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A: Often families try to set up periodic meetings, depending on the specific situation. Many set up family conference calls or use email, again the frequency being based on needs. Communication could be monthly to discuss a parent with minimal needs, or daily if there is an emergency or crisis.
There are also programs to help everyone stay in touch, and even organize assistance. For example, www.CaringBridge.org, is a free website that supports and helps families connect. The book, Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill (Fireside, 2004; $14) by Cappy Capossela and Sheila Warnock, offers a model for creating and coordinating teams of family, friends, neighbors, co-workers and acquaintances. The website is www.sharethecare.org.
Article provided by Caring Today magazine and www.caringtoday.com
A: Some important resources include doctors, nurses, social workers, company Work/Life benefits, Employee Assistance Programs, geriatric care managers and elder care attorneys. You can use the Eldercare Locator by calling (800) 677-1116 or go online at www.eldercare.gov to find out what specific home- and community- based services are available from you local Area Agency on Aging. Local houses of worship often have strong volunteer programs. This investigative work can be divided among family members.
A: You may step into the role of caring for a relative with significant health needs because of a crisis such as a fall, heart attack, stroke or accident, or because of escalating memory or behavioral problems. Your loved one’s family, which has been molded by routines and roles that have been solidified with time, might be in a state of disorganization, even chaos in the early stages of caregiving, notes Carolyn McIntyre, LCSW-R, CEAP. The “normal” ways the family has taken care of itself can no longer continue, and new roles will emerge.
First, the siblings and spouse of the loved one begin to sort through who is available to provide care. This phase can go smoothly if all are in agreement about who is going to take on more responsibility, but it may involve conflict. Longstanding family tensions may surface, says McIntyre. Still, it's crucial that family members ask themselves: What does our loved one need?
You shouldn't underestimate the challenge. The best outcome occurs when everyone chips in, researching literature, organizations, and websites that could be helpful, and sharing this information with each other.
Note: In your discussions, be sure to build in—and insist on—respite care for the family member(s) who take on most of the day-to-day care.
A: Since many tasks may need to be managed, it often works best to assign the person with the best skills to the relevant task. Identify the tasks with which each person is most competent, perhaps matching communications styles, interests and comfort levels. This will lead to a clear management plan. Part of the management includes organization of all information about a loved one’s personal, health, legal and financial affairs. Often there is one family member who is close by and therefore the person who can be the most current on any changing health status.
A: Definitely, and as much as possible. Be open with your parents about your observations. Involving them is a clear demonstration of respect and love. It also brings dignity, peace and self-affirmation to a delicate situation. And it lifts the sense of isolation and fear during uncertain times. Keep your parents’ dignity in mind—and in the forefront— especially because these types of discussions may cause some controversy with family members who want to “protect” parents from reality.
A: This is a common term—and a quick way of saying “activities of daily living.” These activities include bathing and showering, dressing, getting in and out of bed or a chair, using the toilet and eating. Persons limited in their ability to perform these activities need to be assessed. The reason could be temporary, due to a recent hospitalization or the effects of certain medications, or signify the onset of chronic limitations. Assessing any limitations can help family caregivers determine if day-to-day assistance is needed—and what kind of help is appropriate.
A: When you visit your parents, be observant. Do they seem to be coping well? Is one parent doing less well than the other? Are papers in order and bills being paid? Is their clothing clean? Are they able to care of themselves and managing the essential activities of daily living? Is there outdated food in the refrigerator? How are their spirits?
If you see any warning that they are not coping, it may be time for you and other family members to start helping in whatever ways seem needed.
A: 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.
A: "Have your mom say to her husband, ‘Your protests are fine but this is my house, too, and I need help,'" says Gary Kennedy, MD, a geriatric psychiatrist at Montefiore Medical Center in New York. "It requires a family meeting and telling him that, if he wants to preserve his autonomy, he has to share a bit of it. It might start with your helping for half a day a week with housekeeping." It's important, says Dr. Kennedy, to stress that your mom has rights, too. "If she's exhausted, what happens to her husband?" he asks. "It's really in your stepdad's best interest."
Part of the dilemma, explains Dr. Kennedy, is that "none of us is happy to admit we have to depend on others. He might complain and be angry, but that's okay as long as he gets the care he needs and Mom gets a break."
A: "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."
A: If you have any doubts about your status, Carolyn McIntyre, LCSW-R, CEAP, suggests you take her "Are You a Caregiver" Quiz. Think back over the last year and ask yourself the following questions:
Have I . . .
- Taken my loved one to a healthcare professional or spoken with any healthcare professionals about my loved one's health?
- Helped my loved one dress, bathe, prepare or eat a meal?
- Administered to my loved one's medical needs?
- Assisted my loved one with shopping, paying bills or doing chores around the house?
- Arranged for outside services for my loved one, such as nurse's aides, transportation, housekeeping, medical care or other personal services?
- Handled issues relating to Medicare, Medicaid, Social Security, health insurance or other aspects of my loved one's finances?
- Been involved in decisions regarding my loved ones housing options or housing needs?
- If you answered yes to any of these questions, you are a caregiver.
