Have you ever been to a “TMR” event? TMR simply stands for “Too Many Relatives,” and it refers to a gathering where you feel overwhelmed by thoughts and feelings related to complex family relationships. These relationships are intricate and become increasingly complicated as our lives become busier. Preparing for a family meeting is as important as the meeting itself.

Know what you want to discuss. Before a meeting, ask everyone to answer two questions: What are your primary concerns now?  What are you willing to do? If you don’t begin on the same page, you may not end on the same page.  If my chief concern is that Dad is no longer a safe driver and my sister’s concern is that he isn’t eating well, then we have to prioritize these concerns. Equally important is figuring out how much each person is willing to help in terms of time, money, and emotional support.  If my sister can’t cook Dad’s meals herself but is willing to make arrangements for home-delivered meals, an easy solution may be at hand.  If Dad wants nothing to do with such an arrangement, however, we may have to think about alternative solutions.

Determine whom you want to discuss. In the example above, we are concerned about Dad’s needs, but if Mom is his primary caregiver, perhaps she needs to be the focus of the meeting. She may be damaging her own physical and emotional health by trying to be a “good wife.”  Dad may defend the status quo based on his (or her) own “tunnel vision.”  He may think everything is working fine because for him, it is; he may be unaware of the burden his wife or another caregiver is facing. Moreover, Mom may be making light of the burden, even when she actually feels she’s at her wit’s end. 

Determine whom to include in the discussion. It is best to invite everyone who has a stake in the outcome of the meeting and anyone who can offer a solution to a problem. This may mean including the contentious members of the family, and you may have to control their contentiousness.  Some family members may need to “attend” via a conference call.  Sometimes a grandchild or niece has a surprisingly close relationship to the care receiver and has much to add.  Enlist the ideas of any outside services you may have been tapping into, such as a physical therapist, case manager, nurse, or paid caregiver.  They may or may not be able to attend the meeting, but chances are they will have useful insights. The more people who agree on the decisions, the better your chances are for success.

Choose a facilitator. Someone must be responsible for keeping things on track and helping resolve conflicts. If someone within the family cannot play this vital role, consider asking a social worker, member of the clergy, or professional case manager to fill this role. In most families, there is a natural primary caregiver, but usually it is better for someone else to be the meeting leader or facilitator. Primary caregivers may have a biased viewpoint about how to handle challenges or may be unwilling to face his or her limitations. Likewise, it is better not to have the care receiver serve as the meeting leader since there are too may “hot button” issues for that person to remain objective.  

It is important to consider if a person with dementia should be excluded from a family meeting. While persons with dementia may not always be able to make cogent decisions related to his or her care, don’t be too quick to make this judgment.  They are often aware of what they need and can state their preferences. The fact that they cannot safely drive a car does not mean they are incompetent in all other facets of their lives.

When you are ready to hold a family meeting, institute a few ground rules:

• Focus only on your agreed-upon agenda.
• Each of you will have a chance to express your feelings and preferences, but there will be no “button pushing.”  The watchword is cooperation.
• Brainstorm solutions and voice all possible solutions. Do not judge any of them at first.  Later, choose which ones to try as your plan of action.
• Everyone can play a role in resolving your concerns, but you also need to be honest about your limitations. Don’t volunteer to cook dinner for your loved one every night if that isn’t something you can do realistically. 

Follow the problem-solving rules once you have called the meeting and everyone is present:

• Clearly identify problems and concerns. These should have been identified in your pre-planning, but summarize them at the outset so everyone understands the agenda. 
• Gather information.  For example, if Dad has recently been diagnosed with Parkinson’s disease, it’s important that family members understand as much as possible about the disease, its likely progression, treatments, and challenges.
• Generate options.  This is the brainstorming portion of the meeting when no judgments are made.
• Evaluate options.  Evaluating options may involve more information gathering.  If, for example, getting Dad to eat healthy foods is a concern and Meals-On-Wheels is one option, someone will have to do some research on what is offered locally and at what cost. 
• Create a plan.  Usually there is more than one possibility, but nothing ideal, so it is necessary to compromise. This usually means trying something for an amount of time – usually a month is long enough to make a reasonable evaluation. Writing a step-by-step plan and including each person’s responsibilities is helpful as well.
• Try it out.
• Reassess.  What worked? What didn’t? Can you make adjustments or do you need to start with a new plan?

