Care For The Caregiver
Research has shown that as PD progresses, the strain on the care partner or caregiver also increases. While the caregiver is generally focused on providing assistance and support to the person with Parkinsons disease , the caregiver also needs support. Taking time away from caregiving duties, maintaining social connections, and asking for help from others are important steps to help the caregiver cope with their additional responsibilities and stress.1,4
A Care Partner’s Role
When a person is diagnosed with Parkinsons disease , someone who is close them whether their spouse, child, parent or friend usually becomes their primary care partner.
Care partners take on many responsibilities, from accompanying a loved one to doctor appointments to managing more household responsibilities. For the most part, care partners do not need special medical training. Whats important is establishing a partnership a mutual understanding of what kind of help with daily tasks and emotional support the person with Parkinsons wants and needs as the disease impacts your routines and lives.
Its essential, too, for care partners to take care of themselves. Parkinsons progresses slowly, and the role of the care partner can last for decades. Care partners need to take time out to renew their energy and stay healthy.
In our free guide You, Your Loved One and Parkinson’s Disease, Lonnie Ali, wife of Muhammad Ali and member of The Michael J. Fox Foundation Founders Council, offers guidance for fellow Parkinson’s disease caregivers.
Add Medication For A Winning Combo
Diet and exercise are important for managing PD, but dont forget about medications. Take them regularly and exactly as your doctor prescribes.
If you tend to forget your medication, set an alarm to remind you. You can also use a pillbox thats labeled with days and times of day. Take your meds on a set schedule, dont skip doses and dont double dose, says Dr. Gostkowski. When youre diligent about taking your medications and following a healthy lifestyle, youll feel your best.
Who Is Suitable For Parkinsons Care At Home
Parkinsons Care can support anyone with Parkinsons disease who struggling with symptoms, finding it difficult to manage independently and wanting to continue livingin their home.
Parkinsons can present challenges. If your loved one is living with advanced Parkinsons disease, moving around, getting out and about, doing household chores and lookingafter themselves can all be a struggle without assistance. However, with the right care support and treatment, life can still be enjoyable, comfortable and satisfying.
Integrated Parkinson Care Network: Pilot Testing Of The Feasibility And Impact Of An Integrated Care Network For Different Stages Of Parkinson’s Disease
As Canadas population ages, more people are living with Parkinsons disease. Given a limited number of neurologists located mainly in big cities, people will have to manage the symptoms of their chronic and progressive illness between infrequent visits to specialists.
Dr. Deepa Dash, a neurologist, has a two-year clinical fellowship in movement disorders at The Ottawa Hospital and the Ottawa Hospital Research Institute. Shes testing the effectiveness of creating an integrated care network for about 50 people in the intermediate stages of Parkinsons between two and eight years after diagnosis.
The network, managed by a nurse who specializes in Parkinsons disease, will connect people to local resources. Working with the nurse, people will identify the top issues that concern them, and develop an individual plan to address those priorities.
People dont usually think about what their top three priorities are and how they will deal with those problems, says Dash. Sitting with them and making a plan often helps.
Using a combination of internet and print resources, apps, and community programs like exercise classes or speech therapy, the nurse who is the clinical care integrator will help people with Parkinsons and their family members to enact the plan.
People should be empowered to manage their own health.
Deepa hopes belonging to the network will improve members overall health.
People should be empowered to manage their own health, she says.
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Caring For Someone With Parkinsons Disease
Parkinsons disease, like any chronic disease, affects families as well as individuals.
Close family members often take on the role of caregiver as the disease progresses and, in many ways, are as constrained as the person with Parkinsons disease. Carers can find themselves in a role that may increasingly isolate them from work, family and social activities as they dedicate themselves to care giving. While they may take on the role willingly, the fact is they too have suffered significant loss in terms of opportunities and the future they may have planned.
Carers need factual, credible information and support as much as the person afflicted by Parkinsons disease. They need someone to talk to about their feelings as much as they might need practical advice. Caring appropriately for someone doesnt always come naturally and carers may need to learn new skills. Communication and negotiation skills are particularly important in order to balance the needs of both carer and the person with Parkinsons disease. Carers also need to look after their own health by getting enough sleep and exercise and prioritising some time for themselves.
Parkinsons NSW can help with all this by providing information about the disease, counselling and access to support groups. Please call the InfoLine on 1800 644 189
What Are The Benefits Of Parkinsons Care
Parkinsons home care can provide the support your loved one needs to continue living safely and independently in their own home. Parkinsons causes progressivedamage to the brain, which leads to increasing effects on mobility, motor skills, mental function and emotional wellbeing. For people who dont want to move into acare home, specialist carers can provide regular drop-in support or live-in care Parkinson’s care and supervision twenty-four hours a day.
