Fred is a fictional 64-year-old man with gbm who accepted hospice care one week ago. The following is a story of how Fred and his
family are dealing with this difficult time:
Fred has been, for several days now, spending all of his time in the living room, in the bed that hospice had provided. Though he is no longer able to get out
of bed unassisted, he is still able to enjoy watching golf and game shows on TV and loves it when family or friends drop by.
Two of Fred's brothers live a town or two away and take turns coming by every evening after work. They visit briefly---never overstay their welcome---and
always offer to run an errand for Fred's wife, Mary Ann, or to sit with Fred so that Mary Ann can get out of the house for a while.
Fred's sister, Joan, who lives several states away, has flown in to see Fred about once a month. Her visits always help to bolster Fred's mood and offer a nice
respite for Mary Ann. Although Joan knows that she can't personally understand all that Mary Ann is going through, she is a marvelous listener and always seems
to know just what to say. She consistently reinforces that Mary Ann is doing everything as well as anyone could under the circumstances and that all of Fred's
family love her as dearly as they love Fred himself.
Fred and Mary Ann's grown children, Maria and Greg, live within 30 minutes of the house and have worked out a reliable schedule of support for their parents,
around the daily needs of their own growing families. For many months now, Greg has been handling all household repairs and lawn maintenance duties at his
parents' home and seems pleased to contribute. Maria spends a great deal of late-night time online, trying to understand more about the final stage of her father's
illness and about how to make him most comfortable. She stops by almost every day, to do errands or light housekeeping or just to sit over a cup of coffee with
her mother while her father sleeps. Mary Ann is receptive to all that Maria has learned, and Maria has a reassuring way of sharing the information so that the
whole family can be prepared for what is to come.
Mary Ann worries about how Maria and Greg are juggling their own families' needs while worrying about their father, but she is relieved to be able to lean on
them in so many ways. Each of "the kids" has been able to share their emotions with their mother, and Mary Ann treasures the way they have grown close to
her at the time she needs it most. In her heart, she knows that "afterward," both Maria and Greg will continue to be there for her.
Fred and Mary Ann are blessed with wonderful neighbors who care deeply and are accessible for any request at all but, at the same time, are unobtrusive.
Members of their church are equally supportive. A long-time friend of the family has, with Mary Ann's OK, volunteered to email daily updates to others in Fred's
circle, in order to limit calls to the house.
As for Fred and Mary Ann themselves, sitting at the very soul of the situation, their own bonds have grown. They have been taking every opportunity to share
their many emotions over what is happening, to express their love, to laugh where they can, to make their memories, and to pray together for the easiest path
from here. Even when neither speaks, they enjoy just being near each other. Their looks and touches are tender and poignant, and as much as it hurts, Mary Ann
is trying to appreciate their lasting gift.
Now for a little reality....
While I've known of some families like Fred's, they're the exception rather than the rule. To the other extreme are
some real family "horror stories." And somewhere in the middle lies everyone else.
A woman whose husband was in his final month with gbm shared with me that she couldn't help but feel cheated
because the man's end-stage time wasn't living up to the images she assumed that everyone else was experiencing---
maybe images like those of the fictional Fred and Mary Ann and their family.
I hope that your reality is like the story above, but if it isn't, I hope it will bring you some comfort to know that very
few families are like Norman Rockwell's painting of the happy family gathered at Thanksgiving---not before illness
strikes, not during, not afterward.
Your reality may be more likely to include any of the following issues and more. Each of these has occurred in at least
one actual family that has shared their experiences with me---no more fiction:
Power struggles within the caregiving family
Use of money by one family member to manipulate the others in their decision making
Some members barring others from having access to the patient
Any argument that becomes so heated that the patient is aware of it and feels like a burden to the others
Battles among family members over whether to end or continue treatment
Tug-of-war over power of attorney or who should play the role of primary caregiver
Debates over traditional versus alternative therapies
Emotional blackmail ("I want it handled this way, and if not, I may not come to see the patient anymore.")
Fights over memorial arrangements, including whether to bury or cremate, where a service would take place, who will participate, etc.
Fights over interpretation of the patient's actual wishes
Competition among grown siblings wrestling with old issues of "Which of us is the favorite?"
Feelings of alienation by original family members if "steps" are making the decisions
"Information held hostage"---those in the know withholding updates from others
Blame over how things have proceeded ("If you had only listened to me back when I said....")
Unequal contributions of time and effort that may lead to resentment in those doing "the most"
Dialogue that continues old animosities ("Her parents never liked me, and now we can't even be in the same room together.")
Neglect of the patient by a caregiver who hasn't prioritized the patient's needs above his or her own ("I know he fell last night. I couldn't hear him
because I had taken my sleeping pill. I have to take my sleeping pill. I need my sleep." or "I changed her last night. She doesn't need to be changed
again this morning. Those Depends aren't cheap, you know, and with my bad back, it's hard enough reaching across the bed to do it.")
Caregiver denial that is leading to a lack of proper care
Caregiver burnout ("Why don't you just die? They said you were going to die last week. Why are you still holding on?")
Substance or alcohol abuse as a means of coping
Verbal abuse of the patient---usually withheld until others are not around but may be apparent in the patient's behaviors toward the individual
Negligence in administering medications off-schedule
Spiritual abuse toward the patient ("You aren't going to heaven unless you....")
The Patient's Own Issues
Withdrawing emotionally from the family ("When I walk into the room now, he literally turns his back toward me and won't look at me.")
Physical abuse of the primary caregiver, or threats of abuse (especially with frontal or temporal tumors)
Threats of suicide by the patient or such deep depression that the family feels helpless
The patient's insistence on living alone or managing his own care, which is becoming problematic
The patient's anger is so severe that caregiving isn't easy, and people "on the fringe" are no longer comfortable coming over
The patient's stubbornness over being admitted to a facility or remaining at home
One of the things that families relate to me most often is their anger and disappointment in a member who has
chosen not to participate in caregiving. In every instance I can think of, they admit that the following statement
Tragedy doesn't make a martyr of anyone. It does, however, cast a magnifying glass over those involved. Those who
were giving and attentive before, now appear to become even more so; those whose lives were chaotic and disconnected
to the others before, may seem now like they're spinning off like a separate satellite. And yet this tends to be how it's
always been, when viewed objectively (which is, admittedly, difficult when in the thick of things)..
If, in your family, there is someone who has surprised you by not "stepping up to the plate," it may be that this
isn't the affront it seems to be. Tragedy changes the nature of very few people, but it does make certain negative
behaviors appear far worse---and certain positive behaviors appear far better---creating an illusion of rogues and
saints, where instead there is just: family.
I used to think:
Everyone can. Some choose not to.
Now, having learned so much through others and through the perspective of time, I know:
Some can. Some just can't. It very rarely means an absence of love.