The quiet stillness of morning had always been a soothing part of the routine Pat shared with her husband Tom. It was a private time for her to have her coffee, read the newspaper, and check emails. Tom rose a little later, made his own breakfast, and began to work at his desk. But now, with the progression of Tom’s Alzheimer’s disease, Pat counts her personal time among the many things which have slipped away.
On this morning, however, Pat is taking a step to regain some of that nourishing quiet. Today is Tom’s first day at an Alzheimer’s day center—just one of the different types of day programs available to offer respite to caregivers.
Pat’s morning ritual had changed in response to her husband’s gradual decline in function, and Pat had to devote increasing amounts of her attention to Tom’s needs. Though she did her best, Pat says, “I know I was not able to occupy him all the time.”
For Pat, most days used to be filled with getting out and about, running errands, going to the gym. But that’s changed. “I don’t go out nearly as much as I used to. I can’t go out because I don’t know when he might decide to use the stove or go hunting for me and get lost,” Pat explains. Many caregivers find that their own isolation increases as their loved one withdraws from social situations that become difficult to cope with because of memory loss.
Last week Pat, Tom and their daughter visited an Alzheimer’s day center. “They are such wonderful people,” Pat says of the staff, “they have such a calling to these people . . . they know all the clients that come and know their families.” While Pat and her daughter were given a tour, Tom was shown the program. Pat reports that, “I kept watching him, but he never turned around and looked for us.”
Adult day centers for people with dementia and memory loss can provide a necessary—and very welcome—respite to the day-in and day-out tasks of caregiving. Caregivers can become overwhelmed by the additional responsibilities of managing the household and finances. Behavior issues such as repeating questions, “shadowing” the caregiver, and agitation can cause frustration and anger for any caregiver. Alzheimer’s day centers provide a break for the caregivers and afford them time alone in their own homes.
Day programs provide a safe setting and needed stimulation for the person with dementia, encouraging them to be more engaged and alert. Day program schedules usually run four to six hours, during which time the participant can be involved in activities, enjoy entertainment, have a hot lunch, and receive personal care. Most centers provide services from two to five days a week. Caregivers are free to run errands, attend to their own health needs, work, socialize, or simply relax.
Communicating with Tom about the day center was not easy. When Pat spoke with him about attending “The Club,” as she was advised to call it, she had to drop the subject when he became agitated. With repeated encouragement, Tom agreed to give it a try. “I think deep inside he knows some of it is for me,” Pat suggests.
Pat says she is confident this is the right step, “I thought about if he would feel I was abandoning him, but at the dementia caregiver support group they said, ‘Don’t wait until it is absolutely necessary; it is better to go when the patient has more cognitive abilities, then they make the transition better.’ ”
While Tom was at the day center, Pat was able to buy some birthday presents without having to rush home to check on him. She also returned to researching her family genealogy, one of her favorite activities. With all of the tasks and demands of caregiving, hobbies and interests have a way of falling to the very bottom of a caregiver’s list of things which need to be done. Pat plans for Tom to attend the center two days a week. “One day I will do something for myself, and the other I will do chores,” she says.
Unfortunately, Tom’s first day did not go smoothly. After lunch was finished he was quite adamant about wanting to go home. “I guess it’s a process; I did not realize that,” Pat explains. The staff has suggested that Tom be picked up after lunch, until he adjusts to the program.
Many people with dementia fixate on the caregiver for security. It can be difficult for them, at first, to be separated from their family member. Although a loved one may have difficulty adjusting, many caregivers come to see that the day center is as much a benefit for themselves as for their loved ones. Pat points out, “It’s good for both parties; you’re not just leaving your spouse, the staff has lots of activities for them.”
Should the day center not work out, Pat already has the information needed to find help in the home through a home care agency. She has taken advantage of the free family consultation available through Family Caregiver Alliance to discuss care planning and resources for caregivers in her area. Families throughout California can contact their local Caregiver Resource Center to locate a day center near them. Adult day centers are sponsored by a wide variety of programs and organizations.
Next Tuesday Tom will try the day center again. “It’s a lot, at first, for him to be with strangers and not know where I am,” Pat declares. “But we’re not going to give up.”