Information Is Good Care

During the next few weeks, we're going to discuss gathering the information that will help you during your caregiving journey. I've heard the saying "Information is Power", but in caregiving, "Information is Good Care". Having the right information at the right time is important in any aspect of life, but in caregiving that information becomes your bedrock. And you have an advantage. I know--and I'm sharing with you--the types of information you're going to need in advance. Even if you're at the beginning of the caregiving journey, you already have some idea of what you'll need. As a caregiver to your parent, at some point, you will need to know and be able to communicate:

• Your parent's physical status--health, abilities, mental acuity
• Where your parent's household, medical and financial records are filed or stored
• Who will be helping with your parent's care--family, friends, professionals
• Information about your parent's house
• Personal financial resources available for care--your parent's, yours, your family's
• Housing options for your parent
• Legal issues that will guide you handling your parent's affairs
• Insurance issues surrounding your parent's care
• Your parent's spiritual needs
• Your parent's wishes about their care, end-of-life decisions, living arrangements

In the long run, especially if your parent does not live with you, caregiving may be less about personal, physical, active care tasks but more often a series of information gathering expeditions and communicating decisions, managing resources, taking copious notes, and organizing others to provide actual care.

When you accept the job of caring for a parent, you do just that. You accept another job--at least part-time, and full-time if your parent has substantial needs and lives with you.

A lot of papers, e-mails, telephone calls, texts, websites, books, articles, information will be coming your way. Start thinking about how you might organize it so you can refer to it later.

Start now by thinking about the list of types of information listed above that you'll probably need for your parent. In each of those areas, what information about your parent do you already know? How much detail do you have? Do you need more?

What don't you know? In what areas do you feel a need for some serious information gathering? Can you suggest to the rest of us any areas that are particularly pressing?

Write a comment, send me an e-mail.

In the next few weeks, we'll start working through these areas and talk about what you're looking for and how to find it.

Nothing Is Set In Stone

Molly began helping with her father’s care a few months ago and is finding the experience far more difficult than she ever imagined. “I have such a hard time making decisions,” she admits. “What if I make the wrong choice? What if Dad doesn’t like the home nurse I hired? How can I choose when it’s Dad’s health, his life, I’m deciding? I want to do the right thing, but I’m afraid I’ll mess up somehow.”

We all want to do what’s best for our parent. We want to do what will work for us, too. In this striving for the best, for perfection in choosing, remember: there’s one thing certain in caregiving…Change.

Your parent’s condition will improve. Or worsen. Care services that worked well for a while suddenly don’t. The physician who has been seeing your parent retires. The rehabilitation therapist suggests that your parent may not be able to live alone again. The surgery that wasn’t needed last month is now critical.

The decision you made last week was made in last week’s situation and with last week’s information. This week will probably be different. Nothing is set in stone.

Adjustment and change. Normal.

What a relief!

Your first decision doesn’t have to be perfect. It just has to fit the circumstances and information you have that day.

Considering Options
When you’re making a decision that seems particularly difficult or complex, try the following:

• Create a list of alternative choices. Write down as many as you can think of. One of those choices may be to postpone the decision. Brainstorm.

• Evaluate each choice. If you don’t have enough information about a choice, ask questions, find out more. Note the possible positive outcomes to each choice and the possible negative outcomes.

• Weigh the importance of those positive and negative outcomes on a scale from 1 to 10 (1 = I don’t care if this outcome happens; 10 = If this outcome happens, it will substantially affect my life and my parent’s care). There may be many negative outcomes to one choice, but those outcomes may not matter much to you or to your parent’s well-being.

• With your evaluations and the weights of the outcomes in hand, make a choice. Notice that now you have back-up choices if your first one doesn’t work out.

Permanent Consequences
There are some decisions that, by their nature, do have permanent consequences for you or your elder. The choice to remove an artificial respirator when signs of life have faded, the decision for surgery that will remove diseased tissue…these bring a permanent change to a person's health status. Using the suggestion for considering options above still applies, but the outcome weights will be near 10 for some choices. These decisions are particularly difficult.

But over the course of caregiving, nearly all the decisions you make for your parent will not have permanent consequences…inconvenient, less than optimal, aggravating consequences perhaps, but not permanent.

Resist acting or thinking that a decision is one of life-or-death when it is not.

To read more, try:

Simon, Sidney B. Getting Unstuck: Breaking through Your Barriers To Change. Chapter 4: Change and Options. p. 85-114. Grand Central Publishing, 1989.
This chapter provides more details about brainstorming choice options and how making effective decisions keeps you moving forward.

