When a loved one starts to show signs of a memory impairment or other brain disorder, seeking out help can be hard for family members.
Mickey, a Salinas woman who asked that her last name not be used to protect the privacy of her loved ones, didn’t know she needed help until she attended her first caregivers support group.
“I thought I had it all under control,” she said. “The first time I went to a meeting, I was in tears. It really helped me. A lot of women think they can do it all.”
Mickey started caring for her 78-year-old father, who has diabetes and had a foot amputated, and her 72-year-old stepmother, who has late-stage Alzheimer’s Disease, four years ago. Her family had agreed that the couple should move from King City to Salinas so that they would have more support. Mickey said when they first moved to Salinas, she and other family members put together a schedule to share the duties. But after a few months everyone else started to get busy and most of the burden fell to Mickey.
Mickey cooks dinner for her father and stepmother, makes sure they take their medications, puts her stepmother to bed, and shuttles them to doctor appointments. She goes from her day job to their home every weekday, and spends the weekends with them. It was at an appointment at a social services office that Mickey first saw a pamphlet for the Del Mar Caregivers Resource Center.
The Center is funded through the California Department of Mental Health, private foundations, government grants and private contributions. They offer services that range from respite care so that a full-time caregiver can get a break away from caregiving; care planning that connects caregivers with resources in the community and helps them to develop plans to share duties with other family members or friends; legal and financial consultation to help with planning for the cost of long-term care or setting up living wills and power of attorney; counseling and support groups; and workshops and training for caregivers.
The services are provided on a low-cost or no-cost sliding scale.
When Mickey first called Del Mar, she connected with Travis Beye, a family consultant. He invited her to a support group and is currently working to sign her up for respite care, which offers caregivers a break from the duties by providing a small stipend for someone else to come in and care for the loved one. She said he was looking at providing respite care one day a month.
Mickey’s family was unfamiliar with Alzheimer’s disease so she said her stepmother’s diagnosis was delayed until it was moderate. She said since the diagnosis, she has done a lot of research on the disorder to understand what is coming, but she said she still struggles with finding resources directly devoted to Alzheimer’s.
The support group has been helpful for Mickey. She said that each month there are different speakers who talk about different issues caregivers can face.
“I’m very glad I made it,” Mickey said. “It helped a lot getting things out. I was angry and had a lot of resentment (at my family) for not helping. I felt it was not fair.”
Caregivers: Call early for help
Like Mickey, Christina Andrade, a family consultant with the Del Mar Caregiver Resource Center, said that families often wait until the care giving duties have become a challenge before they call for help.
“Most call when they are in what we call a crisis,” Andrade said. “We calm them down.”
She suggested that families look into the resources in their community long before they think they need them. In Salinas, there are a variety of support groups as well as other agencies in addition to Del Mar that offer assistance to families dealing with a variety of disorders. She said that it is a good idea for families to get on a waiting list for services so that when they do need them, they will have access to them more quickly.
“Hopefully the two time frames will be about the same,” she said, of when they make it to the top of the list and need the services. “It doesn’t hurt to use services a little bit” so that they are already familiar with them when they become more of a need.
One of the first thing Andrade and the other consultants who work with families in Monterey, Santa Cruz and San Benito counties offer is a guide sheet on how to get help from other agencies.
“We have a guide sheet that we give to families on using community services,” Andrade said.
The guide sheet acknowledges that it can be stressful and it can take some time for families to connect with the right services. It has simple tips, such as choosing a time to place calls – noting that Friday afternoons are the worst time to reach someone. Del Mar staff members work with caregivers who are caring for a family member who is impaired due to Alzheimer’s Disease, stroke, dementia, Huntington’s Disease, Parkinson’s Disease, multiple sclerosis, brain tumors or brain injury, mild cognitive impairments, or other conditions that may cause memory loss or confusion.
Andrade noted that some services, such as funding for Alzheimer’s Day Care programs, were cut in 2009. Caseloads at Del Mar have increased since they too have faced funding cuts. Consultants have less time to do the outreach they used to do, such as visiting doctor’s offices and clinics to promote their services and ask for referrals. They try to get pamphlets stocked in senior centers, social services agencies and other places where families in need are likely to be.
Aside from encouraging families who have not had an official diagnosis to talk with a doctor about the condition to get a proper diagnosis, Del Mar is focused on supporting the caregivers.
“It’s all geared toward the caregiver,” Andrade said. “To giving them what they need to take care of their loved one and themselves.”
Andrade noted that many caregivers experience depression or other medical ailments that are associated with stress. One study showed that 60 percent have some kind of depression.
“They can be grieving the loss of the person and the loss of their own person as it is faded away,” with helping the family member.
She said some people go through a pre-grieving experience as they watch a loved one decline.
“Studies have shown if a person gets four hours total break away they were found to have less depression and less onset of medical issues,” Andrade said, of a need for weekly time off. “We encourage them to ask for help, if they haven’t asked for help from other family, friends or their church.”
She said often caregivers are more willing to ask for help from an agency than from family or friends. A family consultant can help facilitate a meeting with family members to help the primary caregiver enlist more help from others.
“We are directed toward the needs of the caregiver,” Andrade said of the meetings that focus on current needs and potential needs. “A task for people can be to simply come over and mow the lawn twice a month.”
Andrade said that in Monterey County and the Salinas area, there is more funding for respite care than in other communities covered by Del Mar.
“They have a whole other pot for respite giving through the Monterey County Area Agency on Aging,” she said.
Support groups and education are key
Andrade said though there is some funding for respite care, Del Mar’s big focus is on educating caregivers through support groups as well as workshops and training.
The support meetings can be especially helpful because Andrade said that outside family members or friends don’t always see the full extent of a person’s decline. Oftentimes, Alzheimer’s patients or those with other disorders will be on their best behavior while others visit.
“They can be very with it for the visit,” Andrade said, adding that some who are not closely involved with day-to-day care may believe the caregiver is making a bigger deal out of things. “While they visit, ask them to stay and be there for a while.”
She said that around the holidays when families often have visitors from out of town, they often get calls from adult children who are concerned about a parent after spending an extended time visiting.
“They cover up very well,” Andrade said of when someone first displays signs of Alzheimer’s disease. “They can have it for three to four years before it is diagnosed.”
Del Mar offers support to both primary caregivers, who take care of a person’s day-to-day needs, as well as caregivers who have outside help such as a nursing home but who still need to advocate for their loved one’s needs.
“We teach them how to talk to staff,” Andrade said. “They learn communication skills…getting the staff to listen to them and also educating families of rules and regulations.”
The age of caregivers as well as their relationship to the person they are caring for can vary. Andrade has seen an uptick in grandchildren caring for a grandparent in recent years. Many men and women care for a spouse and children care for parents.
Del Mar has also given workshops on placement for families who can no longer care for a loved one at home.
“They haven’t failed as a caregiver,” she said. “This is just the next step.”
She said that once a family member is in a nursing home or other care facility, the family members can become advocates for them.
“I look forward to the meetings,” Mickey said of her support group. “Every time is different, but everything they talk about touches me.”