So Far Away: Twenty Questions and Answers About Long-Distance Caregiving
Finding More Help
How can I be sure my father's caregiver isn't mistreating him or taking his things? Everything has been fine so far, but I'm worried that if Dad's memory deteriorates, something might happen.
From a distance, it can be hard to assess the quality of your father's caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going. Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help. You can stay in touch with your father by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and basic neglect.
Sometimes the abuser is a hired caregiver, but other times it is someone your father knows. The stress that may happen when adult children care for their aging parents or when another older adult, like a spouse or sibling, is a caregiver can take a toll on everyone. In some families, abuse continues a long-standing family pattern. In others, the older adult's need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer's disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily. But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses.
If you feel that your parent is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, contact someone who can act on your behalf: your parent's doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.
Signs of self-neglect
Self-neglect describes situations in which older people put themselves at high risk. People who neglect themselves may have a disorder which impairs their judgment or memory. They may have a chronic disease. Knowing where to draw the line between a person's right to independence and self-neglect can be hard. Here are some signs that may mean it's time to intervene, although some may be hard to recognize during a short visit by a long-distance caregiver:
Elder abuse is causing physical, emotional, or financial harm to an older person, whether intentionally or unintentionally. There are many possible signs of abuse:
If your parent is in a long-term care facility, the facility must take steps to prevent (and report) abuse. Nursing homes and hospitals are subject to strict state licensing requirements and federal regulation Even so, neglect and abuse can occur. Physical abuse by other residents is also possible. For more information, contact the National Center on Elder Abuse. You might also talk with your state or local long-term care ombudsman; contact your state government, your Area Agency on Aging, or the National Long-Term Care Ombudsman Resource Center.
How can I lighten the load for my mother? Over the years, Dad's condition has worsened, and now when we talk, Mom sounds exhausted.
Your mother may be hesitant to ask for help or to say that she needs a break. Be sure to acknowledge how important her care has been for your father. Also, discuss the physical and emotional effects caregiving can have on people. Although caregiving can be satisfying, it also can be very hard work. Offer to arrange for respite care.
Respite care will give your mother a break from her caregiving responsibilities. Respite care can be arranged for just an afternoon or for several days. Care can be provided in the family home, or your dad may spend the time in an adult day services program or at a skilled nursing facility. The ARCH National Respite Locator Service can help you find services in your parent's community. You might suggest your mother contact the Well Spouse Association—it offers support to the wives, husbands, and partners of chronically ill or disabled people and has a nationwide listing of local groups.
Your parents may need more help from home-based care to continue to live in their own home. Some people find it hard to have paid caregivers in the house, but most also say that the assistance is invaluable. If your mother is reluctant, point out that with an in-home aide, she may have more energy to devote to your father's care and some time for herself. Suggest she try it for a short time, and then decide.
In time, your father may have to move to assisted living or a nursing home. If that happens, your mother will need your support. You can help her select a facility. She may need help adjusting to his absence or to living alone in their home. Just listening may not sound like much help, but often it is.
Should I encourage my parents to get more help? The last time I visited, my mom seemed very confused, like she just wasn't quite there. Dad didn't seem to notice and didn't want to talk about it when I asked him.
If you do not see your parent often, changes in his or her health may seem dramatic. In contrast, the primary caregiver might not notice such changes or realize that more help, medical treatment, or supervision is needed. Or, the primary caregiver might not want to accept the fact that the health of his or her spouse or parent is failing. Sometimes a geriatric care manager or other professional is the first to notice changes. For families dealing with Alzheimer's disease or another dementia, it can be easier to "cover" for the patient—doing things for him or her, filling in information in conversations, and so on—than to acknowledge what is happening.
A few good conversation starters are:
If you thought there might be a change in Aunt Joan's condition, whose opinion would you seek?
I didn't notice Dad repeating himself so much the last time I was here. Do you remember when it started?
