In Making Rounds with Oscar, geriatrician Dr. David Dosa focuses on the nuances of Alzheimer’s disease and dementia. Of Dr. Dosa's patient stories, I found most intriguing the story of a woman with dementia named Ruth Rubenstein and her doting husband, Frank Rubenstein. I have focused on the details of their relationship as chronicled by Dr. Dosa, as it clearly illustrates how dementia affects relationships from diagnosis through decline.
“I had to look into the eyes of the eighty-year-old woman I had just examined and ruin her life.” Dr. Dosa is examining Mrs. Rubenstein to determine if she has dementia. Couples like Ruth Rubenstein and her husband Frank have a symbiotic relationship whereby one can deflect the questions to the other. So when asked about her favorite restaurant, Ruth does just this – she has her husband answer the question. Dr. Dosa is not deterred by this attempt at covering up her memory loss, and moves on to asking her next to draw a clock from memory. Ruth does this after some coaxing. However, when asked to place the hands at 2:45, she puts the little hand at the two and the minute hand half way between the 4 and the 5.
Next Dr. Dosa asks her how many four legged animals she can list in one minute. Ruth lists only 6 and cat was listed twice. When asked to spell the word ‘world,’ Ruth is able to do so quickly and accurately but she cannot spell it backwards, and gets only two of the letters in place when she tries.
Privately, Dr. Dosa asks her husband more specific questions including if she has done anything dangerous in her everyday living, like leaving the bath running, leaving the stove on, having car accidents or fender benders, or if any other changes in her behavior have occurred. This particular section reminded me of a good friend whose mother had consistently been hitting the curbs and sometimes parked cars at her assisted living facility. My friend had the hardest time convincing her mother to give up driving. Independence is hard to part with, but the dangerous facts spoke for themselves. My friend finally scheduled a meeting with her mother’s doctor, so together she and the doctor could address her health issues in relation to her ability to drive.
Aging and Memory
During Dr. Dosa’s examination of Ruth she tries to insists her memory loss is simply because she is old, but memory does not decline due to simple aging. Here, Dr. Dosa touches on the fact that “age really has nothing to do with memory, and problems with memory are never normal aging.” In fact, many problems like arthritis, high blood pressure, high cholesterol, adult-onset diabetes, and some cancers are contributed with aging, simply because they usually occur in people’s senior or elder years. Interestingly, these are not strict aging related health issues, but rather the effects of years of build-up in the body, allowing the problems to surface in later life. For instance, if one has smoked for 50 years of their life, it makes sense that the damage would in time catch up producing perhaps emphysema or lung cancer in one’s 60’s or 70’s. In fact, my grandmother who began smoking at age 16 did not get emphysema until she was in her early to mid 70’s.
Dr. Dosa chronicles the decline of Ruth’s mental health via dementia. First Ruth’s memory impairs her social graces and embarrassed by her memory loss, she withdraws from her friends. The withdrawal causes a depression, which is then treated by medication. Next Ruth becomes unable to complete household chores, meals are frequently burnt, simple recipes become too difficult to manage, and her husband Frank must resort to hiring a maid and ordering meals out.
What is interesting is that despite this decline, the Rubenstein’s relationship remains loving and dementia even spices up their love life. Dr. Dosa said, “One day…Frank pulled me aside…like a young teen sheepishly buying condoms for the first time, he asked me if I had any samples for something that might help his impotence." Frank was having trouble meeting his wife’s sexual demands, which Dr. Dosa explains is not unusual for married couples when one has dementia.
Caregiving Becomes Too Difficult
However, as Ruth’s mental decline gets worse, it becomes apparent to Dr. Dosa that Frank can no longer care for her. Frank appears unwashed, disheveled and exhausted. Although Frank takes offense at Dr. Dosa’s suggestion that he put his wife in a skilled nursing facility, he takes the suggestion to heart and hires an in-home caregiver.
