• Educate yourself about the medications your loved one is using, and if helpful, report problems and changes to their physicians. Inquire about the health of the“ well” parent. Is your mom’ s mammogram overdue? Does your dad neglect his own medical checkup because he’ s preoccupied with taking care of his wife? Ask your parents to schedule an appointment with the neurologist for a time when you can accompany them. The doctor will benefit from hearing your observations, and you will learn much about your parents’ communication style and be able to reinforce the medical instructions afterwards.
• Once or twice a year, offer and follow through with a 3- to 5-day respite stay for the primary caregiver. Arrive a day or two prior to the caregiver’ s leave of absence so that you can learn necessary skills to help your care recipient. If filling in personally is not possible, offer to pay for a respite stay in an extended care facility. Your family may be saving for a rainy day when it’ s pouring outside!
• If your parents are able to travel, invite them to visit you. For some older couples who are living with chronic neurological disease, it is easier to travel and be a guest in your home than to host family visits at their home. An added benefit when parents are visiting you is that relatives back home get a welcome break from their usual caregiving responsibilities.
• When the time comes, speak up as the out-of-towner with less caregiving burden, to affirm the difficult decision to place your loved one in a residential care facility. It is a mistake to allow worries about cash flow, sibling rivalry, or dwindling inheritances get in the way of doing what is best for the key players whose lives are most affected.
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Respite Care
Diane Breslow, MSW, LCSW
What is respite?
Caregiving is a tough job with long hours. To maintain your health and sanity and provide the best care for your loved one, respite is essential. Respite refers to short-term, temporary care provided to people with disabilities so that their families can take a break from the daily routine of caregiving. Respite services may sometimes involve overnight care for an extended period of time. Respite is an insurance policy against overtaxing yourself so that you can continue to provide quality care for the person with PSP, CBD, or MSA. Respite care enables families to take vacations or even just a few hours of time off. Respite is often referred to as“ a gift of time.”
What kinds of services are provided, and where?
Services are provided in many ways depending on the provider, the needs of the family, and available funds. The two primary categories of respite include in-home and out-of-home services. The following are typical services provided in each category.