parkinsons disease may have a genetic mutation that predisposes them to development of the disease. There are also environmental factors involved that are not fully understood.
S For Caring For A Person With Parkinsons Dementia
Parkinsons disease is known for its associated motor symptoms, such as tremor and slowed movement. People can be surprised to learn that cognitive changes are among common PD non-motor symptoms. Significant cognitive impairment can impact care partners, too. Education and healthy coping strategies ensure everyones best care.
The following article is based on a Parkinsons Foundation Expert Briefings webinar exploring care partner strategies to identify and help people with PD dementia, hosted by Joseph Quinn, MD, a neurologist at Parkinsons Foundation Center of Excellence Oregon Health & Science University and the Portland VA Medical Center. Dr. Quinn, the Parkinsons Center director for both institutions, focuses his research on cognitive decline prevention and dementia treatment.
What is PD Dementia?
Mild cognitive impairment is very common with Parkinsons disease. It can impact memory and thinking but doesnt always affect daily activities. Dementia, however, is when cognitive changes impact daily living. Dementia may or may not occur in people with PD. According to recent research, 30 percent of people with Parkinsons do not develop dementia as part of the disease progression.
The different types of dementia include:
Parkinsons Disease Dementia and Lewy Body Dementia Family Checklist
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Simplifying Activities Of Daily Living For Parkinsons Patients
Many aspects of daily life that we take for granted become increasingly difficult for someone who is living with Parkinsons. Movement symptoms like weakness, tremor, rigidity, balance problems and bradykinesia become especially pronounced in the middle and later stages of the disease. Medications used to treat PD, such as carbidopa-levodopa, dopamine agonists, MAO B inhibitors and anticholinergics, can also have bothersome side effects like dyskinesia , lightheadedness, drowsiness, hallucinations and confusion that interfere with daily routines. Fortunately, there are assistive devices and adaptations that can help patients maintain their quality of life and make caring for someone with Parkinsons easier for family caregivers.
Challenges You As A Caregiver Are Likely To Face
There are challenges that a person with Parkinson’s disease confronts. First, the disease can vary from day to day. There will be times when they can function almost normally and then other times when they will be very dependent. This is a natural part of the disease. But it can make a caregiver feel that the person is being unnecessarily demanding or manipulative. Keep in mind that Parkinson’s is unpredictable and each day can pose new challenges for you and your loved one.
Also, keep in mind that Parkinson’s is a progressive disorder. While medications and surgery can provide significant relief of symptoms, they do not stop the progression of the disease.
Depression is also very much a part of the disease. It is important to recognize the signs and symptoms of depression so you can help your loved one seek treatment promptly. And, if you are feeling depressed and having trouble coping, it’s just as important to get care for yourself.
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What Causes Parkinsons Disease
Parkinsons disease occurs when nerve cells in an area of the brain called the substantia nigra become impaired or die. These cells normally produce dopamine, a chemical that helps the cells of the brain communicate . When these nerve cells become impaired or die, they produce less dopamine. Dopamine is especially important for the operation of another area of the brain called the basal ganglia. This area of the brain is responsible for organizing the brains commands for body movement. The loss of dopamine causes the movement symptoms seen in people with Parkinsons disease.
People with Parkinsons disease also lose another neurotransmitter called norepinephrine. This chemical is needed for proper functioning of the sympathetic nervous system. This system controls some of the bodys autonomic functions such as digestion, heart rate, blood pressure and breathing. Loss of norepinephrine causes some of the non-movement-related symptoms of Parkinsons disease.
Scientists arent sure what causes the neurons that produce these neurotransmitter chemicals to die.
Take Care Of Yourself
Probably one of the most important, and sometimes difficult, things caregivers can do is to take care of themselves. This includes maintaining mental and physical health by making and keeping your own medical and dental appointments. As a caregiver, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem. Join a support group for caregivers if possible. Support groups help you meet people who are going through what you are going though, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humor.
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What Does Our Parkinsons Care Include
Specialist nurse-led Parkinsons home care
Importantly for those living with Parkinsons, we provide nurse-led care which means our professional carers are trained to monitor and identify any changes in your health, responding appropriately and avoiding any unnecessary hospital admissions. As part of our commitment to delivering a high-quality home care service, we monitor and measure health outcomes to ensure we continually improve the care we provide.
Managing and administering medications
Our professional Parkinsons carers are trained in medications management and use an electronic medications system to ensure all medications are managed proactively and effectively. They will also collect prescriptions from the pharmacy. They will also collect prescriptions from the pharmacy.
Ensuring safe mobility in and around the home
We have an in-house Occupational Therapist, Jackie Cooper who will provide expert guidance and advice as to what equipment can improve safe movement and mobility around your home, whilst minimising falls. Jackie is well placed to provide advice and recommendations as to any home adaptations that may make life easier.
