Complex Parkinson’s Disease And Palliative Care
Complex Parkinson’s disease is defined as the stage when treatment is unable to consistently control symptoms, or the person has developed uncontrollable jerky movements .
These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinson’s disease, under the supervision of a doctor with a specialist interest in Parkinson’s disease.
As Parkinson’s disease progresses, you’ll be invited to discuss the care you want with your healthcare team as you near the end of your life. This is known as palliative care.
When there’s no cure for an illness, palliative care tries to alleviate symptoms, and is also aimed at making the end of a person’s life as comfortable as possible.
This is done by attempting to relieve pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family.
Palliative care can be provided at home or in a hospice, residential home or hospital.
You may want to consider talking to your family and care team in advance about where you’d like to be treated and what care you wish to receive.
What To Expect When A Loved One Has Parkinsons Disease
Parkinsons disease is a progressive neurological disorder that causes a gradual loss of muscle control. Although the disorder generally occurs in elderly people, it is occasionally seen in younger adults. In fact, roughly 5-to-10% of all Parkinsons disease cases occur before the age of 50.
Parkinsons disease usually evolves in five distinct stages:
It is important to remember that Parkinsons disease affects each patient differently. While some may remain in Stage 1 for years, others advance quickly. Some people might even skip one more stage of disease progression entirely.
There is no cure for Parkinsons disease, but prescription medications, deep brain stimulation, and certain therapies will usually alleviate or lessen symptoms. A healthy diet and regular exercise can also help people with Parkinsons disease improve muscle strength and balance.
While Parkinsons disease itself is not fatal, its debilitating effects do increase the potential for deadly complications. Because swallowing issues may cause aspiration of food or liquids into their lungs, pneumonia is the most common cause of death among people with Parkinsons disease. Worsening mobility and balance problems also increase their risk for fatal falls.
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.
Recommended Reading: What Are Early Warning Signs Of Parkinson’s Disease
Energy Conserving Tips For Those With Parkinson’s Disease
- Simplify your tasks and set realistic goals. Don’t think you have to do things the same way you’ve always done them.
- Plan your activities ahead of time. Space them out throughout the day. Do not schedule too many things to do in one day. Do the things that take more energy when you are feeling your best.
- If needed, rest before and after activities.
- If you become tired during an activity, stop and rest. You may need to finish it on another day or when you feel less tired.
- Do not plan activities right after a meal. Rest 20-30 minutes after each meal.
- Ask for help. Divide the tasks among family and friends.
- Get a good night’s sleep and elevate your head when sleeping. Be careful not to nap too much during the day or you might not be able to sleep at night.
- If your doctor says it’s ok, you may climb steps. You may need to rest part of the way if you become tired. Try to arrange your activities so you do not have to climb up and down stairs many times during the day.
- Avoid extreme physical activity. Do not push, pull, or lift heavy objects that require you to strain.
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.
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?
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.
Read Also: Parkinson’s Heritability
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.
Home Safety Considerations For Parkinsons Disease
Mobility problems are common symptoms of Parkinsons disease, therefore maximizing the safety and accessibility of a patients home is a top priority. Since seniors with PD often use mobility aids like canes, walkers, rollators or wheelchairs, wide, clear pathways in rooms and hallways are important. The following home elements can make it difficult for a person with limited mobility to get around their home safely.
You May Like: How To Take Mannitol For Parkinson’s
What To Expect In The Late Stages Of Parkinsons Disease
- Stage Four of Parkinsons Disease In stage four, PD has progressed to a severely disabling disease. Patients with stage four PD may be able to walk and stand unassisted, but they are noticeably incapacitated. Many use a walker to help them. At this stage, the patient is unable to live an independent life and needs assistance with some activities of daily living. The necessity for help with daily living defines this stage. If the patient is still able to live alone, it is still defined as Stage Three.
