Caregiver Support

My husband recently had a stroke. After being at a rehab center, he’s coming home. He’ll work with an occupational therapist here. How can I best work with the OT?

Communication is key. So advises Carol Siebert, a member of the American Occupational Therapy Association and a home care OT. “The occupational therapist needs to know from the client and caregiver what has to happen in terms of daily routine and personal care. A three-way conversation could be helpful” for all to understand what the caregiver expects to do or is expected to do, the caregiver’s health conditions and needs regarding the caregiver’s work schedule.

It’s important for you to express your own goals, says Siebert. “It may require a conversation between you and the therapist alone, without your husband in the room. That helps for formulating goals and prioritizing. Home healthcare has to be goal-identified, from what your husband and you identify as priorities. I strongly urge caregivers to advocate for their own needs. The process is about improving the situation for everyone involved.”

I heard something about assisted-living facilities that has me concerned as I help my dad find one. Is it true that an ALF can ask you to leave because of a change in your health?

"An assisted living facility will, in general, provide room and board and help with bathing, dressing and other activities of daily living. Some help with self-administration of medicines," says Robert Mollica, senior program director at the National Academy for State Health Policy in Portland, ME. But, he cautions, policies governing facilities are determined by state and can differ depending on where the facility is located.

The first step in choosing an ALF is to understand the regulations provided by "the agency responsible for licensing facilities. This can be done through your state's public health department or office on aging," Mollica explains. Then you must contact the facility or facilities you're interested in and "see how each facility applies [the state's regulations]. Regulations may say, for instance, that if you develop a health condition that requires nursing care, you can stay. But," Mollica points out, "a facility may choose not to permit that. It's important to understand under what circumstances the facility could ask you to leave."

My two sisters and I take care of our mom 24/7. Each of us takes an eight-hour shift per day, and each week we rotate shifts. The problem is, each week the hours when I can sleep change, so I have trouble sleeping. How can I deal with this varying sleep schedule?

The first step would be for you and your sisters to "stay at a particular schedule for a period of time, at least one to two weeks, and then when you make the shift, shift forward, from say an eight-to-four shift to a four-to-midnight shift," says Thomas Freedom, MD, director of the Sleep Disorder Center at Evanston Northwestern Healthcare in Evanston, IL. "The shift has to do with the way our sleep rhythm works; it's easier to stay awake and go to bed later."

In addition, there are several stimuli to try when going through the process of "resetting your internal clock," says Dr. Freedom. "Stay away from bright lights and keep things dim near bedtime. Conversely, when you get up, make things very bright; open all the windows and turn on all the lights if it's daytime. It's important to get exposure to light."

It's all about following what Dr. Freedom calls "the basic, good practices of sleep. Keep the bedroom quiet and, if needed, wear a sleep mask or earplugs. Beyond that, if there's still a problem, his advice is to "avoid over-the-counter medicines and seek a sleep professional. The American Academy of Sleep Medicine will help you find a local sleep center." Just go to www.sleepcenters.org.

My partner has moved out to care for her mother full time. She feels that this is her responsibility alone. I have offered to help, but she refuses. I need help in coping with this. Do you have any suggestions?

"I know it's a hard situation but I would first recommend that you have a conversation with your partner when you're not full of emotion about the decisions made so far," begins Christine Moutier, MD, associate professor of psychiatry at the School of Medicine, University of California, San Diego. "This is not a mutually agreed upon decision and you feel victimized and stuck."

But it might help, Dr. Moutier says, to be mindful of exactly what your partner is going through, "caring for her mother out of a sense of obligation or guilt."

Dr. Moutier suggests "bringing in a professional therapist for you as a couple to work through this or for you alone or your partner alone, or all of the above." Your partner "may have some issues going on that could benefit from therapy. And if this is truly full-time care, she could burn out quickly and get sick herself. Outside help is essential to consider, but bring it up in a supportive way."

I'm going on vacation and I'm concerned that my folks won't have the caregiving coverage I normally provide when I'm around. I'm thinking about canceling the trip. What do you advise?

First things first: "You should absolutely take the vacation," stresses Brian Gallick, co-founder of carecircle.com, which provides online scheduling resources to help caregivers organize needed help for a loved one. "You can't deny yourself a life because you're taking care of a parent or you wind up resenting them, and that's not healthy."

For both your peace of mind and that of your parents, there are several options for coverage while you're away. "Local friends and family are a wonderful way of filling in, and hopefully some are already involved," says Gallick. "If this is a thin group to draw from, there are also church groups, the Boy Scouts and civic groups such as Rotary Club and Kiwanis. And you can call the local high school guidance counselor, who may have student groups visiting seniors."

Another option, he points out, is to "begin a paid relationship with a caregiving service. It may even be good to establish a relationship with them now, to have them come in an hour a week."

The important thing, Gallick says, is to "plan and be aware of what resources are available to you, so you can take a break to get recharged."