Parkinsons care benefits include mobility support – Body movements become slower in people with Parkinsons and may be less coordinated. This affects mobility, with individuals taking small, slow steps and shuffling when they walk. Carers can support mobility and ensure walking aides are close at hand.
People with Parkinsons can have an impaired ability to balance, making them prone to falls and injuries. Parkinsons carers can support safe mobilisation and reduce the risk of falls.
Support with hygiene and personal care
Tremor can make it difficult to perform fine movements, making self-care a challenge. Parkinsons carers will providesensitive, discreet support when needed, to maintain hygiene and grooming.
Supervision of medication
Being in comfortable, familiar surroundings can improve symptoms and function in people with Parkinsons and Parkinsons dementia.
Home help and personal assistance
Carers can lend a hand with chores to make life a little bit easier.
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Advice For Nursing Care
People with Parkinsons have specific needs and care requirements. Most important is that they receive their medication on time, every time. Nurses should also be aware of the on/off nature of the condition.
Some patients say they are on when their drugs are working and symptoms are mostly under control. If they go off, their symptoms are not under control and it becomes harder for them to move some may stop moving altogether. Patients might change from on to off very quickly, like a switch.
The way in which Parkinsons affects patients can vary from hour to hour and day to day, and it also varies widely between individual patients. The amount of help and support they need also varies. Nurses should therefore listen to patients and their families about how the condition affects them.
It is important to ensure that patients have access to a varied and balanced diet nurses should take account of any swallowing or movement problems that could lead to malnutrition. It is also important to remember to give patients time to answer when talking to them. It may take them time to respond, but this does not mean they are not listening or do not understand.
Features Of Individual Spaces
- Are different sizes and types of units available?
- Are units for single and double occupancy available?
- Do residents have their own lockable doors?
- Is a 24-hour emergency response system accessible from the unit?
- Are bathrooms private? Do they accommodate wheelchairs and walkers?
- Can residents bring their own furnishings? What may they bring?
- Do all units have a telephone and cable television? How is billing handled for these services?
- Is a kitchen area/unit provided with a refrigerator, sink, and cooking element?
- May residents keep food in their units?
- May residents smoke in their units? May they smoke in public areas?
Help Them Feel Normal
A disease like Parkinsons can interfere with the normalcy of someones life. Because people may focus so much on the disease and its symptoms, your loved one may start to lose their sense of self. When you talk to your loved one, dont constantly remind them that they have a chronic disease. Talk about other things like their favorite new movie or book.
Be Realistic About Your Experiences And Needs
- Friends and family members who have infrequent contact with the person with Parkinsons often underestimate the severity of symptoms as well as your level of caregiver burden. At the same time, they might be able to help identify serious changes in the persons status that you did not notice because things progress gradually over time.
- Providing physical care to someone with advanced PD, such as re-positioning or helping with bathing, can be exhausting and even cause physical injury to the caregiver.
- Caregivers focus on loved ones, but need to remember to care for themselves. This includes building a support network, recognizing stressors and reaching out for help or a break, when needed.
- To order free caregiver resources or speak with PD specialists, call the Parkinsons Foundation Helpline at 1-800-4PD-INFO .
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Other Mental Health Problems Linked To Parkinson’s
A hallucination happens when you think something is present when it isn’t. For example, you may hear a voice but no one is there. An example of paranoia is when you think someone is following you when they are not. A delusion is when you are convinced something is true, despite clear evidence that proves it’s not.
Right At Homes Trained Care Experts Can Help
If you are one of the 1 million Americans with this chronic condition, you know that symptoms generally develop slowly over the years. Our goal is to be there for you as the disease progresses, providing as much or as little care as needed. Right at Homes specialized home care teams know just how to work with the muscle stiffness and tremors to help prevent frustration and falls. We also help individuals with Parkinsons disease stand strong with these beneficial caregiving services:
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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.
Maintaining Independence In Daily Tasks
In addition to impaired mobility, Parkinsons can make seemingly simple tasks like brushing teeth and eating very difficult. But staying as independent as possible is important for your older adults self-esteem and well-being.
Assistive devices like dressing aids, shower chairs, and reacher grabbers can allow older adults to accomplish more tasks on their own. Plus, there are products that are designed specifically for Parkinsons that counteract symptoms like tremors and contracture. For example, spoons for people with Parkinsons are specially designed to make feeding oneself easier and less messy.