Not long after, Ruth contracts pneumonia and is hospitalized. Her memory impairment makes the hospital stay difficult. She wanders about in the middle of the night, gets “tangled in her IV tubing” and falls “awkwardly to the floor.” The fall leaves her with a broken hip requiring surgery. The surgery leaves Ruth with more health issues. She “suffered a pulmonary embolus and became less stable.” When her breathing becomes difficult, they intubate her. Her health does eventually improve but it leaves her too weak to walk and her husband Frank must consent to place her in the skilled nursing facility.
In the skilled nursing facility, Ruth stops eating and loses 10 pounds. Her husband insists that she is seen by a gastroenterologist, and refuses to consider hospice. She again contracts pneumonia and returns to the hospital. During this stay she is given strong medications to calm her. Eventually a one-to-one aide is then assigned to keep her from getting up from the bed and falling during the night.
She returns from the hospital, but is too confused to eat and refuses to do so. Intravenous fluids are required to sustain her. She experiences a confused delirium and agitation from hospitalization and refuses to eat. Her husband Frank insists that she must eat, and requests a feeding tube. However, Dr. Dosa kindly reminds him “When your wife was still able to speak her mind she told me she didn’t want a feeding tube to help her with her nutrition. Shouldn’t we honor her wishes?” Frank agrees with Dr. Dosa to honor his wife’s wishes, but begins to cry saying, “Doctor, I’m not ready for her to go.”.
Misconceptions About Feeding Tubes
Here, Dr. Dosa explains the misconceptions with feeding tubes and how they are the point of contention with most families. Most people believe that the feeding tubes prolong life, but Dr. Dosa points out that there is “no place for feeding tubes in terminal dementia. Objectively they have never been shown to increase a person’s length of life or reduce the number of episodes of pneumonia. Feeding tubes are not without their side effects.” Although people believe that not feeding a patient is “cruel and unusual punishment”, Dr. Dosa points out that “loss of weight at the end of life is a natural by product of the body shutting down as it prepares itself for death. People at this stage do not perceive hunger or thirst the way someone who is healthy” does.
Health, Love & Appetite Appear to Return
Some days later, Ruth’s delirium improves and she starts eating again. She and Frank are seen walking down the hallway holding hands. When their anniversary date comes up, Frank asks for privacy so he can be alone with Ruth. Dr. Dosa notes that “requests for privacy between patients and spouses are not uncommon…they’re a married couple. Just because she lives here doesn’t mean that they don’t have needs.” Interestingly, what Dr. Dosa finds out from the head nurse is that another male patient has been spending a great deal of time in Ruth’s room and that Ruth likes his attention.
Within a few minutes of husband Frank’s arrival, Ruth screams and rushes out of her room. “The look on her face was one of pure terror and she ran past us without stopping.” Her husband Frank calls Dr. Dosa into the room and explains their relationship and what just occurred.
Frank and Ruth had met at a concentration camp in 1943. They spent nine months together until they were sent away to different camps. Before the separation they agreed that if they survived, they would look for each other to meet at a church courtyard in Frank’s hometown. That date they met up was 63 years ago that day; this was the anniversary Frank had come to celebrate, but instead of a celebration he was met with a shock. “’For the first time since that day, Ruth does not know who I am.’” When he bent to kiss her forehead, he said “’in her eyes all I could see was terror…I was a stranger to her. She just started screaming…I put my hand up to comfort her and she slapped me in the face. Then she got up and ran out of the room.”
Frank then said, “Doctor, in my mind my wife died today…please just make whatever is left of her [life] comfortable and don’t let her suffer anymore.”
Frank never returned to the nursing facility after this day, and within a few weeks, he died of a heart attack. Ruth outlived him by just a couple of months, and without any children, “her lawyer was the closest thing she had to next of kin.”
Although Dr. Dosa’s chronicle of the Rubenstein’s relationship is not met with a happy ending, it is an honest portrayal of how dementia takes its toll on patients and their families.
Dosa, D. (2010) Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat. New York: Hyperion