"Living with a Chronic disease is most difficult when you don't have much information. You don't know what to expect from the disease or what your choices are in dealing with it." Tracy Pollan, Caregiver & Loved One, and Supporter
Education for Caregivers
It is important to know as a loved one or caregiver what to expect and how Parkinson's disease progresses. Obtaining as much information as you can will be a strong skill in helping prepare you as a caregiver for when a new symptom arises, or when your loved one begins to have difficulties in a particular area. Having the knowledge will allow you as a caregiver to stay calm and think clearly of how to handle the new situation and how to work through it. This website, starting at the Home page will provide information you need for education about the disease. Education regarding communication skills can be found on the symptoms and deficits page and you can request free educational materials to help understand the disease from the Parkinson's Disease Foundation. Parkinson's Disease Foundation also has a list of 750 resources to those looking for more information about PD and answers to questions that you might come up with. Please remember you are not alone and there are other families and caregivers on the same journey as you are, so support groups can be vital to maintaining a healthy mental state.
Advice for Loved Ones and Caregivers from other PD Caregivers
Providing the best care you can to your loved one
- Stay Organized
- Familiarize yourself with the provisions of your loved one's medical insurance coverage.
- Know your rights, as well as those of your loved one.
- Focus on quality of life
- Be sure to keep a positive attitude and sense of humor.
- Plan some activities for both of you to participate in together
- Caring for yourself is as important, if not more so, as caring for your loved one.
- Eat healthfully, get plenty of rest, and make it a point to exercise.
- Preserve as much as your life as it was before the diagnosis as this will enhance the overall quality of life for you and your loved one.
- Ask for help when you need it
Helpful Ideas and Reminders for Caregivers
- Remember to attempt to take time for yourself. Try and make time to relax, even if this requires you to ask for help from other family members or friends, or even hire an individual to assist in providing care to provide a break for you. It could be beneficial to look into possible respite care from a local agency.
- Educate yourself regarding Parkinson's disease. This will help you later on in the progression of the disease and what to expect regarding behaviors and symptoms. Learning about the disease will help you to recognize any changes that do occur.
- Let your loved one have some independence and try to avoid doing everything for them. Allow some daily activities that are still easy and possible for the loved one to complete such as dressing themselves.
- Discuss what the individual wants and whats best for the family. It might not be easy to discuss these topics as often they can be sad, but it will help in the long run to know what your loved one's wishes are regarding a living will. Topics to discuss can include power of attorney, do-not-resucitate (DNR) order, and end of life care.
- Put into place realistic goals for yourself but also for your loved one. Attainable goals will provide both success for you and your loved one rather than disappointment and becoming discouraged.
- Continue on with your life and do not put your life on hold. Try and meet up with friends, continue your hobbies and maintain a schedule as normal as possible that you can. This will help increase your energy level and will also help decrease the likelihood of you becoming resentful of your loved one.
- Have an individual that you can talk to about your feelings and emotions. You will be listening to your loved one and how they are feeling, so it is important for you to have someone that you can confide in and talk to honestly to help with your mental health. Joining a support group can be very helpful in connecting you with other people that know how you feel and are going through similar experiences including emotions.
List of Support Groups and Resources
Parkinson's Disease Caregiver Support Groups and Resources
- National Parkinson Foundation provides information and educational resources for patients, caregivers and professionals.
- National Parkinson Foundation- PD Caregiving 101 provides a list of specific topics that caregivers might come across and seek information. This resource will navigate the possible challenges of caring for an individual with Parkinson's disease, and also provide information about what to expect at different stages and how to recognize signs of caregiver stress.
- Well Spouse Association provides an opportunity for spouse, friends and loved ones to connect with other individuals for support. This organization is not specific to just Parkinson's disease and is open to anyone in a caregiver role of an individual with a disease.
- American Parkinson Disease Association provides local resources with a state locator drop down box to search for local resources including phone numbers, email addresses and additional websites.
- Michael J. Fox Foundation for Parkinson's Research provides great information and resources including advice for loved ones and caregivers. There are links for how Parkinson's disease could impact your marriage, friendships and your own emotional state.
- National Family Caregivers Association is the nation's leading family caregiver organization to help families and caregivers of loved ones with chronic conditions, disabilities and diseases to improve their quality of life.
- Parkinson's Disease Foundation is an abundance of information regarding Parkinson's disease including what Parkinson's disease is, funding research & results, understanding Parkinson's, living with Parkinson's, how to get involved and supporting information.
- Parkinson's Disease Foundation Caring In Parkinson's discusses that it is not just the individual diagnosed with Parkinson's but the entire family lives with Parkinson's.
Caregivers Handbook
Caregivers Handbook is a 35-page booklet to provide the caregiver guidance in organizing and simplifying the situation. Topics can include caregiving, legal and financial concerns such as advance care planning, health issues, and palliative care.