“Making Tough Caregiving Decisions” – chapter 7 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter.  If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at powerfultoolsforcaregivers.org.

The title of chapter seven is “Making Tough Caregiving Decisions.” This chapter discusses preparation for decisions regarding care, a model for decision-making regarding care, conducting a family meeting, and planning ahead.  Three “tough circumstances” are explored:  when the care receiver covers up needs; when you receive mixed messages; and when the care receiver is memory-impaired.

Here’s Denise’s report on chapter seven.



Notes by Denise

The Caregiver Helpbook
Chapter Seven – Making Tough Caregiving Decisions

Before making a decision, it is important to:

* Understand your motives, attitudes, and feelings.  These influence your ability to be an objective, effective decision maker.  Ask yourself if you are open to discussing concerns or do you just want your caree to do what you want.  How would you describe your attitude about the situation.  Are you being objective?  How do your feelings fit into the decision?  Are your feelings distorting or exaggerating the problem?  Talk to someone you trust to gain perspective if you are unsure about your feelings or believe you are exaggerating the problem.

* Learn from past experiences and those of others.  Consult other family caregivers, friends, or support group members who have made similar decisions to learn from their mistakes. Consider the timing of making a decision involving change.  What would you do differently from a prior decision or an acquaintance’s similar decision?  What helped you make a prior decision that worked well and could be applied to your current decision?  Ask others what they would do differently next time?  What professional help they found useful?  Ask the care receiver what they want to do.

* Understand the care receiver’s needs and feelings.  If you cannot communicate with them directly, get information from their health care provider, family members, and friends.  Even neighbors and local business and delivery people they utilize can provide information about their preferences. Identify areas where help is needed (driving, meal prep., housekeeping, personal care, finances, home maintenance, etc.).  Identify what the care receiver still does independently, or with some difficulty to anticipate what help may be needed soon.  Determine if the care receiver’s needs are temporary or permanent, and if help is needed occasionally or continuously.  You can get a professional evaluation from a care manager, nurse, or social worker.  Their evaluation will give you confidence in any decisions that need making for the best care.

* Involve the care receiver in decisions whenever possible.  “The goal is to help the care receiver meet his needs so he can live the life of his choosing… No adult wants decisions made for him/her, no matter how wise those decisions may be.  Talk with the care receiver about his/her desires and priorities.  When he/she sees his/her ideas or wishes incorporated into the decision, he/she has a vested interest in making the decision work.”  This “does not mean decisions are left totally up to him/her. …You can set limits… Then within those limits the care receiver can make the decision.”  There is a long list of questions to ask when faced with a decision on page 137.

* Investigate potential options.  “Try not to have preconceived ideas about what is ‘best.’  It’s important to identify all potential options and the benefits and limitations of each – from both your perspective and that of the care receiver.  If possible, the care receiver should have at least two options from which to choose.  Having some choice often helps to give a sense of control and reduce resistance.”

* Recognize the care receiver’s right to take risks.  “Mentally competent adults have the right to make choices regardless of age, as long as they are not putting others at risk.  You cannot force change or overrule the decisions of a person who is not mentally incapacitated.  However, that person…is also responsible for accepting the consequences of his/her choices.”  So, talk with them about the potential consequences of the choices you feel may be unwise.  They may be assuming you will provide care should an accident occur, or that an accident wouldn’t affect their living situation.  Facing reality might make them reconsider their choices.  If not, and an accident does happen, the decision was the care receivers, not yours.

A Model for Making Decisions

Strong emotions can arise in making decisions, especially when family members (including the person you are concerned about) have differing views of the situation, the options, priorities, and philosophical differences.

It’s helpful to have a plan to follow.  The figure on page 139 illustrates this 7-step model for approaching a decision.

1. Identify the Problem.   You need to agree on what the problem is before exploring options or trying to reach a decision.  It may help to answer these questions:
* How does the problem present itself?  What has been observed?
* Why is there a problem?
* What makes it a problem?
* Who is affected?
* What is the current situation?  How widespread is the problem?
* What are the consequences if a decision is not reached about the problem?

It is important to move from generalizations to specifics.  Then, the problem doesn’t seem too large or too vague to tackle. Generalization example:  Dad is a poor driver.  Specific example: He was cited for running a red light.  He straddles the center line.  Three neighbors have complained.

2. Gather information.  This provides a stronger base for decision making.  Get objective information about the person’s health and level of functioning from all relevant sources, Including the community and family about their health and financial situation.

3. Generate Options.  Brainstorm.  This is thinking of as many ideas as you can, without criticism or judgement, to address the problem. This increases the likelihood of selecting the best option.   Health care and social service professionals can help identify options.  Be sure to keep this step separate from Evaluating Options so as not to censor ideas as they are presented.

4. Evaluate Options.  “With most decisions there is no one ‘right’ or ‘perfect’ course of action. … Any decision you make is likely to have both positive and negative consequences.”  Evaluate these positive and negative consequences to determine the best outcome for your family.  Ask yourself:
* What are the potential benefits of this option for my family member?  For myself?
* How likely is it that these benefits will occur?
* What are the limitations or disadvantages of each option for the care receiver?  For myself?

Consider both short and long-term consequences.  An option should not unfairly burden anyone, so it is critical everyone is honest about what they can and cannot do.

