Speaking with Your Family
Think, Plan, Share, Write it Down
While the words of the ancient Jewish leader Hillel of Babylon, “If not me, who; if not now, when?” are a call to action in the world, they also aptly describe the importance of making your final wishes known. If you anticipate there may be differences in opinion about your healthcare wishes across you and your family members, in which case you may want to:
Start the conversations early, before you and your family are under pressure to make big decisions or worst yet, in crisis mode.
Hold a family meeting to hear your loved ones points of view, discuss choices and develop a united plan. When all decisions are made document the plan.
Speak with family members ahead of time about who you have selected as your health care agent.
Give your primary physician copies of the documents that record your wishes and the list of people you want/do not want involved in your care decisions.
Provide copies of your Advance Directive to key family members and physicians.
We all hope to be in the best possible position to make the right decisions and to be able to share them with our family. The Hospice Giving Foundation in Monterey, California developed an easy-to-use loose leaf binder that contains numerous sections detailing the location of important papers, personal and professional contacts, burial and funeral wishes as well as spaces for notes to the family. It can be downloaded at www.hospicegiving.org and even if it seems like too much information to track down, any part you complete will be a gift to those left behind. The website www.NHPCO.org provides tools to assist you in navigating the situation when there is disagreement within your family.
In some cases what makes advance planning particularly difficult is that the questions are posed when a disease state is advanced and the degree of cognitive clarity to weigh options and make decisions may be lacking. It is a powerful reason to face these decisions early while you are still able to do so. Dr. Volandes recommends offering reassurance to your loved ones who may not want to talk about end of life and your wishes, by indicating that this conversation is important to you; you need to know they will not be confused or without resources and left to make difficult decisions on their own. The process of planning may seem staggering, and it is a demanding one, but it is also rewarding and when completed, many feel a huge burden is lifted from them.
After years of helping patients come to terms with their life and to find peace and well-being in their last days, psychologist Charles Garfield at UCSF founded Shanti as an organization to train others to practice the 7 practical components in dying well. His guidelines developed from his years listening to patients are based on the principles he believes people need at the end of life. These are:
- Experience as little pain as possible. This includes physical, psycho-social and spiritual pain.
- Recognize and resolve interpersonal conflicts. A good death allows others say to say the four things we mentioned earlier and deemed so important through the work of palliative care physician Ira Bryck, “I love you. Thank you. I forgive you. Please forgive me.” These words, spoken without blame and with generosity of spirit, cover an array of situations, from perceived slights to acceptance and profound love.
- Satisfy any remaining wishes that are consistent with the patient’s present condition. Accommodation for attendance at a significant event might be possible and can be worth exploring. However, exercise caution in avoiding attempts to foist inappropriate or unrealistic activities on the patient, since it can result in an “appropriate death stolen from the dying person by other forces, including the agenda of close family members.”
- Review life to find meaning. As we consider our life in retrospect, focus turns to the people who have been loved and who have loved in return. There is also great meaning to be found in one’s accomplishments that have contributed to the greater good. The support of a family celebrating the patient’s contribution and love is essential. Equally important is leaving unsaid what is left undone; spreading guilt and anxiety only serves some small purpose, instead of focusing on the patient’s feelings of peace and contentment as they know their life’s journey is nearly complete.
- Give control to a trusted person. A problem shared is a problem halved. Identifying someone who is committed to the kind of death the patient desires takes a huge burden from their shoulders, allowing their focus to be on their needs, not on the details of care. Asking the patient what they need and want, not what someone else needs and wants, is the key to comfort instead of uneasiness.
- Protection from needless procedures that only serve to dehumanize and demean without benefit. Families need to protect the patient from a health care system that promotes all possible measures to keep patients alive and need to be vigilant about any unintended enabling on their part.
- Decide how social and how alert the patient wants to be. Some patients wish to pass in peace with only one or two other persons present, while others prefer a wider audience. In either case, goodbyes are helpful to family members in dealing with their subsequent grief and sense of loss.
Sibling Cooperation
Roles within the family are foisted upon some of us and chosen by others. Often, the roles that are established early on in life follow us throughout our interactions with our family members, regardless of our later maturity, accomplishments or responsibilities. In some families nightmarish dynamics occur even into later years, pitting eldest against youngest, as if it is a school yard hierarchy instead of the equality of adulthood. Sometimes the perceived slights of childhood can become exacerbated as one sibling feels that they bear the brunt of the heavy lifting and is worthy of a larger say in matters surrounding parental responsibility, health care or legal issues. Issues of choices as well as financial realities and independence take thoughtful consideration, not decision by fiat. A key aspect of any anticipated change is to keep in mind the wishes of your parents. For most of us, a primary goal of our parents is that, we, as children (adult or otherwise), try to reach agreement and not fight. This warning against fighting is wrought with potential pitfalls as often siblings do not necessarily agree on the notion of what mom or dad would want in a given situation. This reality is why every one suggests these conversations, especially ones concerning end of life, happen early when mom and dad are alert and can make their decisions and wishes known rationally and for those wishes to heard and acknowledged by their offspring. Unfortunately magical thinking won't solve the crisis when it unfolds and reality trumps denial. As children of aging parents, it is important for our own egos to engage in a generosity of spirit with each other, to facilitate meeting everyone's needs as best as possible. It takes compassion as well as courage to survive the emotional roller coaster inherent in aging.
