April 27, 2018

'Carol's not Carol anymore': Inside one couple's devastating, decade-long battle against Alzheimer's

Daily Briefing

    CBS Chief Medical Correspondent Jon LaPook for the last decade has followed a couple married 53 years affected by Alzheimer's disease, and in this week's edition of "60 Minutes," he reports on the couple's journey and the importance of discussing caregiving decisions before it's too late.

    Download URMC's conversation prompts to start improving end-of-life care for patients

    More than five million U.S. families are affected by dementia, of which many suffer from Alzheimer's disease, according to "60 Minutes."

    Meet Carol and Mike Daly

    LaPook started interviewing Carol and Mike Daly in 2008. Carol was 65 at the time, and her memory "had been spotty for several years," according to "60 Minutes."

    In the early years, Mike said he would joke about Carol's poor memory with his kids, saying, "I think she has Alzheimer's, the way she forgets everything." A doctor later confirmed in 2003 that Carol did in fact have Alzheimer's disease.

    Carol in the 2008 interview said the diagnosis "devastated" her, because she'd seen "what [her husband's mother] went through" after she was diagnosed with Alzheimer's. Carol said Mike's mother would walk through the streets in the middle of the night, and she and Mike would have to bring her back home.

    For Carol, the deterioration of her memory resulted in many losses, including her job at the bank, her ability to concentrate, and her capacity to complete tasks at home, such as cooking. Carol by 2008 had also given up reading and movies because the disease made it difficult to concentrate.

    Though Alzheimer's disease had started to take a toll on Carol's life, she remained active, conversational, and could remember her favorite film actor, Clark Gable, LaPook reports. In 2008, she said the disease had drawn her and Mike closer together, but that she and Mike feared what the future might hold. Carol said, "My fear is I guess maybe to getting worse. Worse, you know? And it probably would."

    Carol's condition worsens

    When LaPook came for a follow-up in 2011, Carol's condition had worsened. When asked her age, Carol guessed "80," but she was actually 67. And when LaPook asked Carol about her favorite actor Clark Gable, she sighed and laughed, saying she did not know who that actor is.

    By 2011, Carol could no longer dress herself or apply her own makeup—so Mike did it for her. In the time since their last interview, Mike had gained nearly 20 pounds and he had started to take medication to reduce his anxiety and help him sleep. But Mike said it was now his turn to pay Carol back for everything she had done for him over the years; cook, clean, and "put up with me." He said, "I could sit here and … feel sorry for myself. But what is that gonna do for me?"

    By 2014, Carol couldn't remember her last name or husband's name. Alzheimer's disease also had started to affect more than her memory—it began affecting her physical abilities, LaPook reports. Carol could no longer control her feet or hands. Two years later, in 2016, Mike said Carol had "reached a point where she was not able to do anything for herself at all. She couldn't feed herself. Couldn't go to the bathroom by herself."

    Mike hired a home care aide to help him take care of Carol during the day. That cost about $40,000 annually—which meant the disease had begun to affect the family financially.

    According to the Alzheimer's Association, a majority of caregivers have said they struggle most with the emotional stress of their responsibilities. When LaPook asked Mike, "What would you say the toll has been of this long journey on you?" He replied, "I'm dying. I really think I am. The stress—they thought I had a heart attack." Mike continued, "They wanna put me in the hospital. I can't go to the hospital. Alright? What do I do with Carol? Then she has anxiety attacks. Part of the Alzheimer's."

    LaPook told Mike, "Anxiety attacks may be part of what's happening to you, too, it sounds like, if you had chest pain but it wasn't a heart attack. Is that was it was? An anxiety attack?"

    Carol spends most of her time in silence

    By 2017, Carol had started to spend most her days sitting in silence, while she could still react to some of her favorite music, she could no longer understand questions, LaPook reports. Mike said, "We can't communicate, it's lonely."

    During the 2017 interview, Dan Cohen, a social worker, said Carol could connect with music because "music we love is really tied to our emotional system, and our emotional system is still very much intact," despite an Alzheimer's diagnosis.

    When Mike noticed Carol's reaction to the music, he cried "happy tears," saying that "Knowing that she hasn't lost it all. It was like, wow. Wow."

    The move to long-term care

    A year later, Carol, now 77, cannot react to music, but LaPook said her pulse is strong and her heart appears strong as well. Before the interview in 2018, Mike had shown LaPook how difficult it is to get Carol ready. LaPook asked Mike, "What didn't you realize would happen?" Mike in response said, "That she becomes a vegetable. That's basically what I feel like she is now."

    According to "60 Minutes," Mike is now overweight and has high blood pressure. Occasionally, he has dark thoughts.  Mike said a few months earlier he'd contemplated suicide, which "60 Minutes," reports is not uncommon for caregivers of a family member with dementia. Recently, Mike hired more aides to take care of Carol 24 hours a day. He said it is taking away from his savings, but it allows him to make new friends and get out of the house, which helps with his depression.

    Mike said, "I leave this at home, and when I go out it's a new Mike out there now."

    When he's at home though, he worries. While Mike once said he would not move Carol to a nursing home, now he's considering it as the best way to keep her safe and cared for.

    Ten days later, Mike placed Carol in a nursing home. Mike said, "I love Carol who was Carol. But now Carol's not Carol anymore."

    Mike advocates talking about caregiving sooner

    According to "60 Minutes," Mike said he hopes his experience will help other people better prepare for the effects of Alzheimer's disease. LaPook writes, "When Carol was still Carol, that would have been the best time to discuss the kind of caregiving decisions Mike Daly eventually had to face alone" (LaPook, "60 Minutes," CBS News, 4/22).

    Next, get URMC's end-of-life conversation prompts

    Download URMC's conversation prompts to start improving end-of-life care for patients.

    Download Now

    Topics

      X
      Cookies help us improve your website experience. By using our website, you agree to our use of cookies.