Dear Family Advisor
My parents, who have dementia, flat-out refuse to move into assisted living. How do I get them to move without making them hate me?
Last updated:September 29, 2008
My parents have both been diagnosed with dementia. My father ticked his doctor off, and the doctor sent social services to their house. Now everyone (including me) agrees they need to go into assisted living, most likely a "memory care" section.
But they refuse to move and are nasty when I try to discuss it with them. They firmly believe they are moving back to New Jersey, to a house they no longer own. How do I get them into a facility and get them to stay without making them hate me forever? (I don't presently have guardianship, but I'm trying to find a way to afford to file for it.)
Getting parents to move for their safety, but against their will, is one of the most trying situations adult children face. There are actions you can take to make it happen and things you can try to make it easier for them. But in the end, you may have to accept that looking after their health and safety is more important than not hurting their feelings.
To embrace that responsibility, you need to recognize that your relationship with them is changing. Caregiving to parents with dementia turns our well-defined role as daughter or son on its head, forcing us to see ourselves differently. We have to grow up in a whole new way.
Loving your parents now means making tough decisions on their behalf, as they did for you when you were a child. This doesn't mean treating them like children, but loving and respecting them as they are now while being vigilant about their well-being.
First, you'll need to secure guardianship. You can search the American Bar Association's lawyer locator for a referral to an attorney in your area who specializes in guardianships or elder law. If you're willing to do some of the filing and processing yourself, you may be able to keep a lawyer's services to a minimum and cut costs. Also, see if your local court has a self-help center, which could also keep your legal fees down.
You'll need to supply evidence of your parents' mental or physical inability to make decisions for themselves, so contact their doctor about providing a report or letter that can be used in your application. You say that "everyone" agrees that your parents need to go into assisted living. If that includes social workers or other eldercare professionals, enlist their support.
Spend some time with your parents when you visit them. This will give you a better chance to assess what problems they may be having on their own or indications that their living situation is unsafe (forgetting to take medicines or pay bills, leaving burners on, living in unsafe or unsanitary conditions, and so forth). You can also use longer visits as an opportunity to build or strengthen their trust in you. This may sound hypocritical, but if they're suffering from dementia or Alzheimer's, it's in their best interest. Ideally, as their dementia progresses, they will come to accept your judgment and rely on you for it. Your parent's fixation on "moving back to New Jersey" isn't unusual for people with dementia or Alzheimer's.
Many people become focused on something impossible (contacting someone who has died, going to a job that no longer exists). Don't argue with them -- as it won't help. Redirect the conversation if possible, or ignore it. Even if you tell them a hundred times that they no longer own that house and can't move back, they'll ask about it again five minutes later.
Begin researching different kinds of care facilities and services in your area. A good place to begin is with the Caring.com Local Eldercare Directory. If you think there's any chance that they can stay home with help, find out about in-home care and other resources in their area.
If you're convinced that assisted living is right for them, I suggest you strongly consider moving them to a place near you so that you can oversee their care and it's convenient for you to visit. Learn about the various types of residencies nearby and find out what kind they can afford or qualify for. Set up appointments to visit the ones that sound best. When you visit care facilities, talk to the staff about your parents' aversion to moving. They are used to dealing with this and will probably have suggestions about how to handle it. You can also learn something about the home's philosophy by listening to their answers.
Do what you can to make moving more attractive to them, but in the end you may have to deceive them into moving. I know that sounds terrible, but if it really is for their safety, then do it. Even if your parents seem to hate you for it, their dementia will probably make their emotions fleeting, so try not to take their anger too personally.
Keep in mind as you begin this process that dementia can seem to come and go: Your parents may sometimes seem completely lucid when talking to other people. Eldercare professionals call this "social convention abilities," and it's something that can be hardwired in our brains -- when someone asks, "How are you?" it's almost automatic to reply, "I'm fine."
This may be disconcerting for you and make you question whether you've done the right thing, but remember that you're basing your decisions about care and residence on what you witness day to day, not on five minutes in a doctor's office or social situation.
I can guarantee that your nerves and emotions will sometimes be frazzled during this process. You may sit in your car and weep after a visit with them. You may doubt yourself at every turn, even when you know you're doing the right thing. Getting support from a caregiving group and advocates who can guide you through this maze can be a big help. And more than ever, you'll need friends, family, and other activities to remind you that life goes on beyond this.
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