Throughout the caregiving experience, remember that you always have a chance to make changes, to adjust, to do something better, to do it differently. That’s the wonder and happiness of being human. We always have options. Usually more than we imagine. Next time we'll start exploring sources of information that will help rev up your imagination.

Blessings on you and your caregiving!

Your Situation Is Unique

This week here at Parentcare 101, we're talking about some life-long lessons that we caregivers need to take to heart. Today's topic discusses a fact that we often forget. Everyone's caregiving situation is unique. Let me share some stories from caregivers I've met.

Martha lives farthest from her hometown where her father still lives. She gets along well with one of her brothers, but has never felt close to the other two. Now that her father is ailing, she knows that they all need to talk about what’s going to happen, how they will care for him. It doesn’t help that her father is the classic curmudgeon. She dreads the conversation for she knows her brothers will expect her to do everything—and if she’s not careful, she just might take on that traditional role.

Kenneth is an only child. He and his parents have always been close and when his mom and dad both fell ill, he did not hesitate to arrange his life so that he could be with them as much as possible. He commutes the 100 miles several times a week. After a year, his wife can’t understand his continued devotion. She’s not sure she could do that for her parents. But she does understand that the hours Kenneth spends, he gives freely, from love.

Jordan’s father was abusive and walked out on the family when Jordan was 12. Now, when Jordan has a family and a good job, his ailing father is demanding aid from him. Jordan gave his father the number of the Area Agency on Aging in his father’s city and left it at that.

In my own situation, I was very surprised when a social worker commented, “You’re very fortunate, you know. You and your sister are talking and agree on the kind of care your mother should have. And all your relatives are happy to let you do what you want in the situation. That’s pretty rare.”

Family circumstances mold the way we approach a parent’s care. Some adult children freely give their time to their parents out of love. Others must wrest their caregiving from a morass of negative memories. In some families, the siblings are not talking. In some families, parent and child are best friends; in others, there is pitched battle whenever the two meet. Adult children live at varying distances; one with four children, one with none, all of them holding jobs, some married, some not. The variations of family types are infinite.

To add to the confusion, there is no contract between you and your parent, spelling out how much you owe your parent. There was no legal document drawn up at your birth with the mutual obligations specified. There are no guidelines to tell you how much each sibling should contribute or will. You make those decisions for yourself.

Across families, the care choices to be made, questions to be answered and the emotions are often the same—do we use home health care or move Dad to an assisted care facility? I'm so relieved Mom is settled in her new place. Which nursing home? I feel guilty that I’m not doing enough. How much can Mom do on her own? How will we pay for Dad’s care? I'm angry that my sister won't do more.

But for each situation, the caregivers enter uncharted territory. The way the decisions are made and how they are carried out are always different, based on the family situation.

Choose what’s best for the FAMILY.

Your family includes, first of all, YOU. Then comes everyone closest to you : spouse, children, parents and everyone involved with the caregiving: siblings, friends, relatives. That’s a lot of people, all of whom have worries, responsibilities, desires, just like you. Cut yourself--and everyone else--some slack.

What's the point here? There are several. Remember...

· Every family is different, so take ideas from other families, but do NOT compare your decisions against those made by other families. Do what’s best for your family.
· What you can give today may not be the same as what you can give in the future. Revisit your role in the process frequently.
· Review your priorities often; they will change with changing circumstances. How other families care may not be what you’re prepared to give or capable of giving. Recognize this, listen to advice, but remember that your situation is unique.

Think about the specifics of your care situation, the people involved, the finances available, the housing resources available, the relationships. Have you heard of any other caregiving circumstance exactly like yours? Do you listen to advice, but rework it to fit your own circumstances?

Once you’ve decided on what’s best for your family and for you, let go of the anxiety and get on with the doing. Do what you can. It will be enough.

Your First Priority is You

Are you kidding? I have my kids, my job, my spouse, my parent to think about. They’re my top priorities.

Think about your life now.

How do you feel...

When you haven’t gotten enough sleep, haven’t eaten a decent meal in days, have pushed yourself until your head and shoulders and stomach throb with tension?

When you haven’t had a chance in weeks to connect meaningfully with another person, talk out your worries, have fun just doing nothing?

When you haven’t had a moment to yourself in days?

You can't serve others with energy, patience and love when you have less than your best to give.

Making Yourself Your Top Priority Does NOT Mean…
· Ignoring the responsibilities and obligations that you have to your loved ones.
· Refusing to do something for your parent simply because it is “inconvenient” or because you “don’t feel like it”.
· Misusing your choices in life to disregard real needs your parent may have.
. Becoming self-absorbed.

