Patti Davis, daughter of former President Ronald Reagan, said caring for a loved one with Alzheimer’s Disease is wrought with heartbreak and difficulties, but it is the caregivers that so often are in need of care themselves.
In an article for the Los Angeles Times, Davis, whose father lost his battle with the mentally debilitating disease that affects more than 5 million Americans, said the time spent worrying, feeling guilty, and caring for a loved one with Alzheimer’s is so comprehensive that little time is made for the caregiver to take care of himself or herself.
How Patti Davis, Ronald Reagan’s daughter, stepped in to make sure people would ask care-givers: how are you doing? https://t.co/csdrDbi0ja
— braamenbroer (@braamenbroer) April 17, 2016
The stress and heartbreak of watching her father slowly slip away led Patti Davis to form a free weekly support group — Beyond Alzheimer’s. After five years, the group will move from UCLA to St. John’s in Santa Monica to continue its mission of caring for caregivers.
Davis said all too often, caregivers are well-equipped with facts and knowledge about the latest findings on Alzheimer’s, but are ill-equipped to deal with the pain of caring for someone they love and who was so vibrant and alive at one time.
“People come [to the support group] for the first time and they’re armed with all these facts about their mother or their father. They say, ‘They’re on this medication, they were diagnosed on this date, and their doctors say this and that.’ And then I say to them, ‘How are you doing?’ And there’s this moment where they have to process the question and, almost inevitably, that’s when the tears come. It might be the first time in a year or more or ever that they’ve been asked, ‘But how are you doing.'”
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Davis told the LA Times that caregiver stress is very real and overwhelming.
“The person who has Alzheimer’s, they don’t experience stress in the same way that a caregiver does. For them, every moment is new. The caregivers are the ones that worry about the future and worry about the past and worry about the present. They’re constantly worrying about finances, what is going to happen next, it never lets up. But they feel like, ‘I don’t have the disease, I’m not entitled to the attention.’ They start to feel less important, less significant.”
Davis emphasized that caregivers must learn to take care of themselves first, which translates into finding a way “to have their feelings understood and nurtured and discussed.”
Davis added that guilt often plagues the caregiver — even the guilt of wishing a loved one’s death would come sooner rather than later because of the pain caused by watching a loved one suffer, forget precious memories and family members, and eventually, die.
“Sometimes caregivers are dealing with someone who can no longer speak or is bedridden. And they wish it would be over, they’re wishing that death would come. They feel really self-conscious about admitting this to anyone else. Someone on the outside would say,’That’s terrible, that’s a terrible thing to say.’ But [inside the support group], we all get it. That wish for it to be over. We’re a safe place where you can admit that.”
— The Youth Movement (@YouthAgainstAlz) March 16, 2016
Davis said some of the most painful moments for a caregiver of an Alzheimer’s patient comes in the earlier stages, when a person who has the disease knows there’s something wrong with them and becomes frightened.
“I remember my father standing in the living room of my parents’ home and saying, ‘I don’t know where I am.’ It was devastating. It’s another oddity of this disease that as it progresses and gets worse for the patient, things can actually get easier on the caregiver, but that also comes with its own type of guilt for the caregiver.”
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Patti Davis encourages caregivers to seek support while traveling the difficult journey of caring for a loved one with Alzheimer’s Disease.
(AP Photo/Chris Pizzello, File)