Build A Good Relationship
Caring for a loved one with Parkinsons can place a great deal of stress on your relationship. A person you love is changing both physically and mentally, and both of you are needing to adapt.
The Michael J. Fox Foundation recommends keeping communication as open as possible and being flexible with your changing roles. Be aware that some changes, such as new apathy or irritability, is not directed personally at you.
If both you and your loved one are willing, consider consulting a therapist together. You can work through any of the anger, denial, or upset you are feeling, and find ways to keep your relationship healthy and loving.
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.
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.
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Case Management And Counseling
Our Social Work services can make a big difference for caregivers. Whether you need help finding the right home health agency, a listening ear on a hard day, or a family meeting to discuss how kids and parents can work together to provide care, call on us! Our experienced Social Work staff have the flexibility and expertise to help ease the many concerns that can come up on along the way. By offering these services for free, we eliminate barriers to all who need these important services.
Surgery And Deep Brain Stimulation
Deep brain stimulation is a treatment for Parkinsonâs disease that uses an implantable pacemaker-like device to deliver electrical pulses to parts of the brain involved in movement. The DBS system consists of leads precisely inserted into a specific brain target, the neurostimulator implanted in the chest, and extension wires that connect the leads to the neurostimulator. Though implantation of the system requires a neurosurgical procedure, the treatment itself consists of long-term electrical stimulation. Advantages of DBS include its ability to reduce the high doses of medications , its adjustability , and its reversibility DBS was approved by the Food and Drug Administration as a treatment for PD in 2002 and according to Medtronic , more than 80,000 patients have undergone DBS surgery worldwide.
Typical candidates are those who have motor fluctuations or periods of âoffâ time with troublesome symptoms alternating with periods of âonâ time with good symptom control, and also with possible periods of excessive movement .
Not all patients with Parkinsonâs disease are good candidates for treatment with DBS. Approximately 10â20% of patients considered for possible treatment with DBS include those:
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The Progression Of Caregiving In Pd
The role of the caregiver in Parkinsons disease is ever changing, with the demands increasing as the disease progresses and symptoms worsen. In the early stages of the disease, caregivers are helping their loved one cope with the diagnosis and learning how to manage the medications. Caregivers may encourage and support their loved one in completing daily physical therapy exercises and assist them due to their slowness in movement.4
As an individuals disease progresses into mid-stage, the caregivers duties and burden significantly increase. Fatigue and excessive daytime sleepiness may derail daily plans, and frustrations around communication increase.1
In the late stage of PD, caregivers face significant responsibility and challenges. Their loved one may have significant mobility impairments, and caregivers often provide much hands-on assistance. Many people with late stage PD experience freezing episodes, sudden but temporary inability to move. Freezing episodes can contribute to falls, and fall prevention is important in the late stage of PD. Many assistive devices are available to help people with late stage PD with eating, dressing, and walking. Late stage PD may also mean changes to the way a person thinks, including forgetfulness, confusion, and sometimes, dementia. It is important to remember that not everyone experiences all the symptoms of PD, and the role of the caregiver will also vary based on the needs of their loved one.1
Develop A Support Group
Caring for a loved one can be deeply satisfying. Its a chance for your family to draw together as you face the challenges of Parkinsons disease head-on.
However, providing emotional and physical care for someone with an illness can become stressful and, at times, overwhelming. Balancing your personal life with caregiving can be difficult. Many caregivers will face periods of feeling guilty, angry, and abandoned.
Of course, you dont have to experience this alone. Support from other family members or professionals can help:
- relieve stress
- reevaluate approaches to treatment
- offer new perspective on the caregiving relationship
Ask your doctor or your local hospitals health outreach office for contact information for a Parkinsons disease caregiving group. The person youre caring for will likely also benefit from being part of a support group.
Support groups allow for open communication with other people facing the same struggles. These groups also provide an opportunity to share suggestions, ideas, and tips among the group members.
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Modify The Daily Routine Where Necessary
Once a daily routine is instilled, be prepared to adapt to changes along the way, as your loved ones condition evolves over time. Here are some things to look out for when helping your loved one with activities of daily living:
- Take time when helping your loved one out of bed as sudden changes in blood pressure may make them prone to light-headedness
- Prop up your loved ones sleeping position by at least 30 degrees using pillows or an adjustable bed
- Make grooming and personal hygiene easy by providing an electric toothbrush, or electric shaver, especially if your loved ones hands are stiff
- Prepare anti-slip bath mats and avoid bath tubs
- Use a shower stool or install a grab bar to prevent falls
- Provide a bathrobe to make drying off after showers easier
- Replace buttons on clothes with velcro or elastic waistbands to make it easier for your loved one to dress themselves, and lay out clothes ahead of time
Pill boxes are an effective way to manage daily medication doses
Related Diagnosis: Lewy Body Dementia
Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.