A: It is important to know what to look for in order to help your children in this challenging time, says Anne Whyte, MA, NCC, who offers these suggestions:
Be aware of signs that your child is feeling distress, such as changes in normal eating, sleeping or playing habits; changes in grades; crying spells or angry outbursts; increased nightmares and fears; and clinginess. Seek advice and help from professionals if these signs persist.
Set aside distraction-free time with your children so that they can voice their feelings and concerns in all areas of their lives. Play a board game, take a walk or simply flop on the floor next to them, then ask open-ended questions and be sure to let them talk more than you do.
Be alert to the signals you convey - and the words that you say - to your child about an ill or elderly family member. If children sense stress or resentment on your part, they may mirror your behavior toward the person or feel helplessly conflicted about two people they love.
Be sure to provide children a forum to express their concerns, a place where they can ask questions and say the things they might not want you or other family members to hear. Counselors and support groups are available everywhere to help even the smallest among us.
And, although it is not always easy, try for some occasional respite from constant caregiving for yourself to keep life in perspective for you and all of your family. Caregivers need time to refuel emotionally, physically and spiritually; you cannot share what you do not have.
A: Suzanne Mintz, co-founder and president of the National Family Caregivers Association (NFCA), likens the caregiver who is about to suffer burnout to a teakettle. "When all the heat and steam build up inside and you hear the kettle whistling," she says, "it is like a scream for help."
To say the least, caregiving is physically and emotionally demanding work. It can take a toll so great that many caregivers feel they simply cannot go on any longer.
"If you don't take care of yourself, you will end up giving a piece of yourself away, and then more and more pieces of yourself," says Colette H. LaFosse, MSG, director of rehabilitation and recovery programs with the Colorado-based National Stroke Association. "You will eventually lose who you are. When your caregiving duties end, you will have to completely re-create who you once were."
LaFosse advises that caregivers take time out for themselves, whether it’s 15 minutes for a cup of coffee, or to chat on the phone with a friend at least once a day—or as often as you can fit such breaks in. "Caregivers need to take time out—even if it is only a few tiny moments—to step back and relax…it is important to take care of yourself both physically and emotionally," she says.
Two tips to keep in mind:
Collect on offers of help. When friends or others say you should let them know if there's anything they can do, write their contact information in a notebook to assist you in remembering who has volunteered to help. Also, make a list of specific things—a casserole for the freezer, two hours of coverage for you to get respite time, a shopping run—so that you can suggest the help you really need.
Find the de-stresser that works for you. Explore different ways to enjoy yourself and lessen the stress. Meditation works for some caregivers, others swear by the benefits of practicing yoga, while many seek comfort by keeping a day-by-day journal. What's important is making the most of ways you know will help you relax.
A: You should have an old-fashioned family powwow to:
Assess the family network and individual skill sets
There will be multiple tasks to be managed, and assigning individuals with the best skills to the relevant task will lead to a clear management plan. Identify the tasks with which each person is most competent, perhaps matching communication styles, interests and comfort level.
Agree to roles and reassess them regularly
Clarity of roles and responsibilities will go a long way toward minimizing the inevitable conflicts likely to arise as you deal with complex and emotional issues.
A: Carolyn McIntyre, LCSW-R, CEAP, suggests that once you are in a caregiver role, an excellent place to learn about resources is through your employer.
First, ask your human-resources representative if your company has an employee assistance program (EAP) or a work/life benefit.
The EAP usually offers free phone consults and a few face-to-face appointments with a licensed social worker or psychologist. This counselor will be available to listen to your concerns and feelings and to provide help in finding resources.
The work/life benefit offers only free phone consults with counselors who do database searches to find eldercare resources in your area. They will also do searches for licensed childcare services and assistance for children with special needs.
If you are wondering who should know about your situation, McIntyre’s advice is to consider the work culture as well as your relationship with your boss or co-workers. If you have a supportive boss and a flexible work environment, and you are viewed as a strong contributor to the team, then it may be safe to give them limited amounts of information. When they respond in a supportive way, their compassion and support can be invaluable and serve as another resource.
Working Caregiver Reminder: Coordinate your vacation time with your care-support team, says McIntyre. Confident that your loved one's care is covered, you'll be able to relax and get a needed break from work—and caregiving.
A: “Find a way of talking to your mom about it in an extended dialog,” says Gary S. Moak, MD, president of the American Association for Geriatric Psychiatry. “Wait for the opportunity. [When] she brings up something like ‘It’s hard to get around,’ ask what she would think about living with you.”
It is, however, just as vital to consider all sides of your plan. “Concerns about safety are important, but that’s only one value,” explains Dr. Moak. “Independence is a high value as well. This move could leave your mom depressed and resentful. There may be community-based home health services that could improve her safety at home.”
The other vital link in this decision is your mom’s doctor. “Is her impaired safety related to problems that might be treatable?” asks Dr. Moak. “Getting the doctor’s opinion could be useful in actualizing this transition.” Finally, he suggests that “getting geriatric mental health professionals involved may help Mom move to a position of more acceptance.”