Agreeing on standards for evaluating the options – criteria such as financial limits and personal preferences – can also help you select the best options(s).  You might find combining two or more options results in the best decision.

It may be helpful to prioritize the options and to develop a back-up plan if your first choice doesn’t work well.

Writing identified options on a chart like the one on page 142 helps organize ideas.  It essentially recommends writing down each option and making a pros & cons list for each one.  It gives a visual model of how you reached your decision.  It also helps all the choices from becoming overwhelming.

5. Create a Plan.  You may feel you are choosing the ‘least worst’ option, but if your choice meets the care receiver’s needs and you tried to preserve the greatest control and freedom for him/her, consider that it is the best decision for now.

Develop a step-by-step plan for implementing the plan.  Put it in writing and indicate who has agreed to do which task to reduce disagreements.  The plan can be useful later when you evaluate the outcome.

6. Act on the Plan.  Establish a trial period of _____ weeks/months, then look at the plan again.

7. Reassess the Plan.  Situations change, so flexibility is the key to quality decision making.  Although reassessing can be hard to do if you want closure, don’t be tempted to skip this step.  Making necessary adjustments is decision making at its best.  Be prepared to go back through the whole process.

Holding a Family Meeting

“A family meeting is one tool for deciding how to share caregiving responsibilities and for making caregiving decisions.  It gives everyone an opportunity to discuss concerns, identify current or potential problems and solutions, and negotiate the sharing of caregiving tasks.  It can also reduce misunderstandings and clarify each person’s expectations.  The following guidelines can help insure the effectiveness of a family meeting.”

Include Everyone.  Siblings, spouses, other relatives, housemates, the person for whom plans are being made, close friends, and neighbors.  Don’t exclude anyone because of distance, means, or an argumentative nature, etc.  This ensures greater support and helps prevent undermining of decisions.

Consider a Two-Step Meeting.  The first meeting is held without the care receiver to freely air concerns, discuss responsibilities, etc.  The second meeting is held with the care receiver, who is then actively involved in looking at options and making decisions.

Plan for Success.  A family meeting is most successful when you do the following:
* Beforehand, ask family members to list their concerns and the tasks they are willing to do.
* Hold the meeting in a neutral setting.
* Create a feeling of trust, support, and confidentiality.
* Keep the meeting focused on the current concern rather than other issues of past conflicts.
* Ensure everyone has an opportunity to express feelings, voice preferences, and offer suggestions without being put down.
* Focus on the positive.  Identify what each person can do, but encourage everyone to be honest about their limitations.
* Prepare a written plan, listing what each person will do and when they will do it.  Keep it flexible.  Stuff happens.

Use a Facilitator.  A family meeting is not easy, especially if members have never discussed feelings or family issues, or if conflicts already exist.  If these are likely to prevent rational discussion, seek professional guidance.  A counselor, health or social service professional, private care manager, or member of the clergy trained in family counseling may be able to facilitate and provide objectivity.

Making Decisions Under Tough Circumstances

“Special circumstances or difficult relationships may hamper decision making.  Sometimes people hide problems, send mixed messages about what they want or will do, or cannot participate in decision making.”

When the Care Receiver Covers Up Needs.  It may be because “they fear they will be forced to move or accept in-home help.  If involving them in the decision and reassuring them of your intentions doesn’t help…try these steps.”
* Talk to others in the family.  Ask what they have observed.
* Ask friends and neighbors if they have concerns.  You may be surprised how much they do for your family member.  Engaging them in the process further strengthens their support system.
* Talk to local business people (grocers, druggists, fast food employees) and those who provide services like mail delivery and garbage pickup.  Let them know you value their watchfulness.  Give them your contact information if see a problem.
* Write down your findings.  With permission, include names and phone numbers of those looking out for your care receiver.
* Seek professional advice.  Ask the care receiver’s healthcare provider for information about professionals who can evaluate the care receiver’s functioning and needs.

When You Receive Mixed Messages.  “Often mixed messages indicate that the care receiver is thinking about the impact of a decision. Try sharing your observation of the mixed messages and talking with him/her about what they represent.  Listen carefully.  This allows him/her to express feelings and may reassure him/her that you are sensitive to his/her position, uncertainty and feelings.”

When the Care Receiver is Memory Impaired.  Consider the preferences of the person over time and incorporate those into your decision making.  Gather the advice of relatives and the care receiver’s physician.  You can then feel confident your decision is based on the best information available.

Plan Ahead If You Can

Consider planning ahead to be a decision making tool.  It’s not always easy, but it helps reduce heartache, increases understanding about a person’s wishes, makes decisions easier in difficult times, and reduces uncertainty and disagreements.

Enlist the participation of the care recipient to maximize their control over their lives while they are well enough to participate in discussions about declining health and long-term care, living arrangements, financial and legal issues, end-of-life decisions, and death and funeral arrangements.

“One approach is to talk with the care recipient about ‘what ifs.’ For example, ‘What if the doctor said I could no longer provide the level of care you need?’”

“Look for natural opportunities to talk.  For example, when the care receiver says, ‘When I die…’ or ‘When I can no longer…’ be receptive to a discussion” around the topic being raised, rather than dismissing it as depressing.  “Other natural times for talking may be when a family member or friend experiences a health crisis, has an accident, or when you are preparing your own” end-of-life documents.

“When making advance plans, it is important to explore options and to have more than one plan.  Circumstances later on may require flexibility.”