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Coping With Cognitive Changes And Parkinsons
Cognitive decline and behavioral changes often occur in the middle and late stages of Parkinsons disease. Caregivers must be particularly understanding and flexible when loved ones begin experiencing changes in memory and thinking. A PD patient may have trouble with planning, problem-solving, multitasking and spatial reasoning, which can make daily activities frustrating, impossible or even dangerous. Its important to encourage independence but remain focused on ensuring their safety.
Changes in a loved ones brain may also affect their ability to communicate. Approximately 89 percent of people diagnosed with Parkinsons disease also have some type of progressive motor speech disorder. A PD patients voice may become softer or hoarser, they may have difficulty finding words, or their speech may become slurred. Working with a speech therapist can help an elder maintain their communication skills and confidence in social settings. Continue to encourage open communication, minimize distractions, and allow more time for responses as well as verbalized requests.
Communicating With Your Loved One
Parkinson’s disease can make verbal communication very difficult for your loved one. That can get in the way of your ability to care for their needs. Here are some ways that can help you better understand your loved one.
- Talk to your loved one face-to-face. Look at them as they are speaking.
- In the case of advanced disease, ask questions that your loved one can answer “yes” or “no.”
- Repeat the part of the sentence that you understood.
- Ask your loved one to repeat what they have said, or ask them to speak slower or spell out the words that you did not understand.
National Parkinson Foundation: “Caring for Someone with PD” and “For Those Who care For People With Parkinson’s.”
PDCaregiver.org: “Welcome to Care – for CareGivers of People with Parkinson’s.”
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How Your Support Made This Research Project Possible
You have a lot of research, but sometimes it doesnt translate into peoples lives, says Dash. Thats why she wants to connect people to local programs and resources that can put what we know about Parkinsons disease into practice.
She also believes its critical to evaluate this clinical care network to see whether its feasible and improves quality of life.
Unless we have proved its efficacy, we cannot expect it to be used as a standard of care, she says.
The fellowship is a very important milestone for me because it helps me not only pursue my clinical fellowship and do research, Im going to learn how to do health economic analysis which can help guide policy.
What Are The Signs Of Depression
Depression can sometimes make your Parkinson’s symptoms worse. Get in touch with your doctor if you notice any of these things happening to you for longer than 2 weeks at a time.
- You have a depressed mood.
- You can’t find pleasure in things that you once enjoyed.
- You have trouble getting to sleep or you sleep too much.
- Your appetite changes.
- You have thoughts of death.
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How Do You Treat Depression In Parkinson’s Disease
There are many antidepressant medications, and each has pros and cons. Which one your doctor suggests depends on your overall condition and specific needs.
Most people should not take amoxapine because it could temporarily make Parkinson’s symptoms worse.
Psychological therapy can help you rebuild your sense of self-worth. It also can help you keep up good relationships with your caregivers and family members.
How Can I Know What Services I Need
If you have Parkinson’s disease, talk with your family and caregivers about what services you need. Take time to consider what services are important to you before you visit assisted living communities. This step will help ease your transition. Think about these questions:
- Why do I want/need to change my living arrangements?
- What daily activities do I need help with ?
- How often do I need help?
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Bathing And Personal Care Tips
For someone with Parkinsons disease, showering is typically preferred to taking baths because getting in and out of the tub becomes increasingly difficult. However, some people with PD may eventually experience changes in the brain that affect memory, judgement and focus. The Alzheimers Association estimates that 50 to 80 percent of Parkinsons patients experience these and other symptoms of dementia. Individuals living with Parkinsons disease dementia and Lewy body dementia may benefit from some adaptations, assistive devices and caregiving techniques that are used in dementia care.
For example, many dementia patients are confused or even frightened by the sound and feel of running water while showering. If your loved one requires assistance with bathing, be sure to give them time to adapt to the situation and understand what is happening. Gently talk them through the process, ensure they are warm and comfortable, and start by cleansing less sensitive areas of the body, such as the feet and hands, before proceeding to other areas.
Managing Parkinsons Freezing Episodes
As Parkinsons worsens over time, freezing episodes may happen. This is where your older adult will literally stop everything they are doing and be unable to move.
For example, they could be walking through a room, getting to a doorway, and then not be able to move forward through it. Freezing episodes are confusing and dangerous because they can lead to falls.
These tips and tricks help manage freezing episodes:
- Asking your older adult to shift weight from one leg to the other
- Putting on music, singing, or counting to help your loved one keep moving
- Placing tape on the floor at doorways your loved one commonly uses (a line made with tape, drawn with pencil, etc. can help the brain cue the legs to walk over something when they freeze
- Encouraging them to try a different type movement to get the body started, like raising a hand or turning their head
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