Arthur Kleinman, MD, a renowned psychiatrist, was a caregiver for his wife for 10 years before he was forced to make the agonizing decision to put her in a nursing home.
If caregiving at home for a spouse or family member is no longer working, it can be difficult—if not excruciating—to decide to move your loved one to a long-term care facility. But what if you promised your loved one you would never put him or her in a nursing home? Even though it seems as if there is no other choice because your loved one is afflicted by a debilitating disease or frailty, should you go ahead? If you do, what’s the best way?
For help in grappling with these difficult questions, Bottom Line Health interviewed Dr. Kleinman to talk about his experience.
Bottom Line Health: How did you become your wife’s caregiver?
Dr. Kleinman: I was married for 46 years. Ten years before my wife Joan died at the age of 71, she was diagnosed with early-onset Alzheimer’s disease. Joan and I were very close. Family was the center of our lives, and we raised two children together. We lived and worked abroad together. She was a Chinese literature scholar, and we were colleagues at Harvard.
During the first 36 years, I had many medical issues, and Joan took care of me, along with most of the household duties. When she was diagnosed with Alzheimer’s disease, I promised her I would take care of her no matter what happened—and that she would always be cared for at home.
For 10 years, with the help of a home health aide, my adult children, my mother, and my community, I did care for Joan at home. She had a rare type of Alzheimer’s disease that affected her occipital lobes, causing blindness before cognitive impairment, and unpredictable behavior set in. Together, in love, we endured the unendurable.
BLH: What prompted you to make the hard decision to put her in a nursing home?
Dr. Kleinman: Joan had become delirious most of the time—agitated, paranoid, and aggressive—and it was very difficult for me and the home health aide to care for her. She also was developing paralysis, and I had trouble performing tasks such as lifting her out of the bath.
The deciding event was an intense episode of delirium. It occurred after I had driven Joan more than three hours to our summer home in Maine to celebrate the Fourth of July—and I had to turn around and drive back to Massachusetts while holding Joan’s hands in her lap so she wouldn’t open the passenger side car door.
Once back at home, Joan went wild, thrashing around violently, smashing framed photos and several antique plates. Then she lay on the floor, kicking and screaming. Finally, she fell asleep. I realized I couldn’t go on. I couldn’t care for her anymore, and it was time for her to be in a nursing home. This opinion was seconded by geriatric psychiatrists I consulted.
That was one of the hardest decisions of my life. I felt like a total failure. I had promised to take care of her at home until she died, and I could not honor my promise. I knew the rational reasons for my decision, but emotionally I felt I was abandoning her—that I had not done for her what she had done for me.
BLH: What should people do if they feel guilty about their decision to place a loved one in a nursing home?
Dr. Kleinman: I don’t think there can ever be so-called closure around such a decision. Life is very complicated, and it is likely you will carry a sense of failure, of being wounded and broken. As the lyrics of the Leonard Cohen song “Anthem” say: “There is a crack in everything. That’s how the light gets in.” Failure is part of living. Love and commitment and the passion to act, even in the face of inevitable failure, carry you through.
BLH: What is the best way to decide if a person should be in a long-term care facility rather than at home?
Dr. Kleinman: There is no one-size-fits-all answer to that question. Every such decision should be made in the context of an individual’s life.
For example, after my wife died, I invited my 98-year-old mother—who lived alone in an apartment—to come live with me. I thought she would be happier in a family setting. But after two months, she said, “Arthur, I don’t want to live here anymore. You go to work every day, and I’m lonely. I’ll do better in assisted living.” I replied, “Mom, do you want to live with strangers?” She said, “I’m very sociable and like to make friends.” She was crying as we talked because she felt isolated and depressed.
My brother and I found an assisted-living facility not far from my mother’s longtime home and, after a few months of settling into her new surroundings, my mother came alive. She made new friends and her spirits improved. She was stronger and her emotions were more stable than they had been in years. She lived to 102 with her wits about her.
As my mother’s story demonstrates, there is no simple answer to this question. Some people do better at home, or aging in place. Others do better in an assisted-living facility or at a nursing home. Take the happiness and well-being of your loved one fully into account and decide. If family members disagree or the patient resists, consulting a trained social worker, geriatrician, and/or geriatric psychiatrist can help work through the issues in a way that is satisfactory for all involved.
BLH: How do you choose the best nursing home for your loved one?
Dr. Kleinman: Visit as many nursing homes as possible so you can see the differences in services and each home’s qualities.
Don’t just talk to the director: Walk around. Look for the human quality of the place. Is there liveliness in the day room? Are there flowers? Are people being treated in a way that makes them feel at home and happy? Talk to families and to residents. Ask how they’re doing and what they think of living there. If communal dining is an option, that can be a good way for residents to create social bonds.
Also observe the staff. Do they go through their tasks mechanically or is there an emphasis on friendship and caring? Look beyond the doctors and nurses to the aides, who provide most of the daily care. You want aides who radiate warmth, attentiveness, and humanness—who affirm your loved one as deserving of respect and care.
BLH: How do you make sure your loved one has the best possible experience in the nursing home?
Dr. Kleinman: The key to well-being for anyone in a nursing home is avoiding isolation, loneliness, and depression—which means having visitors. When my mother was in assisted living, there were a lot of visitors from nearby schools, which had a wonderful impact on her and the other residents. Our grandchildren also loved to go there to be with their grandmother. The key is to visit often and to help arrange for others to visit, too. Having people other than the primary caregiver visit not only reduces the burden on that person, but also enriches the experience of the individual receiving care.