Companionship as and when you need it
Our carers will provide companionship whilst ensuring your privacy is respected. We ensure that a perfectly matched carer shares similar values and interests as you to make life interesting, stimulating and enjoyable, whilst being there for you to support your emotional and psychological needs.
Parkinsons Home Care Services Live In Care Short Term Care Or Respite Care
We provide specialist Parkinsons disease home care as either 24 hour live-in care, as a short term care arrangement or as respite care.
With a full time, live in care arrangement our professional Parkinsons carers will live with you in your home providing around the clock care and support, focused on improving your health and wellbeing, whilst enhancing the quality of your life. There are many benefits of 24 hour care, not least that the carer will truly get to know you as a person, not just your care needs but they will be on hand to support you to live life the way you wish, with as much independence as possible.
Respite care or a short term arrangement provide an opportunity for a family carer to take a much needed break from caring for someone living with Parkinsons, or for you to try live-in care for the first time to see how live-in care works and whether it is the right choice foryou in the future.
CASE STUDY: How live in care improved Arthur to live well with Parkinsons disease care
My father Arthur is 76 and lives in North London with my mother, Maisie. He has Parkinsons and needs quite a bit of help every day to get up and dressed, eat good meals, take his pills and get out and about.
Best of all they were matched to my father perfectly. They both loved their motorsport my father spent most of his working life in that industry so there was plenty of common ground between them.
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Difficulties With Instrumental Activities Of Daily Living
Instrumental activities of daily living include common daily tasks such as housekeeping, preparing meals, doing laundry, managing ones finances, running errands, and attending appointments. Because of cognitive and muscle impairment with Parkinson’s disease, a person may find they are unable to perform their IADLs as the disease progresses and therefore need help.
How Is Parkinsons Disease Treated
There is no cure for Parkinsons disease. However, medications and other treatments can help relieve some of your symptoms. Exercise can help your Parkinsons symptoms significantly. In addition, physical therapy, occupational therapy and speech-language therapy can help with walking and balance problems, eating and swallowing challenges and speech problems. Surgery is an option for some patients.
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Difficulties With Activities Of Daily Living
ADLs refer to basic personal care tasks including bathing, dressing, eating, mobilizing, and toileting.
Individuals with Parkinson’s disease may have problems with mobilizing, freezing in place, bathing, grooming, toileting, dressing, eating, driving, travelling, as well as safety at home. A person has more difficulty performing these ADLs as the disease progresses due to increased muscle and cognitive impairment.
It can be hard to for individuals to adjust to these changes but there are ways to provide support and to promote as much independence and quality of life as possible.
What Are The Different Stages Of Parkinsons Disease
Each person with Parkinsons disease experiences symptoms in in their own unique way. Not everyone experiences all symptoms of Parkinsons disease. You may not experience symptoms in the same order as others. Some people may have mild symptoms others may have intense symptoms. How quickly symptoms worsen also varies from individual to individual and is difficult to impossible to predict at the outset.
In general, the disease progresses from early stage to mid-stage to mid-late-stage to advanced stage. This is what typically occurs during each of these stages:
Early stage
Early symptoms of Parkinsons disease are usually mild and typically occur slowly and do not interfere with daily activities. Sometimes early symptoms are not easy to detect or you may think early symptoms are simply normal signs of aging. You may have fatigue or a general sense of uneasiness. You may feel a slight tremor or have difficulty standing.
Often, a family member or friend notices some of the subtle signs before you do. They may notice things like body stiffness or lack of normal movement slow or small handwriting, lack of expression in your face, or difficulty getting out of a chair.
Mid stage
Mid-late stage
Standing and walking are becoming more difficult and may require assistance with a walker. You may need full time help to continue to live at home.
Advanced stage
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The Ghost In The Machine
The most important action you can take in caring for a Person with Parkinson’s is simply to see past the disease, because we are still whole, complete, human beings and most importantly we need to be seen for who we are. Please do not see or treat us for less than we were, somehow smaller people, but for who we still are inside. The only thing which can truly diminish us is if the disease is allowed by others to perpetually cast a shroud over us, to mask our human natures.
We are neither ghosts, nor shadows of our former selves, nor specters fading into darkness. The best friends in my life all see me – that’s how I know them as best friends. When they look upon me, they see straight through the Parkinson’s Disease for what it is, penetrating to the heart of me. They have little regard for the disease, pausing only momentarily with their gaze to see it for nothing more than a major inconvenience, one of the things that nature and life throws at us.
It is most important that you neither name, think of or treat a Person with Parkinson’s as a patient, a sufferer or the disabled, but as an individual fully alive human being in their own right. Remember it is Parkinson’s itself which is the dark shadow, but please help to make it only a thin veil.
I would perhaps summarize my message with this:
We are not the ghosts. We simply have a ghost in our machine – a glitch in the system.