In my last article, I discussed the signs, symptoms and consequences of Parkinson's disease. Much like many other degenerative neurologic processes, Parkinson's presents many challenges to the person affected and to the caregivers as well.
The focus after diagnosis, which can be challenging, is often aimed at treatment of the movement complaints, while the other symptoms can prove to be just as debilitating. These other symptoms — which can include pain, depression, anxiety, hallucinations, and memory and focusing problems — can lead to stress in both the person affected and the caregiver. Caregiver depression is often directly related to patient depression.
Caregivers often complain that they are overlooked and ill-equipped to provide care to their loved one. Many feel thrust into the role with little attention given to their needs. Many may feel that they are just "expected" to jump in and provide care with little preparation for what will be expected of them, as well as anticipatory guidance for what challenges they may face.
In an article entitled "Quality of Life in Caregivers of Parkinson's Disease," caregivers were noted to have increased depression scores, poor social lives and low quality-of-life scores. Another study published in the South African Journal of Occupational Therapy in particular cites isolation, lack of time, feelings of powerlessness, stress, financial concerns and feeling physically drained as the most common experiences of caregivers.
Parkinson's is progressive and the course for each patient is different. Not all who are affected will experience the exact same symptoms at the same time. Some may experience symptoms occurring at different levels of intensity, and the progression may vary from one person to another. With so much uncertainty, the emergence of new symptoms may take the person affected, as well as the caregiver, by surprise. Unless they are prepared.
Particularly challenging is the sleep disturbance that often accompanies Parkinson's disease. Special attention to quality of sleep and bedtime routines is important for quality of life. Vivid dreams may interrupt sleep and contribute to decreased quality of sleep. The sufferer's quality of sleep often affects the caregiver's quality of sleep. Hallucinations can be particularly difficult to control and distressing for both patient and caregiver.
What can the family affected by Parkinson's disease do to increase quality of life for all involved? As previously acknowledged, caregivers are often the most overlooked while being a crucial part of the care team. Managing caregiver stress requires the caregiver to reach out to those around them: family, friends, social circle, and community resources to provide support.
I find an effective means for the primary caregiver (whether a spouse, child, relative or friend) to connect with other family members is to communicate via a family meeting. The experiences of various family members are often very different. When all involved are connected in person in the same room and/or via a conference call, everyone can have the opportunity to share their thoughts, concerns and suggestions for solutions.
When family members are at a distance, it can be particularly difficult for those family members to feel connected and have a full understanding of what daily life looks like for the immediate caregiver. Unfortunately, long-distance family members may have unrealistic expectations of the local caregivers and an altered view of what's really happening. This results in additional stress for the caregiver(s) who is/are doing the daily work.
If a hospitalization takes place, the most all-inclusive approach may be to involve your local palliative care team. Palliative care is often mistaken for hospice care and consequently overlooked as an option for comprehensive long-term planning. Carroll Hospital Center offers palliative care to complement on-going treatment for the symptoms of Parkinson's or any chronic disease process. This excerpt from the Carroll Hospital Center Palliative care brochure best explains what palliative care offer:
What can the palliative care team do for patients and families?
•Provide emotional and spiritual support
•Collaborate with nurses and physicians to address the management of symptoms, such as pain, shortness of breath, nausea, fatigue and anxiety
•Educate to promote understanding of the underlying disease process
•Provide easy-to-understand explanations of difficult medical conditions
•Improve care when provided simultaneously with optimal medical management
•Coordinate care between multiple providers and consultants
•Assist in establishing goals of care and priorities
•Assist with advance directives
•Ease transition out of the hospital using a multidisciplinary approach
Caregiving is a demanding and challenging endeavor. Self-care is so important for caregivers. Take a break, get help, create a "helper list " now so that if you need help you can go to the list of all the people who have offered to pitch in and access it quickly.
Some other self-care ideas for caregivers include: Create a folder or book to organize medical records and include a question page for the doctor or health care professional, let go of feelings of guilt, attend a support group, talk about your feelings with a trusted friend, and take care of your own health needs. These are just a few of the suggestions for caregivers to decrease the stress of providing care. Remember caring for another requires caring for yourself as well.
Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at JillRosnerRN@aol.com.
Caregiver Distress scale and Caregiver stress inventory: http://www.parkinson.org
Caregiver Alliance Caregiver Self Care: Caring for You: http://www.caregiver.org