 Family meetings can be a satisfying tool for resolving conflicts. They take time, however, and patience is needed for positive results to unfold.  Someone once asked Thomas Edison how it felt to fail more than 2,000 times before he invented the light bulb. His answer was that he didn’t fail, but that “it was a 2,000-step process.” No family becomes close-knit without enduring trials and tribulations. If communication seems to have broken down in yours, think of it as a process. With persistence and love, most families can arrive at workable solutions eventually – at least ones that everyone is willing to try for a while.

Good Grief

By Daniel Kuhn, MSW, Mather LifeWays Institute on Aging

More than 30 years ago, Dr. Elisabeth Kubler Ross described the grief process experienced by her terminally ill patients in the groundbreaking book, On Death and Dying. Her insights led to a better understanding of both grief as a normal reaction to any kind of loss and the process involved in coming to terms with loss. Those who care for loved ones with chronic medical conditions such as stroke or dementia face a series of losses. Caregivers need to recognize their own grief reactions and learn ways to deal with loss. Neglecting this important aspect of caregiving may lead to burnout, but paying attention to your grief process can help maintain your well-being.

A family caregiver may gradually lose a loved one as the illness takes its toll. Physical and mental functions may be lost over time, resulting in dependency on others. Role changes are inevitable as you assume increasing responsibility for a variety of tasks formerly handled by your loved one. Feelings of sadness, anger, and confusion about these changes are natural. Many caregivers report signs of physical and emotional distress such as insomnia, fatigue, and depression as part of their grief response.

Grief involves a psychological “workout,” a process that must take place if there is to be a successful adjustment to the losses associated with caring for someone with a chronic illness:

• Denial is a natural way to avoid or lessen the emotional impact of loss. It is a way of holding on to the past and trying to maintain some control over a situation. Thinking or saying, “I can’t believe this is happening” is a form of denial. This may be a healthy defense for a while; however, if prolonged, it can interfere with proper care and planning for the future.
• Anger tends to become more noticeable as denial gives way to the painful reality of loss. Anger may be aimed in many directions – toward God, health care professionals, family members, friends, the disabled person, or oneself. Overcoming anger involves facing up to the demands and challenges at hand.

• Letting go occurs as denial and anger gradually give way to a new set of expectations. The relationship with the person in your care changes slowly in accord with his of her needs and abilities. Past notions are replaced by more realistic ideas of what the person can and cannot do for him or herself. Efforts shift toward a more focused plan to meet the physical and emotional demands of care. Respite options like in-home care, adult day services, and residential care become viable.
• Acceptance happens when the difficult task of letting go is complete. It involves a reconciliation of the past, present, and future. Participation in new activities and relationships beyond the caregiver role become possible. You realize that caring for yourself is in the best interest of both you and your loved one.

Caregivers do not pass through this grief process in one fell swoop. It is not reasonable to have a timetable. The grief process unfolds in fits and starts, and every individual moves along at a different pace. The key is to not get stuck in any of these steps. Constant, unresolved anger, for example, can slowly poison you and your relationships. There are far too many losses over time to reach acceptance once and for all. It may feel like one step forward and two steps back at times, which is why caregivers often describe a sense of riding an emotional rollercoaster – a series of ups and downs. Having a close friend, a professional counselor, or a support group along for this difficult ride may ease the transition to acceptance.

Daily Affirmations for Caregivers

By Bernie Siegel, M.D.

• I love myself.
• I respect my own needs.
• I am able to ask for what I need.
• I am open to receiving.
• I can ask for help and support.
• I am kind and gentle with myself.
• I deserve care.
• I know how to nurture myself.
• I replenish my energy by eating healthy foods.
• I take the time to exercise daily.
• I have all the energy I need.
• I am compassionate with myself and with others.
• I am able to feel and express all of my emotions.
• I forgive myself and others.
• I am able to renew and refresh myself.
• I take time for fun.
• I love and trust in the process of life.
• I am whole and alive.
• I am at peace with myself.
• I trust that I am doing the best that I can.
• I am enough.
• I am loved.

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