Stage 1: The Expectant Caregiver

Keyword: ASK
Purpose: Preparation

At this stage you have not started caregiving, but acknowledge that you may soon begin this role either with your spouse, a parent, sibling, child, or friend.
Now is when you do your research about the disease or medical condition. Spend time thinking about and then asking questions of physicians, lawyers, and financial planners. Include family members in the inquiry process. It is most important is to ask questions of the person for whom you will be caring. Learn what they want, what they don’t want, what their hopes are, and what their fears are.

Look at the website section on planning for resources on advance-care planning, advance directives, durable power of attorney etc.

Questions:

  • Do we have the following documents completed: an advance directive and a durable power of attorney for health care and finances; do we need a will?
  • Have financial matters been discussed with an attorney or financial advisor?
  • Does my company provide for time off through the Family Medical Leave Act? Does my employer have other policies or programs to help keep working caregivers in the work force? Meet with your Human Resources Department.
  • Are there other friends or family members willing and able to assist with caregiving? What roles can they play?
  • What types of insurance does my loved one have and what do the policies cover? What benefits are available? Find insurance policies or meet with your insurance agent.
  • Determine monthly income from pensions and social security; identify annuities and stock investments that can be of use to cover expenses. Make a list of bank accounts.
  • Research community health care options: retirement communities, assisted living facilites, home health care agencies, nursing homes, private caregivers, and homemaker agencies. Call and get brochures and pamphlets.
  • Assess whether your loved one will be able to stay in his or her current living situation if they are in a wheelchair? Bedbound? Will you need safety equipment installed in the bathroom? What companies can do the installations? Will you need a ramp built for access into and out of the home?
  • Who will be the health care providers to provide medical care? Write down their names and phone numbers. Make a list of medications being taken and learn why they have been prescribed.
  • Do I need the help of a geriatric case manager to help me with finding others to help with care, to oversee hiring of in-home caregivers because I am not there, to provide medical management oversight, to communicate with family and professionals on my behalf, to assist with legal and financial aspects of caregiving, and to monitor for safety and security? Use this link to learn more about geriatric case managers and use the tool on this website to locate one near where your loved one resides.

http://www.caremanager.org/why-care-management/what-you-should-know/

  • Start a file drawer to stay organized with receipts, information sheets, and documents.
  • If you do not live with the person you will be caring for, start to learn about their likes, dislikes, and habits. Learn where he or she worships, goes to the library, participates in social activities, etc. Make a list of best friends and their phone numbers. Learning about your loved one’s life now will help you know when problems are starting to begin and when you might need to begin intervening and helping more with care.
  • Start reflecting on your feelings about becoming a caregiver. What will be the things that will be hard for you? What areas will be stressful? How do you handle stress? What can you do to alleviate stress? Practice asking for help.
  • Some caregivers find it helpful to start a journal or join a caregivers’ support group. Caregiving.com is an online community of family caregivers sharing stories, support, and solutions. Here is the link: http://www.caregiving.com
  • Think about starting an exercise program to stay in shape. Eat healthy. Many caregivers neglect their own health, which can in the long run lead to problems preventing them from being able to provide care for an indefinite time.
  • Document your loved one’s life to help him or her leave a legacy of pictures, video or audio recordings, collections of recipes, letters, poems, and records that reflect his or her life and achievements. Include the whole family. In the planning section of the Bridges website, you can find information about ethical wills.
  • Look for inspirational books or online sources that can help keep you focused and remind you how much you are loved.
  • Find books or websites that you can reference as you go through the different stages. An excellent handbook is Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn, MD, Joan Harrold, MD, and Janice Lynch Schuster, MFA. Other resources and website links can be found throughout this website on different content topics.
  • Reconnect with your faith community. During caregiving you might have the need to speak with your spiritual counselor or want to reconnect with your spiritual side. Further along in the caregiving journey, you may feel isolated from your faith community because you physically cannot attend services. Now is the time to explore options for spiritual support that can be provided at home. For example, your church may broadcast services on the TV or radio or have volunteers that visit homebound parishioners.

Step 2: The Freshman Caregiver