They fight with the government, they tussle with health insurance companies and they struggle against the medical establishment. Caregivers for Alzheimer's patients deal with many types of confrontations but one of the toughest battles they often face takes place within their own families.
Complicated, sometimes fractious family histories have a tendency to re-emerge after a medical diagnosis such as dementia, experts said, with long-held resentments, anger and jealousies spilling over into caregiving. Adult children who cannot bear to see their parent transformed, siblings who don't want to be primary caregivers yet who want a say in the kind of care the parent receives and disagreements over how money - and potential inheritances - are spent are just some of the clashes that erupt.
Ellen Eichelbaum, a Northport gerontologist who often counsels families in conflict, said the strain of caregiving - both money and duties - can break up marriages, cause fractures in otherwise healthy relationships and leave caregivers angry and depressed. Because families so rarely plan ahead, she said, it's only when an emergency arises that these issues emerge.
"When a crisis comes up, 90 percent of the time at the very beginning siblings say 'I'll be there, don't worry,'" Eichelbaum said. "But then later on, we have family members who live in the same house who don't give care. That's how down and dirty it gets."
Teepa Snow, a dementia care specialist and trainer based in North Carolina, said of all diseases, dementia is the one that ultimately tears families apart over time. Snow said the first time the tensions rear up is when getting a diagnosis, with family members disagreeing with the diagnosis or in denial about a loved one's condition. The next time things get strained, Snow said, is when behavioral issues arise, such as wandering or driving and family members disagree over how to handle these problems. And then finally, Snow said, family members butt heads over end of life issues, whether to let go or continue care and in what fashion.
"Typically we find that either families pull it together and get their act together and deliver the care well or there's this continuing struggle," Snow said.
Long-standing, assigned family roles take on a new dimension with caregiving, Snow said, and can hinder the process. For instance, she said, a man who has dementia may want his son to handle all money matters and his daughter to provide the caregiving because those are the gender roles he became accustomed to during his life, even if they aren't accurate.
"We may have a son who is a poor money manager," Snow said. "Now he's in charge of dad's money. Well, he doesn't really want to spend the money on dad's care, he wants to hold on to it just in case for inheritance. Well, the daughter is wearing out . . . she would much rather hire somebody, but he controls the money."
John Rauh, 41, of Yaphank, found himself at odds with family members when he took in his parents, who were both diagnosed with Alzheimer's. Even though he was serving as primary caregiver, questions began arising about the decisions he was making and the money he was spending on their care.
"One thing you learn when you go through something like this, your family and friends around you, they're either going to rise and help you and protect you or they're going to fail you spectacularly," Rauh said. "Mine failed me, huge. I have family that I'm not even speaking to at this point. "
Rauh said his "soul hurts" after a year of caring for his father John, 84, who passed away in January.
"You have the people that tell you or tell other people in your family what should be done, how you should be handling it," Rauh said. "Yeah, you get it all. What you don't get a lot of is, 'I know you're doing everything you can.'"
Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Hospital in Glen Oaks, said that she can understand the difficulty adult children have in facing dementia and providing care.
"This disease is very frightening for many people," Vogel said. "Watching your parent revert back to a child is not an easy thing to watch and the kind of care they require - not everyone has the strength to provide that."
Because of this, she said, she has seen the tensions that rise, particularly among siblings. "I've dealt with families that had 10 and 12 siblings," Vogel said. "One is providing care and the rest of them just can't deal with it. And the one who's providing the care is angry and needs the support."
Even stickier is when the healthy parent begins dating while the spouse with dementia is in a nursing home or assisted living facility.
"When the healthy parent chooses to 'move on' and create a new life for themselves, adult children feel torn between maintaining old relationships - 'for better or worse' - and recognizing that their well parent has normal needs and desires for companionship and love," Vogel said.
Pat Moffett, 62, of Great Neck, said tensions first arose with his children when the time came to admit his wife Carmen, 66, to a nursing facility in 2003. Even after doctors explained to them that their mother could not be safe at home, "I still became the bad guy who threw mom away," Moffett said.
Adding to the rift was Moffett's later desire to begin dating again. "You really have to move on with your life," he said, echoing his therapist's advice to him at the time to help with his depression. But while three of his children have been accepting, for the two already upset with his decision to place their mother in a nursing home, it is a betrayal.
"And we haven't spoken in years," Moffett said. "So it just breaks up families like that."
Dating while still married to an Alzheimer's patient is an issue that comes up frequently, Vogel said. "I have spoken with many spouses over the years and have given them 'permission' to go on with their lives, especially the spouses of young onset patients," she said. Vogel said she tries to diffuse the anger of the children by telling them that the decision to move on is "a tribute to the relationship that their parents had when all was well."
For caregivers who feel resentment toward family members perceived as not pulling their weight, silence can be the greatest enemy, Vogel said. When caregivers feel overwhelmed they need to make sure to delegate duties, she said, and seek specific help. "The one thing I always advise them to do is to ask," Vogel said. "If you don't ask you won't get. Be very specific with family members, what kind of assistance you need. Ask somebody to take over the financial piece. Ask somebody else to do the medication piece, make the doctors appointments."
The advice that Eichelbaum gives to families who have not yet reached a crisis point, is to begin talking about the future and planning care. "Have the siblings talk about 'what do we do if mom gets sick,'" she said. "That way, when something happens, you won't be in such a mess."