“You need some alone time to recharge your batteries. Don’t feel that you must carry this alone. Involve your family. Help each other. Being the caregiver is hard work. Don’t be ashamed if you get tired. It is important that you talk to each other. Just because your mate has Parkinson’s doesn’t mean that they can’t support you emotionally. It is the body that doesn’t work, not the brain and heart!”
—MELODY H., PARKINSON’S CAREGIVER
Respite is defined as “a short period of rest or relief from something difficult or unpleasant.” If you plan on being a caregiver for any length of time, you will need this.
Respite care allows you to take a break from caregiving while someone else takes care of your loved one for a few hours, days, or weeks.
You may hear some people saying that you’re “running away,” but you’re not. You’re just stepping off the playing field for a little bit and giving yourself a break. This can also be a good break for your loved one with PD.
As the needs of the care receiver will vary, so will the amount of time off a caregiver will need. Depending on how much care your loved one needs daily, you may find that taking a few 15- to 20-minute breaks throughout the day is enough. Some caregivers need more than this, however, and choose to take one or multiple days off a week to avoid burnout.
Remember, as a caregiver it’s essential that you not feel guilty about wanting to have time off and have a respite worker come in. It’s not selfish for you to want this time off. Instead, it is absolutely necessary that you take it, for both your sake and the sake of the person for whom you are caring.
Help can come from many people, including friends, family, neighbors, or respite workers from local organizations. A respite worker is someone who comes into your home and helps a person with PD with activities of daily living, cooking, house cleaning, and so forth. When looking for formal respite care in your community, you should find several types available. These include companions, homemakers, home care aides, home health aides, adult day care, and overnight care for a few days or longer in a facility such as a nursing home.
Following are two types of formal respite care that have proven themselves valuable to caregivers.
Many people think that adult day care is just a nicer way of describing what is essentially a nursing home. This is not true. Adult day care programs work to help people keep their independence longer by offering activities and services geared toward their needs, knowledge, abilities, and level of participation.
Following are some of the activities offered at adult day care centers.
• Arts and crafts
• Exercise classes
• Musical entertainment and sing-alongs
• Mental stimulation games such as bingo and board games
• Discussion groups (books, films, current events)
• Holiday and birthday celebrations
• Local outings
• Occupational therapy
• Massage therapy
Adult day care programs are offered in a safe and secure environment, and most provide a light breakfast, lunch, and snacks. Some even have support and counseling services for caregivers and provide transportation to and from your home.
If your loved one needs extra care, supervision, or companionship during the day, or if you need respite during daytime hours, an adult day care center may be the solution for you.
The costs for these programs vary depending on where you live and what services they provide (e.g., meals, transportation, nursing supervision), but in the U.S. they average about $75 a day.25
Where there are professional health services, higher fees will apply. Some facilities offer their services on a sliding scale, meaning that what you pay is based on your income and ability to pay. Also, if your income is very low, Medicaid (U.S.) may pay for some or all of the costs.
You can find adult day care programs through your doctor or local aging society or by searching online for adult day care, aging services, or senior citizen’s services.
Another popular formal respite choice is home care. You may have heard the terms “home care” and “home health care.” The difference between the two is that home care involves care that is nonmedical and does not require a prescription, whereas home health care requires medical care and is prescribed by a doctor.
Both types of services are usually less expensive, more convenient, and just as effective as the care you would get in a skilled nursing facility.
There are many reasons you may want to use home care services as part of respite. One reason is for you to get relief from the more physically and emotionally draining caregiving tasks, such as bathing, toileting, and dressing. This will help prevent burnout. Another is having the convenience of being able to leave your home while the home care worker is there with your loved one, and having the choice to pay for only the hours or services you need (anywhere from a couple of hours to a whole day).
Your loved one may also appreciate home care if they have lost their ability to drive. A home care worker can provide transportation and accompany your loved to run errands or go to social events.
Finally, hiring a home care worker can give you peace of mind. Knowing that your loved one is getting the care they need when you’re not there can really ease your worries. This type of care comes in handy if you live apart from your loved one and are caregiving from a distance.
Rates for home care vary depending on where you live and the amount of care you will need. You can find rates for the U.S. in chapter 8.
Following are some of the services provided by each type of home care.
• Personal care
• Dementia and Alzheimer’s care
• Medication reminders
• Light housekeeping
• Meal preparation
• Transportation
• Grocery shopping
• Work in tandem with hospice and palliative care
• Nursing
• Medication management
• Speech and language therapy
• Physical therapy
• Occupational therapy
• Wound care
If you live in the U.S. or Canada, an excellent online resource for finding home care is Senior Helpers. This organization has partnered with the Michael J. Fox Foundation to create home health care services specifically for people with Parkinson’s. It also provides in-home services for those with Alzheimer’s and dementia.
You can learn more about Senior Helpers by visiting https://www.seniorhelpers.com/ (U.S.) or http://www.seniorhelpers.ca/ (Canada). You can also find resources online by searching for home health care in your state or province.
If or when you decide to look for extra care inside your home there are several potential options, depending on how much care you want (visiting or live-in) and what kind of budget you have. Whatever type of caregiver you choose, you’ll want to make sure you screen them by hiring a company to do a background check and to check their credentials.
One great feature of Senior Helpers is its Parkinson’s Care Program. This specialized training program provides its caregivers with expert training and education necessary to create personalized care plans for individuals living with Parkinson’s. You can learn more about it here: https://www.seniorhelpers.com/.