Caregivers/ Respite Care
The Need for Respite Care
Our Parkinson’s Support Group is not only concerned about the well being of our members with PD, but also with their caregivers. This is especially true when the disease reaches the stage where the person with Parkinson’s needs more and more help.
The facts below were reported by Family Caregivers Alliance (FAC) report on Parkinson’s caregivers. They leave no doubt of how important having respite care is.
• The typical PD caregiver is a 64-year-old woman who has been caring for her husband for three years or more.
• On average, PD caregivers provide 96 hours of care per week, or 14 hours per day, to their care recipients.
• PD caregivers experience high levels of depression compared to other caregivers.
• PD caregivers report increased depression, arthritis, asthma, diabetes, heart trouble, and
high blood pressure compared to other caregivers
• At assessment, PD caregivers expressed the need for respite (85%), emotional support (83%), and behavior management (32%).
Where Can Caregivers Get Help?
1. From the Arizona Chapter of the APDA. Our local chapter of the APDA will subsidize the cost of 4 hours per week of in-home care through a licensed agency. The cost of in-home care is approximately $22 per hour. A brief financial questionnaire is used to determine what your share of cost will be.
Participants will pay between $6 and $10 per hour and AZ-APDA will pay the balance. Care in an adult day healthcare program can also be arranged for up to 8 hours per week at roughly half these rates. For more information, call (520) 325-5400. To download a Caregiver Holiday application, click here: <download an application>.
To be eligible for a Caregiver Holiday, you must pay annual dues of $35 per year to the Arizona Chapter of APDA. Make your check payable to: Arizona Chapter American Parkinson Disease Association and mail to same at 5905 E. Pima Street Tucson, Arizona 85712. Or call (520) 325-5400 for more information.
2. From the Green Valley/Sahuarita Support Group. If you need more help than you get using the APDA respite care program, our Respite Care Fund will pay half of the cost of a professional caregiver. The base amount for each member requesting assistance is $300, with a larger sum allowed on a case-by-case basis.
To get help with respite care, first call Shirley Girod at (520) 399-0913 with your request. Arrange for the professional caregiver and pay for his/her time. Then send the bill to Shirley Girod, Treasurer, at 2000 S. San Vincent Dr., Green Valley, 8514. She will then reimburse you.
Other Options
FCA |
Family Caregiver Alliance
While not specific to those to care for a Parkinson’s patient, the site is full of information on the challenges caregivers face.
www.caregiver.org
HUMANA |
Humana Insurance Website
Use the link below to access their caregiver info. You can sign up for a free newsletter and CDs and DVDs that offer helpful information.
www.humana.com/caregiver
The Journey from Spouse to Accidental Caregiver
When your spouse was diagnosed with Parkinson’s Disease, you did not automatically become a caregiver. With a few adjustments, your spouse was most likely still able to do most of what he or she always did. So you were still more of a partner.
However, you no doubt realized that you’d just gotten a ticket for a journey that would inevitably lead to you needing to help and support your spouse in ever-greater ways.
Little by little, you will notice that happening. You’ll wake one morning to realize that your spouse can’t do something as well as he or she did the day before. The two of you will make another adjustment, and life will go on. After a while, where your spouse is now will become your new normal. Until he or she takes another slide downward.
This might go on for years, if the progression of the disease is slow. But one day you will wake up knowing your life has changed—helping your loved one with the basic tasks of life has become the most important job you have.
You are now a caregiver. But you are not a superwoman. You’ll find yourself challenged on every level—physical, emotional, mental, and spiritual. You will have to find ways to take care of yourself while taking care of a person who depends on you more and more.
The importance of this can’t be overstated. The chronic stress caregivers experience can lead to neglect of personal needs, illness, depression, excessive drug and alcohol use, and burnout. A study reported that 30% of caregivers die before the person they are caring for. (Click here to go to Ten Tips for Family Caregivers)
Our Parkinson’s Support Group is as committed to supporting the well-being of caregivers as it is to supporting people with PD. The monthly Caregivers Group meets at the same time and place as the Men with PD and Women with PD. This allows caregivers to come without worrying about their loved ones—they are hopefully attending their own meetings. In addition, the Caregiver’s Corner, an article addressing caregiver issues, appears in every Parkinson’s Post.
More Resources
Respite care is available through the Arizona Chapter of the APDA and also our organization. (See article to the right.)
The Caregiver Education and Support Program of Pima Health System (PHS) offers a six-week class on caregiving here in Green Valley, with a follow-up monthly support group meeting. For more information and current schedule, call Mara at (520) 243-8378.
The Caregiver Consortium offers a wonderful day-long workshop each November. It also offers free respite care to a limited number of caregivers, so they can attend the conference without worrying. Their website is http://www.arizonacaregivers.org
Here are some other websites you might find interesting:
Family Caregiving… It’s not all up to you http://www.familycaregiving101.org/
Today’s Caregiver http://www.caregiver.com/
Caregiver Information on Medicare.gov gives help on understanding medical bills
http://www.medicare.gov/caregivers/
CARE (Caregivers Are Really Essential) for Caregivers of People with Parkinson’s has an extensive list of links on topics of importance to caregivers. http://www.pdcaregiver.org/