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Dignity, Frustration, and a Caregiver’s Dilemma

By Donna B. Fedus

The balance is slowly beginning to shift in a couple, with the husband at the very early stages of cognitive impairment and the wife taking on increasing responsibility for many aspects of their lives, including monitoring his health and triggering his memory during medical appointments. Women typically serve as the “Health CEO” of their family, but these days, the wife finds it especially important to attend doctor visits with her husband. He doesn’t always remember to tell her what the doctor said, and doesn’t usually ask all the questions the couple listed ahead of each appointment. So the wife has become the chief list-keeper, memory-sparker, question-asker, and record-keeper.
One major item on the list ahead of tomorrow’s doctor’s appointment is sleep quality, which the couple agreed has been problematic. Ever since hip replacement surgery a month prior, the husband can’t sleep. He’s up pacing at night, and dozing more frequently during the day. It’s disruptive for both of them. He’s been up every night for four weeks. Then, as luck would have it, the night before the doctor’s appointment, he sleeps all night.
The next day, the wife brings up the issue of sleep quality to the doctor, and the husband chimes in, “I sleep fine.” She’s shocked. He’s had restless sleep for 30 of the past 31 nights. She’s thinking fast. Does she push the issue? Would that embarrass him? Would he dispute her version of reality?  Would she look like a liar and feel embarrassed if she presses the issue? He did sleep last night, but does he not remember the other 30 nights? Is he trying to make her look bad? Should she challenge his reality in front of the doctor? This is their precious limited time to ask questions. She has been trying so hard to maintain dignity for both of them with family, friends, and in front of the doctor, but what should she do right now? She says, “both of us worked together on this list of questions.” The husband repeats that he sleeps fine. The wife opts to let it go.  

The moment passes, but the wife’s emotions grow more intense as they leave the appointment and she drives them home. She’s having trouble letting it go, and it seeps into the next day.  She feels embarrassed, angry, and FRUSTRATED! She thinks, screw it, if he doesn’t want to talk about his poor sleep quality, and possibly get a medication or remedy for it, then let him pace at night. Then she feels guilty. She is trying so hard to help and be there for him. But she wants it to stop: the memory loss; the need for her to take on more responsibility. She wants him to manage his own appointments, but knows that won’t happen. And she feels the weight of more power struggles and challenges she will have to manage in the months and years to come. Caregiving is emotionally exhausting. It’s more than the feelings associated with taking on responsibilities previously handled by your partner or parent. It’s the emotional gymnastics, and in this caregiver’s case, the increasing dread about what tomorrow will bring.

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