This post describes the services offered by some local Santa Barbara care centers and suggests ways that people from other areas can find similar resources in their town or state. Finding the right support, using respite services carefully, and getting counseling are services offered by many community resource centers throughout this state. If you do not live in California, there are centers all over the country. You can contact your state’s Department of Aging or your area Agency on Aging through the federal government’s Eldercare Locator or call 1-800-677-1116. It also provides some guidance on how to know when you need more help as a caregiver and what to look for if you decide you need more help.
As it turns out, caregiving is one of the most difficult aspects of dying at home or having a long-term debilitating condition. On March 10th, this year the Gray Panthers of Santa Barbara presented a workshop on just this problem. Members of three local community groups were there, the Living Resource Center in Santa Barbara, the Friendship Center, and the Coast Caregiver Resource Center. They pointed out that the State Government in California has mandated 11 caregiver centers be established in California. In California, there is also a Department of Aging that can be accessed.
In Santa Barbara, The Independent Living Resource Center (https://ilrc-trico.org) case management, and caregiver respite (short-term, about 1 and a half days, a year). This organization promotes the Independent Living (IL) philosophy and its tenets of full access and equal opportunity, and mental health counseling. All their services are provided remotely, and they have offices in Santa Barbara, Ventura, and San Luis Obispo. They would be most helpful to people who are caretakers and need respite or counseling.
For those who work or have daytime responsibilities besides caretaking, Friendship Center (https://friendshipcentersb.org) is an adult day care facility for those who suffer from memory loss. They offer an opportunity for memory patients to make friends, and participate in group activities and games during the day. They focus on socialization and cognitive stimulation with love, games, activities, and hot meals (they have a partnership with the wonderful Rosewood resort that provides lunches). They will work with veterans to use their benefits to pay for services and they also have a special program, called Connections, that offers activities and workshops for high-functioning patients.
Coast Caregiver Resource Center (https://www.caregivercalifornia.org/) is in the Cottage Hospital Rehabilitation Center on Patterson. They work with unpaid caregivers providing case management, education, and counseling services. Their primary concern is the health and well-being of caregivers. Their services are free or offered on a sliding scale. They provide guidance in managing caregiver responsibilities, education regarding diagnosis and prognosis, and care. They can give a caregiver respite, refer to daycare centers or rehabilitation facilities, and other facilities. They always involve the patient in making decisions about their own care.
Visiting Nurses (https://vna.health/) points out that a 2020 study by AARP (American Association of Retired Persons) found that 1 in 4 caregivers reported their health was affected by their responsibilities. VNA focuses on providing help and education as well as hospice services. They are especially aware of caregiver burnout and outline the following symptoms that mean more help is required. These symptoms include:
- Being stressed out all the time.
- Feeling exhausted but unable to get a good night’s sleep.
- Feeling angry much of the time.
- Feeling weepy.
- Noticing that you have stopped seeing friends.
- Letting your own health slide.
If you notice several of these symptoms, you need help. One form of help is a support group. According to the Wall Street Journal, more and more often support groups are offered at work but Coast Caregiver Resource Center also can refer caretakers to such groups (and they are offered online for various diseases). You may also need to hire help. So, they also offer a list of qualities you will need to look for in hiring, which includes:
- A good sense of humor: there is no substitute for this quality.
- Compassion and empathy: Empathy is the ability to grasp what another person is feeling, while compassion can be defined as the desire to decrease the suffering of another.
- Patience combined with the ability to set and keep boundaries.
- Ability to cooperate with the patient and the family.
I would add that dependability is a major issue. Many families complain that caregivers do not show up consistently and when you are dealing with an individual, this is particularly hard. An agency will often send a substitute, though not always, which poses a wholly distinct set of problems. If you have had to find caretakers for children because you work, you already know that it is important to have “back-up” to your back-up. You have to have some depth on your bench to make it through any caretaking task.
If the patient is in the care of a home Hospice service, you will also receive medical services, like providing a drip for medication, administering medication, education, and support around the issue of home health care, and physical help in changing, toileting, and other tasks that might require more than one person. It is important to remember, though, that, unless the patient is in a residential hospice, most hospices only offer a couple of hours of help a week.
Yet, helping someone to die at home is one of the most difficult kinds of caregiving and, as all the information we have suggests, it is imperative that caregivers take good care of themselves. This means getting respite care or an extra hour or two of help each day, belonging to a support group, and taking advantage of mental health counseling from one of the agencies listed above.
In our community, there are plenty of great organizations from hospitals and nursing homes to hospices, rehabilitation services, psychological services, and even housing. Taking loving care of yourself as a caregiver can be difficult but these agencies and institutions lessen the weight on your shoulders and put the spring back in your step.