Some changes may not be what you think. Occasional forgetfulness does not necessarily indicate dementia. Before you raise the issue of what needs to be done, talk to your parent and the primary caregiver about your concerns. Try not to sound critical when you raise the subject. Instead, mention your particular worry, for example, "Mom, it looks like you don't have much food in the house—are you having trouble getting to the store?" and explain why you are asking. Listen to what the primary caregiver says about the situation and whether he or she believes there are problems.
Discuss what you think could be done: Would you like me to arrange to have groceries delivered on a regular basis? Do we need to get a second opinion about the diagnosis? Can you follow the medication schedule? Would you like some help with housework? Try to follow your suggestions with practical help, and give specific examples of what you can do. For example, you might arrange to have a personal or home health aide come in once a week. You might schedule doctors' appointments or arrange for transportation.
In some cases, you may have to be forceful, especially if you feel that the situation is unhealthy or unsafe. Do not leave a frail adult at risk. If you have to act against the wishes of your parent or the primary caregiver, be direct and explain what you are going to do. Discuss your plan, and say why you are taking action.
My mom is getting frailer, and my dad admits that keeping up with chores around their house is getting to be too much. How can I help my folks decide if it's time for them to move? I don't think they can stay in their own home much longer. What are their options? I'm at a loss.
The decision about whether your parents should move is often tricky and emotional. Each family will have its own reasons for wanting (or not wanting) to take such a step. One family may decide a move is right because the parents can no longer manage the home. For another family, the need for hands-on care in a long-term care facility motivates a change. In some cases, a move frees up cash so that the parent can afford a more suitable situation. For others, the desire to move to a safer location is hampered by a lack of funds to cover the cost of the new home.
In the case of long-distance caregivers, the notion of moving can seem like a solution to the problem of not being close enough to help. For some caregivers, bringing a sick or aging parent to their own home or community can be a viable alternative. Some families decide to have an adult child move back to the parent's home to become the primary caregiver.
Keep in mind that leaving a home, community, and familiar medical care can be very disruptive and difficult for the older parent, especially if they are not enthusiastic about the change. You might first want to explore what services are available in your parents' community to help them in their home—including home health care, housekeeping, personal care, and transportation services. Check with your parents' friends and doctors, a local social worker, senior centers, and other resources in their area and on the internet for possible sources of help.
Older adults and their families have some options when it comes to deciding where to live, but these choices can be limited by factors such as illness, ability to perform activities of daily living (for example, eating, bathing, using the toilet, dressing, walking, and moving from bed to chair), financial resources, and personal preferences. Making a decision that is best for your parent—and making that decision with your parent—can be difficult. Try to learn as much as you can about possible housing options.
Older adults, or those with serious illness, can choose to:
- stay in their own home or move to a smaller one
- move to an assisted-living facility
- move to a long-term care facility
- move in with another family member
Some families find a conference call is a good way to talk together about the pros and cons of each option. The goal of this call is to come up with a plan that works for everyone, especially your parent. If the decision involves a move for your mom or dad, even from a distance, you could offer to arrange tours of some places for their consideration.
Experts advise families to think carefully before moving an aging adult into an adult child's home. There are a lot of questions to consider, for example: Is there space in your home? Is someone around to help the older person during the whole day? What are your parents able to do for themselves? What personal care are you willing and able to provide—moving your parent from a chair to a bed or toilet, changing adult diapers, using a feeding tube, for example? What kinds of home care services are available in your community? What kind of specialized medical care is available nearby?
How do we find a nursing home?
If the decision is made that your parent needs the intensive care found in a nursing home (skilled nursing facility), you could talk with his or her doctor or a social worker about which facilities would be appropriate. Once you have the names of several places, the primary caregiver could visit them and meet with staff there. Then, when you have narrowed down the list, you can compare the quality of the remaining homes at Nursing Home Compare on the Medicare website, www.medicare.gov, or call Medicare for help.
What happens if my mother gets too sick to stay at home? She is terrified of ending up in an institution and has asked me to promise that I won't "put" her in a nursing home. It is hard for me to figure out what to say.
