Caring for the Caregiver

Caring for our loved ones when they are in need—whether a spouse or a child or someone else in our inner circle—can bring rewards. It feels good to care for those who hold our hearts. We want our loved ones to live well and safely. Caring for a loved one can also strengthen our relationships.

As greater numbers of our population age, more and more people are taking on the caregiving role in their families. Our elders may require help in their daily activities—eating, bathing, dressing, toileting, and other needs. Other care recipients can include persons suffering from a disease, a mental disorder, or a disability.

According to a data-gathering service called Statista, 11.48 million people in the United States during 2022 were caring for someone with Alzheimer’s or dementia. Nearly half of that number were female. About 45% were unpaid caregivers, and 55% spent six or more hours daily caring for their loved one.

While most caregivers do not regret the care they provide, nearly all caregivers report higher levels of stress than people who do not provide care for another. That stress can lead to depression, anxiety, fatigue, loneliness, financial problems, and at times even health issues of their own.

“It’s okay to take care of yourself, too,” says Susan Woolner. Woolner is a neuro patient and caregiver support coordinator at Trinity Health Grand Rapids. “Caregiving is difficult, and it is harder for some than others. That doesn’t mean you aren’t a great caregiver. It may mean that the person you are caring for requires more care than you can give, and it is okay to be the organizer and leave the direct care to others.”

Support is available in person and online

Woolner oversees eight support groups in four categories for caregivers: epilepsy, multiple sclerosis, dementia and neurocognitive issues, such as Alzheimer’s and Parkinson’s, and stroke.

“We offer virtual as well as in-person support groups,” Woolner says. “One-on-one meetings with caregivers to provide support and resources are also available from the Alzheimer’s Association, clinic social workers, or other community organizations like the Area Agency on Aging. Part of what we do is to connect people with other resources.”

In person meetings take place at 245 Cherry St. SE, 1st Floor Conference Room, in Grand Rapids, Michigan, while virtual meetings take place over Zoom. Reminders are emailed to anyone who is interested three to four days prior to the meetings and include a link to the virtual meeting. These support groups are part of the specialized senior care provided at Trinity Health.

Support groups are a mixture of educational topics, peer support and information about resources. They offer a safe place to ask questions and get additional information on a variety of topics. The groups are co-facilitated by Woolner and Sharon Koet, both Alzheimer Association longtime volunteers and caregivers themselves. Each year, group members provide input to topics they want for the following year.

“The groups are modeled on the PACE model,” Woolner says. “PACE is a Medicare and Medicaid program that provides all-inclusive care for patients who are 55 years and older so that they can stay at home in their own community rather than have to live in a nursing home or other care facility. PACE programs offer guidance and provide comprehensive medical and social services—and that relieves a lot of the stress caregivers can experience. There is great strength just in knowing you are not alone.”

Warning signs for caregivers

Sharing the worries and responsibilities of caregiving with others in similar situations can alleviate stress and burnout. Signs for caregivers that may indicate a need for help include:

• Feeling a constant sense of worry
• Feeling tired all the time
• Sleeping too much or too little
• Experiencing an increase in health problems, headaches and other kinds of pain
• Misusing drugs or alcohol, including prescription drugs
• Being quick to anger
• Feeling sad or depressed
• Losing interest in your own hobbies or activities

“We recommend that caregivers learn to ask for help and accept help when it is offered,” Woolner says. “Technology such as Alexa or similar home devices can be a great help, too. For instance, someone with dementia may ask the same question over and over again—and Alexa won’t mind answering again and again. There are also in-home health care aides and various adult daycare programs that can give the caregiver a much-needed respite.”

A frequent topic in support groups, Woolner says, is talking about what to expect next. As stages of dementia progress, caregivers may find that their loved one becomes argumentative, even aggressive, for instance.

“We talk about what to expect and how to handle it,” she says. “Rather than to argue with the person—because reasoning and logic no longer work—try to distract them. Agree with whatever they are saying, even if it makes little or no sense. Women patients sometimes revert to their childhoods, and then they may also exhibit shadowing behavior, following the caregiver around.”

It is not uncommon that someone forgets the relationship they have with their caregiver, Woolner says. If the caregiver is the daughter, they may think she is their mother or sister or someone unknown, and that is hard and sad for the caregiver.

Learn about caregiver rights and where to find help

Knowing what comes next can be helpful, but Woolner also addresses the practical. It is called the Caregiver Bill of Rights.

“Caregivers need to stand up for their rights,” she says. “In most every family, we have found that caregivers need to plan ahead, get documents in place, and apply for conservatorship.”

A conservatorship allows the caregiver to become a legal guardian and be able to make decisions about the loved one’s medical, financial, and mental health care when they reach a point of no longer being able to do so themselves.

Not all support groups, however, address mental disorders, Woolner points out. The epilepsy support group, for instance, offers art therapy for adults ages 18 and above. The focus of this group is using art therapy to address or process emotional stress, frustration, or life changes that some people experience with the diagnosis of epilepsy. The group provides peer support, strategies about adapting and coping with epilepsy and supporting one another. All art materials and instructions are provided, and attendees do not need to be an artist to attend.

“We currently have about 3,000 people on our mailing list for caregiver support groups,” Woolner says. “Most of the groups have about 20 participants. We have an ASL translator for those who need that. The virtual meetings send a transcript afterward for anyone interested but not able to attend.”

Additional reading

• Trinity Health Neurosciences Programs and Clinics
• Understanding Memory Loss
• Is That Senior Moment a Cause for Concern?
• Diagnosing Parkinson’s Disease
• Treating Parkinson’s Disease

For more information, or to join the West Michigan support group mailing list, call Neuro Patient Support at 616.685.4444 for Grand Rapids, 231.672.8777 in Muskegon, or email neuropatientsupport@trinity-health.org.