“Who Will Care for Mother …”

When a double tragedy befalls a family, siblings and friends make it possible for one of them to take a six year leave-of-absence to provide round-the-clock home healthcare.

Key Points:

• Double tragedy

• Significant in-home care needed for parent

• Determination to avoid professional care

Sister Marie is 85 years old and has been an Immaculate Heart of Mary Catholic nun for 63 years. Currently, she is employed as the associate to a pastor overseeing two small town Catholic churches. At the time of the story, she was an administrator in a large Catholic High School serving 4000 girls. Her mother was not considered elderly; she was 74. She was not considered sick; she worked part-time in a department store and shared a home with her husband. In a moment, her life changed forever.

Dr. Massey’s Comments…

When tragedy hits families, we never know the day or the hour. If you get sick or are struck by a car, are you prepared? Have you talked with your family about contingency plans? Do your children or selected others know your desires? Have you shared a power of attorney status with anyone yet –even if you are only in your 50s or 60s? Have you developed an estate plan, including health directives?

The double tragedy is heart-wrenching, and could throw any family off balance. Here, one parent lies in a coma while the family conducts a funeral for the other. Shock and grief surround the siblings as they discuss their options. They manage their emotions and honor each other well. Yet, families deal with tragedy differently. Some people: a) rally, but fall apart later; b) some fall apart immediately, using misplaced accusations, judgments, and hurt to mask loss; c) some let time lead to the optimal choices for the surviving parent’s care; and d) some stay in shock longer than others and have little to offer. You may be familiar with this range of reaction. Meanwhile, the surviving spouse wakes from a coma, and faces her personal shock and grief. Could you be sensitive to her situation? Imagine the challenge for a woman who went to work in the morning to come home four months later unable to speak, or to move her right side, or to find her husband waiting for her. One cannot calculate her private grief. Can we manage our own loss well enough to care for a surviving parent with respect and tenderness?

Let’s consider decision-making in this family. Shock reactions would probably determine early choices. If siblings are at odds with each other, seeds of conflict would form immediately- even if months passed before problems erupted. It’s important to guard against judgment and blame and wait for emotions to settle down. Choosing a primary caregiver takes time and discernment, often much discussion. How would your own family choose a primary caregiver? If you are not able to take that role, would you be able to talk about it with your family members? Sister Marie does not mention how she became the family’s primary caregiver choice. She does not mention how she was able to assume the duties of a nurse or doctor by reading books, observing physical therapy sessions, and asking questions. She does note the enormous support of neighbors and friends, and the availability of doctors.

Let’s talk about In-home care. This caregiver was on deck for six years. She does not speak of burnout, or the help provided by her brothers along the way. We have to presume that her success was predicated on lots of help. Caregiving work is impossible without outside support. Caregivers easily burn out early. Care for the caregiver is talked about openly these days. Support groups exist in most communities. Online support abounds. Seek help, take breaks, focus on other aspects of life when possible.

The mother’s journey was painful. She improved with daily rehabilitative therapy. Then, suddenly, she had another stroke, never spoke again, and became a bed patient. She got out of bed with the help of a Hoyer lift. She had a feeding tube. She lived two more years with very limited ability. What a spirit of survival must have guided her. What a massive amount of love must have encouraged her along the way. Many caregivers would emit their frustrations, feelings that the loved one readily observes, understands, and then reacts to. How often do you involuntarily make matters worse by venting feelings on those in your care? In my therapy practice, I notice that it happens frequently when folks are weary and their charges are demanding. What I am not privy to is the response, mostly internal, of the one receiving the wearied looks, sighs, sharp tones, and grunts. They are probably ready to die, to give up, but it is not their time. They look at us and know they are a burden. All families would benefit from talking with each other about their feelings. “I bet you want to die, mom?” and “I think you want me to die, daughter/son.” After acknowledging the truth in these statements, consider the freedom that comes from candid conversations. “Yes, sometimes I get very weary. It’s a hard job caring for you. But I love you and I don’t want to lose you. Life is challenging for you, too. Let’s try to enjoy this time more.”

Sister Marie talked with her mother often using a blinking eye signal. Her love and patience guided the ‘conversations.’ What would you do?

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Dr. Mary Ann Massey

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