Making Yourself Your Top Priority Means…
· Recognizing that you have a right to your own life, that your needs are just as important as anyone else’s.
· Letting your own life and well-being take precedence so that you will be ready physically and emotionally when you most need it.
· Refusing to give of your time and energy unstintingly to others without giving yourself the same proportion of time and energy.
. Striving for balance within your life so that you are not the last person to whom you apportion your time and effort.

Recognizing your own needs, dealing with your own emotions, getting help when you need it, considering your personal goals throughout the period of your caregiving—all these things insure that you will have the endurance to care effectively for a long period of time, especially if that period of time begins to stretch from months to years. Taking care of yourself is not selfish when you are a caregiver. It is essential.

To maintain your well-being, experts agree that you must pay equal attention to five areas of your life:
1. Physical: the health of your body. Establishing good health habits, nutritious eating, rest, exercise and regular medical check-ups.
2. Mental: keeping a limber mind, learning something new every day, solving puzzles, maintaining a sense of humor, fostering your creativity, organizing your life experience in your mind, the sense of self-worth.
3. Emotional: the capacity to feel deeply, be sensitive to feelings (yours and those of others), a willingness to experience feelings and the appropriate responses to those feelings.
4. Spiritual: The core dimension of you, the profound sense of who you are. Living with a sense of hope, recognizing a set of clear values and a sense of worth and peace. Feeling that there is meaning and purpose to your life. Giving yourself time for quiet, reflection, prayer.
5. Relational: Developing rich and meaningful relationships with others. Building a supportive network of friends who offer understanding, closeness and empathy. Being part of a community of folks who care for one another.
from "Seeking Your Healthy Balance" by Donald and Nancy Tubesing

Remember also that you have other priorities after yourself and before your parent.
· If you are married, you made a commitment to your spouse that brought you together as a new family, separate from your parents. Statistically, your spouse will survive long after your parents have passed on. Long-term, it makes little sense to jeopardize your marriage and alienate your partner while caring for your aging parent.
. If you have children, your responsibility to them also takes precedence. Your parents are part of the past and guided you to where you are now. Your obligation is to see that your children are guided into the future. Do not ignore your children’s needs while caregiving; guiding the next generation is a way to honor your parents.

Suggestions:
· Read this blog, visit the Parentcare website, the Parentcare 101 Bookstore, use all the resources and suggestions you find to help you balance your life and remind you to nurture yourself.
. When you are overwhelmed, remind yourself that your first priority is you. Give yourself a 15-minute break of quiet, then set your priorities and tackle the problems facing you.

For Reflection and Sharing:
When you read "Your first priority is you.", what is your reaction? Do you think you can take this advice seriously? Have you taken this advice to extremes and ignore your parents' true needs? What would it mean in your life if you gave yourself the same measure of time, consideration and care that you do others? What one thing can you today to put a little more balance in your life?

Your First Priority: Resources

Many of the ideas in today's post Your First Priority Is You were taken from the following resources. Use them to help you find your balance in caregiving and set your priorities. Books that are in print are available through the Parentcare 101 Bookstore.

• Dolan, J. Michael. How to Care for Your Aging Parents…And Still Have a Life of Your Own! Los Angeles: Mullholland Pacific, 1992. (Read especially the Epilogue)
• Golden, Stephanie. Slaying the Mermaid: Women and the Culture of Sacrifice. Harmony, 1999.
• Louden, Jennifer. The Woman’s Comfort Book: A Self-Nurturing Guide for Restoring Balance in Your Life. HarperSanFrancisco, 2005.
• Moffatt, Betty Clare. The Caregiver’s Companion: Words to Comfort and Inspire. iUniverse, 2000.
• Tubesing, Donald A. and Nancy Loving Tubesing. Seeking Your Healthy Balance: A Do-it-yourself Guide to Whole Person Well-being. Pfeifer-Hamilton Publishers, 1991.
• Uustal, Diann B. Caring for Yourself - Caring for Others: The Ultimate Balance. Educational Resources in HealthCare, Incorporated, 1997. (Out-of-print, but worth reading. Check your local library).

To search for articles or more information on the web or in your library, try these search concepts combined with an AND:

Concept 1: Self-Care, Self-Nurturing, Wholeness, Whole Person Well-Being, Wholistic Medicine, Self-Help Techniques, Nurturing Behavior, Life Balance
Concept 2: Caregivers—Psychology (subject heading in library catalog), Caregiver Stress, Compassion, Fatigue

Search examples: Wholeness and Caregiver Stress; Life Balance and Caregivers; Wholistic Medicine and Compassion