Give yourself a break: Respite care and Parkinson’s psychosis

Last updated Oct. 1, 2024, by Susie Strachan

 

When you are the primary caregiver for a spouse experiencing hallucinations and delusions from Parkinson’s disease, it’s natural to feel emotionally and physically drained at times — or all the time.

Parkinson’s psychosis may cause your loved one to see or hear things that aren’t real, develop delusions of paranoia or jealousy, or have changes in behavior. It can be distressing and exhausting.

Respite care is short-term temporary care that allows a caregiver to take a much-needed break from the demands of regular caregiving. This is especially important when dealing with symptoms of Parkinson’s psychosis, such as hallucinations.

Respite care may be for a few hours, a few days, or even longer. No matter its length, it should give you the chance to rest and recharge, so you can return to caregiving refreshed and better able to support your spouse and their health needs.

What is respite care?

The primary goal of respite care is to provide you with a much-needed break from caregiving while feeling assured that your spouse is still being well looked after.

However you set up the respite care — in your home, at a healthcare facility, or through a Parkinson’s community program — it’s important that the temporary caregiver knows how to care for your spouse’s specific needs, including how to handle Parkinson’s hallucinations.

Christopher Norman, a board-certified nurse practitioner with the National Council on Aging, says that acting as your spouse’s full-time caregiver means being directly involved in their daily care, an ongoing responsibility that can easily become emotionally challenging.

Why respite care is important

The time to consider respite care is when you start feeling overwhelmed or when your own health begins to be affected, says Norman, who specializes in providing assessment, management strategies, and treatment to people living with cognitive impairment, as well as the people who support them.

While caring for your spouse is an act of love and responsibility, he points out that failing to recharge your own physical and emotional batteries may affect your ability as a caregiver, and possibly lead to caregiver burnout.

Caregiver burnout is a state of physical, mental, and emotional exhaustion that can result from the constant demands of caring for a loved one. It often leads to stress, fatigue, and a decline in your own well-being.

Stepping away for a few hours or days is something you should do as a caregiver so you can continue to provide the support your spouse’s needs, and as a way of looking after yourself because your health matters, too.

But you don’t have to be at risk for burnout to arrange for respite care. There are many reasons you may need a break, including making sure you exist as your own person outside of your caregiver role.

“Respite care doesn’t just need to be when you’re too overwhelmed,” Norman says. “You can plan respite care if you have a vacation planned with friends or family.”

Finding a respite caregiver

When looking for a respite caregiver who will be a good fit for your spouse, you may need to try a variety of approaches, including:

• talking with other people you know who are caring for a loved one with Parkinson’s psychosis to learn if they have used respite care
• asking your spouse’s Parkinson’s healthcare team for recommendations for specialized respite care services or community resources
• looking online for respite care providers in your area who have experience in Parkinson’s psychosis
• doing a site visit at a Parkinson’s community program or a healthcare facility that offers respite care to see if it meets your spouse’s needs, including knowing how to handle Parkinson’s psychosis
• contacting your health insurance company to see what respite care options are covered and if there are preferred providers.

Choosing the right respite care

Once you have begun to narrow your choice of possible respite providers, including whether the care will be done in your home or through a health facility or community program, there are some potential issues you need to address.

For example, it’s important to ask about the person or program’s methods for dealing with hallucinations or delusions your spouse may experience.

The respite provider also should be able to help your spouse with their Parkinson’s physical symptoms, such as tremors, rigidity, and slowness of movement (bradykinesia).

To ensure a smooth transition, consider how your spouse might respond to a new caregiver and the potential costs involved.

To ensure your spouse receives the best possible care, look for a respite care provider who:

• has experience managing the types of behaviors associated with Parkinson’s psychosis
• provides regular updates on your spouse’s well-being and any changes in their condition
• has a plan in place for emergencies and understands how to handle unexpected situations.

You might want to consider a trial period where you show the caregiver how you manage daily routines, guide them through any specific care techniques, and help your spouse become comfortable with their new caregiver.

It also allows you to observe how your spouse adjusts to their respite caregiver, and, hopefully, gives you peace of mind before you leave.

Working with a respite provider

Preparing for respite care starts by making sure the new caregiver is well informed about your spouse’s needs and preferences.

To ensure a smooth transition, you can prepare by:

• writing a detailed healthcare plan that includes your spouse’s medical history, daily routines, medication schedules, and specific needs related to Parkinson’s psychosis
• noting any triggers that may lead to hallucinations or delusions, including suggestions for how to handle these situations
• detailing how to manage your spouse’s physical symptoms of Parkinson’s disease
• making a written and digital contact list that includes your contact information, any friends or family members who can help in an emergency, and local health services familiar with Parkinson’s disease
• having your spouse talk about their life, including their hobbies, likes, and dislikes, to help build a connection with the caregiver
• providing a brief family history, including information about relatives and friends who may be involved in your spouse’s care
• letting the respite caregiver or care agency know in advance if you have a pet, such as a dog or cat, and being prepared to isolate the pet or make other arrangements for the pet for the duration of the visit.

Involving your extended family

If family or close friends are offering respite care, talk to them about:

• taking your spouse to healthcare appointments
• covering for you when you have your own appointments
• offering to take care of your spouse while you take a vacation.

Approach caregiving by a family member or friend in the same way you would for a hired caregiver. Prepare them by going over all the same information, including daily routines, medications, and how to deal with hallucinations and delusions.

When your family members are not involved in the day-to-day care of your spouse, there are still other ways they can help support you, if they are interested, including the following:

• Make regular check-in calls to you and your spouse.
• Help financially with the cost of respite care and other financial considerations, such as medications, groceries, and transportation to medical appointments.
• Research financial assistance programs.
• Assist with finding and vetting respite care services.

Financial considerations with respite care

Respite care costs can vary based on the type of care you choose — whether it’s at-home, in a healthcare facility, or through a Parkinson’s community program — and for how long.

While it can be expensive, there may be ways to manage these costs and find a solution that fits within your budget.

Consider looking into:

• government assistance programs such as Medicaid or veterans’ benefits, which may provide financial support for respite care services
• health insurance policies that cover certain types of respite care or offer financial assistance
• respite care providers that offer sliding scale fees based on income or payment plans to help manage costs over time.

You also may have to factor in other financial considerations into your respite care plan, including for out-of-pocket expenses such as:

• transportation to Parkinson’s adult daycare programs or specialist appointments
• memory and visual aids, such as reminder signs, calendars, alarms, and augmentative and alternative communication devices
• emergency care.

Other caregiver supports and useful resources

Parkinson’s disease associations and organizations may be able to offer information on setting up respite care, financial assistance, and other support for caregivers.

National organizations include:

• Parkinson’s Foundation
• Michael J. Fox Foundation
• American Parkinson Disease Association.

International organizations include:

• Parkinson Canada
• Parkinson’s UK
• World Parkinson Coalition.

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