Caring for Elder Parents
Every day10,000 baby boomers are turning 65 years old in the United State. For the first time ever over 60% have parents living well into their 80s and 90s. Caring for an aging parent may start simply, involving just a few tasks a week that the aging parent can no longer manage. However, as time passes and the loved one's health declines, the tasks mount and the responsibilities increase. In some cases, adult children live locally and have the skills, time and flexibility to help care for their elder parents; in other cases, the children and parents may be separated by distance or the adult children may have family or work demands that restrict their ability to provide care. For most families, there will come a day when they can no longer provide care for their parents, either because of their physical or mental limitations or because they believe their parents need more socialization than they have in their home environment.
There are some signs to guide you when deciding when this time has arrived including the following:
- Safety. One of the primary reasons to consider moving an aging parent into assisted or skilled nursing is for safety. At home, without the proper skills, supervision or support equipment (such as grab bars, lighting, raised toilet frames…), they may simply be unsafe. Some specific signs to look out for are:
- Are they able to handle daily living activities—eating, dressing, shopping, cooking, laundry…
- Are they able to bathe themselves? How is their personal hygiene?
- Are they taking the right medications at the right time?
- Do they have difficulty moving around, climbing stairs and getting in and out of chairs/ sofas?
- Are they falling / do they have bruising? Are they losing their balance or are they unsteady?
- Are they able to operate the appliances safely—turn off the oven and stovetop?
- Are they confused or more forgetful? Are they forgetting important appointments?
- Are they locking themselves away in the house and becoming antisocial?
- Are they able to keep up with their paperwork and mail?
- Are they discarding old food?
- Is their environment clean? If they have pets, are they properly cared for?
- Would they know what to do in an emergency?
- Emotional well-being. If your parent is anxious, lonely, or depressed it may be helpful for them to be in assisted living for social interaction with their peers, and in turn, higher quality of life.
- A swift and steep decline due to an injury or surgery requiring the patient to have rehabilitation and assistance with mobility and everyday tasks.
- The onset of Alzheimer’s – although some Alzheimer’s patients can do well at home with assistance, others are better served at assisted living centers or Alzheimer’s facilities. Here qualified, experienced staff are well trained to help with everyday living tasks such as dressing, bathing, eating and also know best how to handle aggression, anger or disease-specific issues such as confusion and wandering.
Caregiver burnout is also a legitimate reason to consider assisted living care. There are times when devoted families can only do so much before the emotional, mental and physical demands of elder care become overwhelming. Caregiving often means you are on call 24/7. If your own health or your work or social life are suffering to the point you have no time left for yourself, it may be time to seek professional care for your parent. If your parent is aging well at home perhaps they can remain there and you can hire nursing staff to come into the home and give you respite.
Virtually all adults say that the decision to place a loved one in assisted living or skilled nursing care is one of the most difficult decisions they will ever make. However, it can often be the best decision for you and your elder.
Quality assisted living facilities offer a compassionate, safe and secure environment; opportunities for nutrition and physical activity; and a wide array of programs that can positively affect the social, emotional, intellectual and spiritual well being of their residents. Socializing with peers has been shown to keep many people physically and emotionally healthier than they would be if they remained at home.
When reviewing living options with your elder parent, here are the benefits of assisted living to keep in mind:
- A safe living environment designed for accessibility and mobility
- Nutritious meals
- Physical activities and equipment suited to your needs. In most cases, physical therapy is available “on campus”
- Interaction with your peers through fun social and cultural activities.
- Intellectual activity through classes, workshops, book clubs
- Convenience. No more housekeeping or homeowner responsibilities that can consume a great deal of time and be stressful. Plus the conveniences of on site gyms, swimming pools, physical therapy, beauty salons, libraries… as well as scheduled transportation
- Help with daily living activities -- so they can devote their time and energy to the people and things they enjoy most
Additional resources
National Hospice and Palliative Care Organization –Talking with Others About End of Life
American Cancer Society – Talking About End of Life
Helpguide.org – Talking About Death and End of Life Decisions
AARP Blog - Siblings Planning Care for Parents
Emergency Care for You – Communicating with Your Family and Doctor About Your Wishes