Susan learned this first hand when she and her husband, Tom, brought his Mom home to live with them. Mom suffered from dementia and had to be watched constantly. Susan found that when you become a caregiver, you start by giving up a few things you usually do for yourself to make up for the time needed for caregiving. Even though your service is one of love and you are willing to do the sacrifice on behalf of your loved one, you find yourself giving up a lot more as time goes on.
“As a caregiver,” Susan laments, “You are often frustrated that you can’t do enough for your loved one and so guilt and feelings of inadequacy set in. Couple that with feelings of being unduly burdened, of resentment, of stress and then of more guilt at having those feelings."
She continues, "Now don’t get me wrong, I am very glad that I spent those years in caregiving. There were many cherished moments with Mom that only I experienced.”
In order to enjoy those moments and sustain your caregiving momentum, a little respite is essential.
An article posted on About.com by Carrie Hill, PhD states:
“Caregivers who use respite care often tell me that although caregiving is one of the hardest jobs they've ever had, they wouldn't trade the experience for anything. Helping a family member or close friend who has Alzheimer's disease can provide a sense of purpose and great satisfaction. Still, the emotional and physical demands of caregiving make it hard to be a caregiver 24 hours a day, 7 days a week. Without respite care -- a temporary break from the demands of caregiving -- you may be more susceptible to the effects of caregiver stress, such as depression, exhaustion and other health problems.
Carrie Hill, PhD, About.com “Why Caregivers Need Respite CareGiving Yourself a Break Helps You and Your Loved One” Updated: August 3, 2008
Be on the lookout for caregiver burnout. It can creep up on you without your noticing it. Caregiver burnout symptoms can include:
- depression
- anxiety, irritability, or anger
- feelings of exhaustion
- self-criticism
- Withdrawal from usual activities
- trouble with handling caregiving responsibilities
- substance abuse
The need for support for caregivers at home has received national recognition. State Human Resource Departments and Area Agency on Aging Services are offering more counseling and respite services for caregivers. The ARCH National Respite Services is also an organization that is reaching out to educate and support caregivers in many states. There is, however, one service that is highly valuable but very underused:
Adult Day Care to the Rescue!
Adult Day Care respite is two-fold. It gives the caregivers much needed time to themselves and gives their loved ones social and interactive therapy with their peers.
Many adult day services offer such things as:
- Social activities; music, movies, crafts, excursions
- Meals
- Fellowship support
- Assistance with daily living
- Nursing care
- Help with activities of daily living
- Medications
- Physical therapy
- Transportation
Finding an Adult Day Services provider takes a little investigating on your part. It is important to know what you are getting and that your loved one is comfortable with his or her new surroundings.
First: Ask for recommendations.
Check with your local Senior Center, Area Agency on Aging Services, Mental Health Centers, Doctor, Clinic, Family, Friends and neighbors. The best recommendation is by someone who has used the adult day services or is familiar with those who run it.
Second: Call and ask the facility to send you information.
Ask specifically to be sent the application, eligibility requirements and payment information.
Ask to see the calendar of activities, menus, hours and days of operation are needed to be sure to fit your schedule.
Ask about availability of transportation to and from the location and what is the cost.
Ask who runs the facility. Is it private, non-profit or a franchise or part of an assisted living facility or a nursing home?
Third: Visit the Adult Day Care facility.
Go visit the provider location along with the person you are caring for.
See if the staff is friendly.
Check that it is clean and odor free.
Ask about the experience of the staff.
Request a list of references.
Fourth: Find out the cost and payment requirements.
A survey from NCOA/NADSA provides the following information on fees:
“Fees for Adult Day Care providers range from $25 per day to $70 per day, with the average around $50 per day. Many facilities provide services with a sliding fee scale.”
One last word of advice. Don’t feel guilty about taking your loved one to adult day care.
Susan’s mother-in-law complained bitterly about leaving home and going to the adult day care facility, expounding on how Susan just didn’t want her around anymore. This only increased the guilt Susan was already feeling, but Susan was also determined that she needed the respite time the day care would provide and they pressed forward. That evening as Susan picked up Mom and helped her into the car, Mom -- who suffered from dementia -- exclaimed, “That was the nicest resort I have ever been to!”
Click here to learn more about the AOA National Caregiver Support Program.
The National Care Planning Council supports Caregivers and Adult Day Care Providers.
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RESEARCH ON CAREGIVING STRESS AND HEALTH: Men and women, age 35-80, who are caregivers for spouses or parents with memory disorders or dementias (such as Alzheimer's disease) can earn $40 for research participation that includes a blood draw and 3-4 hours of interviews and questionnaires about your recent and lifetime history of stress and health. We are also seeking "control" or noncaregiving premenopausal women, who are NOT providing any care to an impaired family member. For a detailed study description, visit www.stressandhealth.org.
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