Stage Two, section 1: Help From Family and Friends

Study the list of family and friends you identified as a beginning caregiver, give specific suggestions to anyone who offers help, and accept all the help you are offerered. If something offered isn't anything you can use, make an alternate suggestion. Stage two caregivers need to find and accept informal support.

Asking Your Family for Help

Beginning caregivers were encouraged to hold family meetings to ask for help from immediate family and extended family members. If you didn't do that then, consider it now.

If you and your care receiver live in Florida while most of your family members live in other states, your only family support may be telephone calls, cards, e-mails, and occasional visits. Let relatives know how much these mean and keep them informed of changes in the situation you are facing with your care receiver. If they are planning to visit, make certain that you aren't expected to cook for them and entertain them as in the past.

Keep thinking of specific ways relatives can help you while they are visiting and throughout the year. Ask again as your caregiving responsibilities increase. Sometimes relatives will come stay with your care receiver for a week so that you can have time off for a trip to visit your sister, a vacation, or a convention for an organization important to you. If no one offers, it is reasonable to ask someone in your extended family for specific help such as a respite visit to give you a break from caregiving. For more ideas on how to get help from your siblings, see Stage One, section 1.

Caregiving can be expensive You and your care receiver may find yourselves paying for home modifications, services, and medical supplies not covered by insurance or a government-funded program. Sometimes relatives who are not close geographically want to do something but don't know what to do unless you give them specific ideas.

If you hesitate to ask your extended family for financial support, suggest some gifts to save you not only money but also time and strength. For instance, they could give you frozen meals, caregiving books, lawn services, bus passes, and prepaid drug store gift certificates. Some of these can be ordered online or purchased in their state and mailed to you. For more information, see "Gifts for Caregivers" in the ore Resources and Tips section of this Handbook.

Speaking Up

As a caregiver, there will be many times, with professionals as well as with relatives and friends, when you need to speak up for yourself and for your care receiver. This is not easy for many caregivers, who may choose not to make the effort. We believe that the effort is worth it. A good book on this subject is The Fearless Caregiver - How to Get the Best Care for Your Loved One and Still Have a Life of Your Own, edited by Gary Barg, Editor in Chief of Today's Caregiver Magazine. This comforting book, which begins with "The Fearless Caregiver Manifesto," will encourage you to "trust your instincts," and to rethink the way you see your role in your care receiver's "care team." For more information, see Caregiver Books and Videos in this Handbook.

A number of web sites have information to help caregivers learn to speak up. Read "Ten Tips for Family Caregivers" on the National Family Caregivers Association (NFCA) web site, www.nfcacares.org. While there, you may want to read about or to participate in the National Family Caregiver Story Project. A web site called Empowering Caregivers, www.care-givers.com, offers emotional and spiritual support. (Note the hyphen in this address - without it you go to a different site.) Many other caregiver web sites offer encouragement and tips on how to ask for help. See the list of Caregiver Web Sites in this Handbook.

Asking Your Neighbors for Help

In many neighborhoods today, residents don't visit each other - at the most, they may just wave or say hello. One caregiver told us that all she received from her neighbors was unwanted advice about what decisions they thought she should have made. She added sadly, "Of course, they haven't walked in my shoes." While there is always the chance that one of your neighbors will be insensitive, we believe it is worth the risk to talk to your neighbors about your caregiving needs and how they can help. This could be especially important if you do not have friends or family living nearby.

Caregivers hesitate to ask neighbors for help, thinking that they would be imposing if the neighbors did not offer first; but most neighbors will not realize that their help is needed unless they are asked. Try requests like these:

• "I miss my wife's cooking now that she is ill. I'm struggling just to heat frozen dinners, and I know you're a good cook. Could you help me learn to cook a few simple meals or bring us some home cooking once in a while? It would be such a relief to me, and I could pay for the ingredients."

• "I know you and Dad used to see each other when walking your dogs. Dad can't walk Toby now, and I wonder if you might stop by and offer to walk him once a week? I'll give him a walk when I'm in town most Saturdays, so midweek would be good. If you agree, maybe you can help convince Dad to try this plan."

• "You probably heard that my husband is sick. Sometimes I can't leave him to go grocery shopping, and I need someone to go to the store for us or stay with John while I go. May I put your telephone number on my list to call in an emergency?"

You may be surprised to find people willing to do even more than you ask of them once they are alerted to your needs. Also, if your care receiver has a condition that causes wandering, the neighborhood will be alert to help guide him or her home.

If you feel that you just cannot bring yourself to ask people for help if they didn't offer first, at least write down the telephone numbers of the friends or neighbors who did offer to do something and list what they offered. Questions to ask in order to clarify a vague offer of help are included in Stage One, section 1.

Now is not the time to say, "No thanks, we can manage." Accept their meals, visits, shopping, and lawn mowing, or suggest other ways they can help.

Finding Ways to Take Breaks

A break from caregiving is called respite care. Encourage friends and neighbors to visit your care receiver for a few hours at a time, sometimes when you are there, but mostly as respite care so that you can get away. In addition to being able to take care of chores like grocery shopping, you need time away from the care receiver to go to the doctor and hair salon, attend caregiver support groups and workshops, and do other nice things for yourself. This could be a drive to the beach or a visit to a library, art museum, or day spa. If there are times of the day such as your care receiver's bath time when you do not want visitors, let your friends and neighbors know that. Perhaps one person can stay with your care receiver while another takes you out for a meal and concert. This gives you a chance to maintain a friendship while taking a break from caregiving. It?s also nice for you and your care receiver when a relative, friend, or neighbor takes your care receiver on an outing without you.

It is vital for you to find ways to take regular breaks from caregiving and to stay in touch with the world outside your home. Some caregivers have found relief by actually volunteering for a local charity just to get out in the world and have a change of pace. For more information about volunteer opportunities, call 211 (not the emergency number, 911) or the Senior Helpline at 1-800-861-8111. For Pinellas County, you can also visit the 211 Tampa Bay Cares web site at www.211tampabay.info. This organization refers people who want to volunteer to agencies needing help and helps agencies find volunteers. 211 Tampa Bay Cares is also a resource for information about support groups and agencies that serve people with various needs. The 211 line is available 24 hours a day with staff trained to help those in crisis as well as those who just need information.

Help from relatives, friends, and neighbors is called informal support. Help from faith communities (religious organizations) is also informal support. For more about that, see Stage Two, section 2. For more information about formal services that can provide a break from caregiving, see Stage Two, section 5.