"It was the worst night of my father's life," my friend Catherine said of the sad evening a few years ago when her now 80-year-old dad moved her dementia-afflicted mom from their home into an assisted living facility. "My dad had been heroic in his attempts to care for my mother at home. When her deterioration finally proved to be much for him to manage, it was a heartbreaking adjustment."
Sadly, this scenario is more common than one might think. After decades of living together, one parent needs more care than the other can provide. It's not only hard on the parents; it's a devastating situation for children and loved ones, too. You want to help, but you feel helpless in the face of what amounts to a forced separation.What can you do to ease the trauma and provide support for parents facing this circumstance? Recently, I spoke with two eldercare experts who've counseled dozens of families and offer these six practical tips:
- Determine in advance how the relationship will continue.
"Before anyone makes a move, encourage your parents to map out how the marital bond will carry on," says Mary Koffend, president of Accountable Aging Care Management. Of course, if a parent has dementia or Alzheimer's, it could be impossible for them to make such a plan. But assuming they can, "if Dad now lives in assisted living, then maybe Mom comes over every day for dinner." Or perhaps she joins in on a regular activity that they can both enjoy on-site, such as discussions, book clubs, craft sessions, games, gardening, playing cards, or watching television. - Ensure that the facility supports the couple.
"The key is to promote the couple's identity as a couple as much as possible, or desirable, for both partners," says Cheryl Woodson, author of To Survive Caregiving: A Daughter's Experience, A Doctor's Advice. "Make sure the facility is convenient for the healthy partner in terms of transportation, access, and schedule." If transportation to and from the new living facility is an issue, arrange in advance for a loved one or paid caregiver to drive, so that your parents get time together. "Even if it's brief, at least they talk a bit, kiss good-bye, and off one of them goes," says Koffend. - Help your parent with feelings of guilt and inadequacy.
Chances are the parent remaining at home feels tremendous guilt as well as sadness over the separation. "A parent might feel like he's no longer honoring his wedding vows, or that he isn't doing enough," says Koffend. You can be supportive by being the voice that reminds Dad that he's doing all he can. Give him a dose of what Koffend calls "reality therapy" -- in other words, talk him out of wishing for what can no longer be. "Help parents understand the choices they are faced with, and reaffirm that they made the right choices, emotionally and logically," says Koffend. - Get your parents outside help if needed.
Sometimes your best efforts might not be enough, and you need to engage outside support. "No matter how cooperative the facility is, no one can understand how bereft these couples may feel," says Woodson. "Families should encourage the healthy partner to talk to clergy, behavioral health professionals, and/or to participate in support groups with other spouses in similar circumstances." - Help foster private time, if desired.
Contrary to popular opinion, the need for intimacy doesn't end when a separation like this occurs. It might be a little awkward for family members to address (understatement!), but help the couple work through whatever issues might be present in order to get deserved privacy. "For example, if a spouse can't leave the facility for whatever reason, kids can step in and have a very straightforward conversation with the facility's administrators about arranging alone-time for the couple," says Koffend. It's important to understand the concerns of the facility, which might be liable for falls or health issues that occur under their watch. Koffend cites one example of a wife who brought Viagra to her husband in an assisted living facility, which resulted in him having a strong adverse medical reaction. Address concerns and see if you can set fair boundaries. - Expect the unexpected.
Finally, "Don't assume that this transition ends once the initial decision and move are over," says Koffend. "Be prepared for whatever your parents' needs are afterward, when there's sadness or frustration on either side." For some who've spent years caring for a spouse, the transition to living alone can be jarring and rudderless. When primary caretaking is replaced by a facility, you might need to help the parent remaining at home to feel needed and purposeful, whether by encouraging her to see friends or volunteer or simply by facilitating more involvement with her spouse's new life at the facility. "Help your parent realize they have a practical role in the care and upkeep of their spouse who's now living in a new place," says Koffend. "It gives purpose to the visits, even if it's as simple as bringing a few products and a hairbrush to help maintain physical appearance."
Dementia Signage for the Home
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