If you are over 40, chances are you've had a similar conversation with someone you love. It might come up if you see a segment about nursing homes while watching the evening news. "I never want to be in a nursing home," your mother says. This thought usually reflects what most of us want: to stay in our own homes, to maintain independence, to turn to family and friends for help.
Sometimes, however, parents want their adult children to promise that they won't go to a nursing home. Think carefully before doing so. According to the Centers for Medicare & Medicaid Services, "Quality of care means doing the right thing, at the right time, in the right way, for the right person, and having the best possible results." Agreeing that you will not "put" someone in a nursing home may close the door to the right care option for your family. It requires you to know that no matter what happens you will be able to care for your parent. The fact is that for some illnesses and for some people, professional health care in a long-term care facility is the only reasonable choice.
Base your promises and decisions on a realistic assessment of the current situation or diagnosis, and realize that you might need to revisit your agreement.
When faced with a parent who is truly ill or frail, long-distance caregivers may find that some promises hamper their ability to do what is necessary, either for their own health or for their parent's wellbeing. Many people discover too late that promises they made ("Of course you will be able to die at home.") cannot be kept.
Try to focus your commitments on what you know here and now. If asked to make a promise, you could say something like, "Dad, I will make sure you have the best care we can arrange. You can count on me to try and do what's best for everyone. I can't think of a situation where I'd walk out on you." Base your promises and decisions on a realistic assessment of the current situation or diagnosis, and realize that you might need to revisit your agreement. Your father's condition might change. Your circumstances might change. You truly do not know what will happen in the future—disease and illness can necessitate enormous adjustments. And, of course, it's not only your parent's health that changes—your own health may alter over time.
If you’ve already made a promise to your parent, remember you can bring the subject up again. You can modify your answer to something more specific, something you feel you can undertake. As hard as that conversation might be, it may be better than risking the guilt of a promise not kept.
When Linda's father, Neil, was diagnosed with congestive heart failure, she was 4 months into her second pregnancy. Her mother had died several years earlier. During her mother's illness, Linda, then single, had gone home almost every weekend to help her father and be with her mother. After her mother's death, she stayed close to her dad, even helping him move to an assisted living facility in his own town. Neil settled easily into the facility. Over time, Linda did her best to visit. With two young children, she couldn't get there regularly, but she made a point of calling her dad twice a week. Eventually, it became harder for Neil to catch his breath, and on some days he was too tired to get out of bed. He died quietly one night in his sleep. Linda said she had few regrets; she had done everything she could do to let her father know how much she cared. Knowing this comforted her.
What if I'm told Mom only has a few months to live? I can't fly out to be with her for that long, but I want her to know that I am here for her.
The news that a family member is dying is difficult to hear—and yet, it is a basic part of life. When you hear that a parent has a terminal illness, you may be flooded with emotions: sorrow, disbelief, anger, anxiety. It can be hard to know what to do or what to say. Fortunately, many organizations are working to improve the lives of dying people and their families. Think about a hospice program. Hospice provides special care for people who are near the end of life. Check with Medicare for information on hospice benefits.
Talk to your own friends, clergy, or colleagues. Many have probably experienced the serious illness and death of a beloved friend or family member. Exchanging stories can help you cope with your own impending loss and might provide some ideas as you try to decide what to do.
Contact your parent's doctor and talk to your own healthcare provider as well to find out what will need to be done, the kinds of care that your mother or father is likely to need, and how you can arrange for it to happen. And if there is a primary caregiver, ask what you can do for them.
Be there for your parent when you can. Spend time with your mom or dad and let your parent know the important part he or she has played in your life. When you can't be there, you can send notes or cards or a taped message, in addition to calling.
Some people find that it is very hard to talk about death and dying and will go to great lengths to avoid the subject. Difficult as it is, talk to your parents about what is going on, but if you can't have that conversation, don't let that add to your worry. There is no single "right" way to approach the death of a loved one.
Publication Date: June 2011
Page Last Updated: March 24, 2014