- Stage Five of Parkinsons Disease Stage five is the most advanced and is characterized by an inability to arise from a chair or get out of bed without help. They may have a tendency to fall when standing or turning, and they may freeze or stumble when walking. Around-the-clock assistance is required at this stage to reduce the risk of falling and help the patient with all daily activities. At stage five, the patient may also experience hallucinations or delusions.1,2
How Do We Find The Right Nursing Home Facility
Finding the right nursing home takes time. It is important to begin the search for a suitable nursing home well before you will need to take the step of moving. There are often long waiting periods. Planning ahead can also make the transition of moving into a nursing home much easier.
Family and caregivers should talk about what services will be needed. Take time to consider what services are important to you before calling different nursing homes. Think about what kind of help is needed and how often it’s needed.
Before scheduling a visit to the nursing homes you are interested in, ask about vacancies, admission requirements, level of care provided, and participation in government-funded health insurance options.
Read Also: Can Parkinson’s Change Your Personality
Questions About Social And Recreational Activities
- Is there an activities program?
- Do residents participate in the neighboring community’s activities?
- Do volunteers, including family members, come into the residence to conduct or help with programs?
- Does the facility require residents to undertake any chores or perform specific activities that benefit all residents?
- Are residents’ pets allowed in the unit? Who is responsible for pet care?
- Does the residence have its own pets?
Being A Health Care Advocate
Part of being a care partner is helping get the patient to doctors appointments and taking part in the discussions with the doctor. Its often helpful to have two people listening to the doctors recommendations, as well as asking questions. Find a healthcare professional with whom you feel comfortable, and feel free to get a second opinion if you want additional options or a different course of treatment.1
What Types Of Care Do Nursing Homes Provide
There are two types of care provided by nursing homes:
- Basic care. This provides services that will help to maintain a person’s ability to carry out necessary daily functions, like personal care and getting around. They will also ensure that the person is supervised and safe.
- Skilled care. This is care that requires the services of a registered nurse for treatments and procedures on a regular basis. Skilled care also includes services provided by specially trained professionals, such as physical, occupational, and respiratory therapists.
Learn Everything You Can About The Disease
Parkinsons disease is a movement disorder. If youre a caregiver for someone living with Parkinsons, youre likely familiar with some of the symptoms of the disease. But do you know what causes its symptoms, how the condition progresses, or what treatments can help manage it? Also, Parkinsons doesnt manifest the same way in everyone.
To be the best ally for your loved one, learn as much as you can about Parkinsons disease. Do research on reputable websites like the Parkinsons Foundation, or read books about the condition. Tag along for medical appointments and ask the doctor questions. If youre well informed, youll have a better idea of what to expect and how to be the most help.
Recommended Reading: What Are Early Warning Signs Of Parkinson’s Disease
The Parkinsons Care Partners Digital Toolbox
This blog post is a good page to bookmark. It provides links to over 30 worksheets for Parkinsons wellness and lifestyle self-assessments, and symptom checklists. Also provided are links to caregiver tools, like calendars/organizers, contacts/communication tools, digital legacy management, general caregiving tips, legal information, meal planning, medication/medical management, safety, self care for the care partner, transportation, and more.
Parkinsons Care Partners: Rewriting The Rule Book
This 9-page digital booklet walks you through writing your personal rule book for living well with Parkinsons as a Parkinsons care partner. Having a rule book allows you to, “reset your relationship with your person with Parkinsons define decision making and focus on the well-being of yourself and your person with Parkinsons helps you identify and clarify challenges, wishes and expectations, and help you avoid feelings of anger or guilt that arise out of lack of clarity.
Read Also: What Color Is The Ribbon For Parkinson’s
Caring For Someone With Parkinsons Disease
Caring for someone with Parkinsons disease will change as the condition progresses.Your loved one is likely to cope well on their own during the early stages, and may only require transportation to doctors appointments, social engagements, and shopping trips. But their dependence will inevitably grow, and at some point, they may need your help with daily personal tasks, medication management, making financial decisions, and advocating with healthcare providers on their behalf.
Parkinsons disease places a significant burden on family caregivers, and they tend to suffer from higher rates of anxiety, depression, and sleep-related problems. These issues are even more common when Parkinsons disease causes a loved one to experience dementia, hallucinations, and other cognitive issues.
