Caregiving : How will I know if help is needed?

by National Institute on Aging

(Page 2 of 7)

How will I know if help is needed? Uncle Bill sounds fine on the phone, how can I trust that?

In some cases, the sudden start of a severe illness will make it clear that help is needed. In other cases, your relative may ask for help. When you live far away, you have to think carefully about possible signs that support or help is needed. You might want to use holiday trips home to take stock.

Some questions to answer during your visit include:

• Are the stairs manageable or is a ramp needed?
• Are there any tripping hazards at exterior entrances or inside the house (throw rugs, for instance)?
• If a walker or wheelchair is needed, can the house be modified?
• Is there food in the fridge? Are there staple foods in the cupboards?
• Are bills being paid? Is mail piling up?
• Is the house clean?
• If your parents are still driving, can you assess their road skills?
• How is their health? Are they taking several medications? If so, are they able to manage their medications?
• What about mood: Does either parent seem depressed or anxious?

What can I really do from far away? I don't feel comfortable just jumping in.

Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver who is in the home. Long-distance caregivers can play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating assisted living and nursing home care. Some long-distance caregivers help a parent pay for care, while others step in to manage finances.

Caregiving is not easy for anyone, not for the caregiver and not for the care recipient. From a distance, it may be especially hard to feel that what you are doing is enough, or that what you are doing is important. It usually is.

Long-distance caregivers might find the following titles of particular interest:

• Home Safety for People with Alzheimer's Disease
• Good Nutrition: It's a Way of Life
• Older Drivers
• Caregiver Guide: Tips for Caregivers of People With Alzheimer's Disease
• Long-Term Care: Choosing the Right Place

Some Good Ideas

Know what you need to know. Experienced caregivers recommend that you learn as much as you can about your parent's illness and treatment. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in disease management. It can also make talking with the doctor easier. Learn as much as you can about the resources available. Make sure at least one family member has written permission to receive medical and financial information. Try putting together a notebook, or something similar, that includes all the vital information about health care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers.

Plan your visits. When visiting your parent, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your parent ahead of time and finding out what he or she would like to do. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to go to the mall or to visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother's physician? Decide on the priorities and leave other tasks to another visit.

Remember to actually spend time visiting with your family member. Try to make time to do things unrelated to being a caregiver. Maybe you could rent a movie to watch with your parents, or visit with old friends or other family members. Perhaps your aunt or uncle would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone.

Get in touch and stay in touch. Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff to get up-to-date information about a parent's health and progress. If your parent is in a nursing home, you can request occasional teleconferences with the facility's staff. Some families schedule conference calls so several relatives can participate in one conversation. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. The human touch is important too. Try to find people in your parent's community who can be your eyes and ears and provide a realistic view of what is going on. In some cases, this will be your other parent.

Help your parent stay in contact. For one family, having a private phone line installed in their father's nursing home room allowed him to stay in touch. For another family, giving the grandmother a cell phone (and then teaching her to use it) gave everyone some peace of mind. You can program telephone numbers (such as doctors', neighbors', and your own) into your parent's phone so that he or she can speed-dial contacts. Such simple strategies can be a lifeline for you and your parent. But be prepared - you may find you are inundated with calls from your parent. It's good to think in advance about a workable approach for coping with numerous calls.

Get a phone book, either hardcopy or online, that lists resources in your parent's neighborhood. Having a copy of the phone book for your parent's city or town can be really helpful. The "Blue Pages" can provide an easy guide to State and local services available in your parent's hometown.

How can my family decide who does what? My brother lives closest to our grandmother, but he's uncomfortable coordinating her health care.

Be sure to talk with other family members and decide who will be responsible for which tasks. Think about your schedules and how to adapt them to give respite to a primary caregiver or to coordinate holiday and vacation times. One family found that it worked to have the long-distance caregiver come to town while the primary caregiver was on a family vacation. And remember, if you aren't the primary caregiver, offering appreciation, reassurance, and positive feedback is also a contribution.

SKnow Your Strengths/Set Your Limits

If you decide to work as a family team, it makes sense to agree in advance how your skills can complement one another. Ideally, each of you will be able to take on tasks best suited to each person's skills or interests. For example, who is available to help Mom get to the grocery store each week? Who can help Dad organize his move to an assisted living facility? After making these kinds of decisions, remember that over time responsibilities may need to be revised to reflect changes in the situation or your parent's needs. Be realistic about how much you can do and what you are willing to do.

When thinking about your strengths, consider what you are particularly good at and how that skill might help in the current situation:

• Are you best on the phone, finding information, keeping people up-to-date on changing conditions, and offering cheer?
• Are you good at supervising and leading others?
• Are you comfortable speaking with medical staff and interpreting what they say to others?
• Is your strongest suit doing the numbers - paying bills, keeping track of bank statements, and reviewing insurance policies and reimbursement reports?

When reflecting on your limits, consider:

• How often, both mentally and financially, can you afford to travel?
• Are you emotionally prepared to take on what may feel like a reversal of roles between you and your parent - and to respect your parent's autonomy?
• Can you be both calm and assertive when communicating from a distance?
• How will your decision to take on care responsibilities affect the rest of your family and your work?

About the Author

www.nia.nih.gov
NIA, one of the 27 Institutes and Centers of NIH, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. In 1974, Congress granted authority to form NIA to provide leadership in aging research, training, health information dissemination, and other programs relevant to aging and older people.