Caregiver Support

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."

When my wife was in the hospital recently, I had some contact with the in-hospital patient advocate. It’s an impressive title, but what exactly does this person do?

In-hospital patient advocates are typically employed through a hospital’s social services department, and most of their duties fall within this area, notes Nancy Davenport-Ennis, founder and CEO of the Patient Advocate Foundation. “Their role is to help create an easy process for you to move from one point of care to another in the hospital, and to help patients negotiate social-service needs as part of their discharge plan.”

Davenport-Ennis stresses the three main areas of concern for such advocates. “First, who will be helping take care of the patient when he or she goes home, especially if the person is elderly or at all infirm?” Second, she says, is to reach out to pharmaceutical manufacturers when patients require certain expensive or non-covered medicines when they get home. “And third, Davenport-Ennis sums up, the advocate may also address issues to ensure follow-up care.”

Usually, she points out, a hospital employs only one such advocate. “So, the stronger an advocate you are for your loved one, the more interaction you’ll have with this advocate.”