Caring for someone with Parkinsons disease can also result in social isolation, especially once the disorder reaches advanced stages. In some cases, caregivers reported that their increasing responsibilities led to tension with a spouse or partner. They were also more likely to report financial strain, especially if they reduced work hours or left their jobs entirely because of caregiving obligations.
Building Stronger Caregiving Partnerships Through Better Communication
Diminished communication significantly impacts the social, emotional and physical burdens of caregiving. In this hour long presentation at the Parkinsons Foundation Caregiver Summit Angela Roberts, PhD, explains how changes in speech, cognition and hearing due to Parkinsons disease affects communication. She then offers specific strategies for optimizing communication.
Recommended Reading: Can Parkinson’s Run In The Family
Medicaid / Hcbs Waivers
Under Medicaid, some family members can be paid as caregivers.
Nursing Home CareHome and Community Based ServicesPCA / PCS Programs
PCA stands for Personal Care Assistance or Personal Care Attendant and PCS for Personal Care Services. These are regular Medicaid programs that will pay a caregiver to come to ones home and provide personal care such as assistance with the activities of daily living An especially attractive element of these programs is the fact that often times, the paid caregiver can be someone familiar to the individual with Parkinsons. Friends and certain family members can be hired as paid caregivers. The downside of PCA / PCS programs are that the hourly wage that caregivers receive is very low and this is an optional Medicaid benefit. This means not every state offers this option as part of their regular Medicaid programs. A list of states which do offer PCS can be found here. Be aware that this list is not exhaustive and if one does not see their state listed, they should also inquire with their state Medicaid office if such a program is available in their state.
Hospital And Medical Environments
Electrical medical treatment. In the case that a medical treatment is administered where an electrical current is passed through the body from an external source, first deactivate the IPG by setting all electrodes to off, turning stimulation off, and setting amplitude to zero. Regardless if the device is deactivated, take care to monitor the device for proper function during and after treatment.
High-output ultrasonics and lithotripsy.The use of high-output devices, such as an electrohydraulic lithotriptor, may cause damage to the electronic circuitry of an implanted IPG. If lithotripsy must be used, do not focus the energy near the IPG.
Ultrasonic scanning equipment.The use of ultrasonic scanning equipment may cause mechanical damage to an implanted neurostimulation system if used directly over the implanted system.
External defibrillators.The safety of discharge of an external defibrillator on patients with implanted neurostimulation systems has not been established.
Therapeutic radiation. Therapeutic radiation may damage the electronic circuitry of an implanted neurostimulation system, although no testing has been done and no definite information on radiation effects is available. Sources of therapeutic radiation include therapeutic X rays, cobalt machines, and linear accelerators. If radiation therapy is required, the area over the implanted IPG should be shielded with lead. Damage to the system may not be immediately detectable.
Read Also: Essential Oils For Parkinson’s Disease
Can Support Groups Help Caregivers Of Patients With Parkinsons Disease
Although caring for a loved one is naturally deeply satisfying, it can also be stressful for caregivers who are responsible for providing constant care to patients with Parkinsons disease. Not only physically, caring for a patient with Parkinsons disease can prove to be emotionally challenging as well. Caregivers may find it particularly difficult to maintain a balanced personal life without facing periods of anger and guilt at times. In order to look into this matter, support groups so formed not only help the patients to deal with their mental pressure, but also their caregivers-
Stress Relief: With the help of the support groups the caregivers do not have to face their share of emotional pressure alone. Professional help from these groups help them relieve stress.
New Perspective: The support groups help the caregivers by offering a new perspective on the care-giving relationship with the patient.
Better Understanding: The support groups may provide a better understanding of the hows and whys of behavior pattern elicited by the patient with Parkinsons disease.
Communication: The support groups also provide a platform for open communication with other people facing the same struggles.
Tips for Better Coping: These groups provide an opportunity to share suggestions, tops and ideas among the group members.