In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.
This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.
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Meal Preparation And Nutrition
Eating a healthy diet is important for those with Parkinsons disease. A clean and nutrient dense diet is critical because it helps strengthen muscles and bones while reducing muscle atrophy and excess fat accumulation. Home Care Assistance can help prepare healthy meals that will provide your loved one the nutrition he or she needs to maintain optimal health and vitality in his or her later years.
When And Where Can I Find Help
Support is a central and protective element that helps overcome daily challenges. Start identifying the people around you and the healthcare system or community resources that can help you.
Ideally, you should start building your support system as soon as you learn about the diagnosis. You may not need help immediately but finding resources will be easier now than the day you become overwhelmed.
If you feel like you can no longer cope with the exhaustion, take a break and let others take care of your loved one. Not everything will be done according to your requirements and methods, but you must learn to let go of certain things so that your health does not suffer.
Asking for help may seem difficult at first but remember that it is neither a sign of weakness nor abandonment of your loved one.
Parkinson Québecs toll-free, bilingual and confidential information and referral line is open Monday to Friday, from 8:30 am to 4:30 pm.
LAppui also offers an information service for caregivers, 7 days a week, from 8:00 am to 8:00 pm. You can reach them by phone at 1 855 852-7784 or by email at [email protected]. A resource directory for caregivers is also available on their website.
Ask those around you for help
Involve family and friends by discussing care options if you are not available or in the case of an emergency.
Create a list of professionals and caregivers in your support system
Open a file at the CLSC
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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.
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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Social Security Disability Insurance
SSDI, often referred to as simply Disability, is assistance intended for those individuals who are of working age and cannot work as a direct result of their medical condition. The SSA does not provide care assistance but instead provides financial assistance that can be used for care. To be eligible one must both have a written diagnosis of Parkinsons Disease and have earned monthly income of less than approximately $1,000.
Zoom Session Parkinsons Caregiver Support Group
While these sessions will not occur in-person, Theresa Stern, Neuroscience Institute Director, is available by phone and email to offer you support and guidance at 378-5022 or . Thank you for your understanding as we observe a period of social distancing to ensure everyones health and well-being.
Designed to help caregivers come to a better understanding of Parkinsons disease, participants learn tools for providing care, communicating with loved ones and taking better care of themselves. It also provides the opportunity to discuss questions and concerns with listeners who share their experiences. For more information, please call 378-5022.
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Discuss Openly With Your Loved One
Together, you can develop strategies to implement them according to the stages of the disease. This will help you maintain the health and quality of life of you and your loved one. Having a game plan can help you maintain your energy to enjoy the good moments with your loved one.
Remember that even though you are there to help them, your loved one wants to maintain their independence and find ways to meet certain needs on their own.
Keep a positive attitude
Symptoms of Parkinsons disease are unpredictable and different for everyone. The physical and mental state of your loved one can change greatly from one day to another depending on medication effectiveness. Some activities, events or travel plans will likely be cancelled or postponed, but your attitude can have a significant impact on how you feel. Focus on what the person with the disease is capable of doing rather than what they cannot do.
Enjoy life and create good memories. The ones you were used to may be less frequent, but you have the opportunity to create new and different enjoyable moments.
Advice For Parkinsons Care Partners
In this 24-minute podcast, Kelsey Phinney inverviews her mom, Connie Carpenter Phinney, about being a Parkinsons care partner for over 18 years. Kelsey asks Connie several questions, including how Davis was diagnosed how the couple told their young children how life changed for their family how Connie cares for herself and communicates her needs to Davis what household changes were made for safety the well-being of both Connie and Davis how to cope with the good days and bad days and how Connie and Davis care for their marriage, despite Parkinsons.
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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.
Hire Outside Help If You Need It
At some point, you may feel that both you and your support network are stretched thin. Youre tired, and you dont feel comfortable asking friends and family to pick up the slack.
But the yard really needs upkeep. And the house isnt as clean as it should be. And suddenly, it seems, youre totally out of food, as well as the energy to go grocery shopping.
Hiring a gardener, a house cleaner, or a grocery delivery service can help if this is an option for you. Your physical well-being will thank you for it.
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Caregiving For People Living With Parkinsons
Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Former caregivers of a loved one with PD suggest doing the following : Get prepared, Take care of yourself, Get help , Work to maintain a good relationship with your loved one, and Encourage the person with PD for whom you care, to stay active.
Preparing for caregiving starts with education. Reading this fact sheet is a good start. More resources are available to you in theResources section of this fact sheet. Early Parkinsonâs disease usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.