And so the journey begins …

When one widow began to experience short-term memory loss that interfered with her ability to function alone, her greatest gift to her three daughters was to seek their support in what was to become, as Nancy Reagan wrote, “a long goodbye.” She had a choice: to “go it alone” as long as she could and isolate herself from those who loved her most; or to draw them into her world while she was still able, allowing all to share in a tapestry of memories, tears, laughter, and love that would forever enrich their lives.

After a diagnosis of depression transitioned into one of Alzheimer’s, the widow first became very practical with her daughters. Plans were necessary, but decisions were almost impossible to make alone. Each family member played a unique role, according to her abilities and her desires. Was the road easy? No. Were there times of deep soul-searching and honest conversations? Yes. Was there conflict? Some … but less than expected. Husbands also played a strong supporting role but remained in the background—more as support for their wives and sisters-in-law. Did they make mistakes? Of course! However, they were determined to muddle through, to lean on their God, to communicate honestly, and to love one another unconditionally.

The journey began with wills, powers of attorney, difficult, and endless conversations on end-of-life issues such as tube feeding, do not resuscitate orders (DNR), funeral wishes, etc. Resolving all these issues was a process that took over a year’s time.

As their mother’s world began to change and her environment needed to change, they all had to address the matter of “things”! She would select items of equal value and set them aside until her family was gathered. They would draw cards with numbers that corresponded to numbers on the items. Matched numbers meant the item was theirs. After a draw, some real horse-trading would go on—laughter, memories, and some tears … but a deep sense of family heritage. It gave the mother joy to be able to share and actively direct this giving, which would continue at her direction over the years as her world became smaller and smaller and her needs changed.

Now, as her journey here is ending, she has planned so that her family can care for her without the worry of financial burdens,
funeral arrangements, disbursement of property, etc. They are able, within the plan she set forth, to be flexible in meeting her
spiritual, emotional, and physical needs.

Crisis, or sometimes even planning for crisis, can bring to the surface past losses and complications with parent/sibling or sibling/sibling relationships. It might be wise to use a facilitator outside the family to lead or direct this process. This could be a healthcare professional skilled in this area, a hospital social worker or discharge planner, a psychologist or a psychiatrist, or if necessary an attorney who specializes in mediation to help families in dealing with aging issues. Some financial planners also offer this service. Several community agencies listed in this publication can also provide ready resources or links to community resources that assist families in this process.

Family Meeting

When planning a family conference, be sure to include those who live far away and those who are extended family members. Even if they can’t attend, being invited means that they are part of the process. The most important attendee is the older adult. If they sense that there are decisions being made or considered without his/her input, feelings of anger, isolation, anxiety, helplessness, and depression may emerge. Unless severely incapacitated, the older adult has the legal and moral right to make his/her own decisions and to participate in plans affecting his/her life. A person’s desires and decisions should only be questioned when there is brain deterioration or the older adult's decisions are endangering his/her life or the lives of others. If they are unable to attend, it is imperative that you keep him/her informed and involved in the decisions made.

What is shared in a family conference? The spouse, adult children and other important relatives and friends collectively discuss what the older adult can reasonably expect and accept from them. Early sessions can be stormy, and old conflicts and slights can surface. Invitations to the older adult should be carefully phrased. (e.g., “Mom, there is some planning that we can do now that will give us more choices and options later.” Or “We want to make sure that your concerns are addressed and considered.”)

Preparing

  • Before the meeting an effort should be made to gather as much information about the older adult's condition and situation as possible.
  • Most older adults want to maintain their independence as long as possible.
  • Be balanced and sensitive in your approach. It is vital to not move too fast, but at the same time, to be thorough.
  • The sooner a family conference takes place, the better it is for them and the family. It presents an opportunity to avoid misunderstandings, to recognize and assign responsibilities, and to consider options that reflect the parent’s preferences and feelings.
  • While one meeting is good, periodic meetings are best.

Purpose/Goals

  • To learn the older adult's preferences, wishes and feelings about housing, health, finances, insurance, legal documents, crisis care, long-term care and end-of-life issues.
  • To determine, as permitted by the older adult, the current state of his/her legal and financial affairs.
  • To identify available resources to enrich them spiritually, physically, socially, intellectually, and emotionally.
  • To help them make decisions about his/her affairs, future, and long-term care.
  • To help the older adult maintain the level of independence he/she wishes
    and is feasible, while considering his/her concerns and fears as well as those of other family members.

Suggested Agenda

  • Designate someone to take notes.

Complete and organize the following:

  • Personal Information                                                                                                                                                 This comprises what many services refer to as “the face sheet"; it is the information almost every entity will ask for before providing information or service. Examples are Social Security, Medicare and Insurance Policy numbers, names and phone numbers of doctors, and all prescription and non-prescription medications. Having this information handy when calls are made will help all parties avoid uneccessary delays.
  • Legal Information (See Financial and Legal Chapter)                                                                                                   The older adult may not be ready to divulge this information. Encourage him/her to make an appointment with an attorney to complete the documents. It is important that all documents have been collected and processed and that you know their location.
  • Medical Information (See Negotiating the Healthcare System Chapter)
    The older adult should bring a container with all medications, any printouts from physicians, and his/her address book or phone book containing phone numbers and addresses of medical professionals.
  • Financial Information (See Financial and Legal Chapter)
    Again, the older adult most likely will not not be ready to divulge this information without good reason. Encourage the senior to make an appointment with his/her CPA or financial planner to complete the documents. The important thing is that as much information as possible has been collected and you know the location of all documents.
  • Insurance Information (See Financial and Legal Chapter)
    Make a copy of insurance cards. Look for overlapping or unnecessary policies. Know location of policies.

Thinking Ahead

After you’ve established your plan and sorted out who will do what, you will need to remember to be flexible about adjusting it. What works today may not work well next year or even next month. Do your best to anticipate the older adult's needs and address concerns proactively. When it comes to looking after your senior, you will always have to be vigilant. There’s no doubt that the balancing act is exhausting. But, ultimately, it’s one that they will appreciate and you will find rewarding.