Dementia and pleas to go home: how to respond?

People with dementia often express the desire to go home. They may repeat this request over and over. If you’re a care partner of a person with dementia, it’s natural to feel frustrated. This post will help you understand dementia and pleas to go home so you can respond better.

There are better and worse ways to react when a person with dementia says they want to go home. I’m going to tell you about a mistake I made in hopes that you’ll be able to avoid a similar one.

My mistake in dealing with dementia and pleas to go home

I’ve been visiting my mom this week. She has early to moderate dementia and lives in a care facility on the opposite coast. She converses quite easily and in many respects seems fine. But the disease has wiped out her short-term memory and impaired her decision-making skills.

Independence is key

Like many with cognitive impairment, this brilliant woman refuses to acknowledge that anything has changed. It’s important for her to maintain a sense of freedom and control. She’s been in residential care for a year and a half. But she’ll tell you she’s there only temporarily. She’s waiting for people to remodel her house.

She’s packed up her room and put sticky notes with checkmarks on cabinets and drawers she’s emptied. Bulging tote bags stand next to the door. She rolled up the cord of the CD player I bought her so she can take it home with her. Meanwhile, she doesn’t play music.

About the fourth time Mom told me she was ready to go home, I got frustrated with trying to divert her attention. I replied, “Mom, I think going home would be hard for you. You live at the top of a big hill and don’t drive anymore.”

Independence under threat

Her reply: “I do so drive. What are you talking about?”

Here I could have changed the subject. I could have excused myself for a few moments. But no. I answered in the same reasonable tone as she’d used in speaking to me. “Mom, you haven’t driven for over a year. The doctor took away your driving permission.”

“What doctor? No one told me!”

I kept going. “The doctor who diagnosed you with dementia.”

At my mention of the D-word, my mother lost it. She started to cry. Put her head down on the table and said she didn’t want to live like this. Announced she’d rather drink weed-killer. (Yes, I come by my dramatic expressions honestly!)

The aftermath

I immediately realized what I’d done, but it was too late. Mom was a mess. I apologized, told her I hadn’t meant to upset her. But it didn’t help.

After she’d settled down a bit, she told me I needed to learn to be less blunt. That I could improve the way I talked to people and learn to be more “sales-y.” By now I knew better than to disagree.

Lesson learned

I’d read previously that you shouldn’t argue or try to use logic with a person who has dementia. That the best plan is to agree and redirect. But especially when you’re talking with someone who seems rational on the outside, it’s hard to remember that explanations won’t help. That they may even cause harm – like mine did.

This conversation helped me learn experientially what I’d only read about before. It showed me firsthand how highly most of us value autonomy. How a person with dementia can try so hard to maintain a sense of autonomy that questioning it will send her into a tailspin. The strong desire to stay independent is one reason people reject a diagnosis of cognitive impairment.

Dementia and pleas to go home: examples

To improve your response to someone’s pleas to go home, it’s important to discern what the person with dementia is really saying. “Home” can mean a place, a time or an emotion. Or all three.

Place

Someone with dementia may ask to go home because they’ve recently moved to a relative’s house or care facility and don’t recognize their surroundings. They also can voice the request when they’re still living in the house they’ve resided in for many years.

Especially if you’ve moved in to care for a loved one or brought him back to your house, these requests to “go home” can feel insulting. After all, you’ve probably gone to great effort to help him. But don’t take his comments personally. What he’s really saying is that he feels confused, maybe even agitated. He wants to find that place where things are familiar and comfortable.

In addition to repeated requests to “go home,” your loved one may pack his belongings and even try to head out the door. It doesn’t help to explain that his home is 1000 miles away – this won’t make sense to him.

Time

Besides changes in their physical environment, people with dementia may want to return to a previous time in their lives. They may focus on their childhood or another time they recall as happy or simple.

Emotion

Sometimes a person with dementia asks to go home as an expression of the desire to feel nurtured and connected to family life. “Home” may be a place where they feel secure, loved and accepted. It may also signify a place where they lived independently, in complete control of their schedule and activities.

As a care partner, listen for what your loved one is saying when he asks to go home. Try to notice the emotion behind the words. When you understand what he’s really saying, you won’t take the request as personally. And you’ll be better equipped to respond.

How to respond: guiding principle

The most important thing to bear in mind is that you need to enter your loved one’s reality. This is what I neglected to do when talking with my mom about going home. Your loved one can’t enter your world of logical explanations. You have to meet her where she is.

A fantastic book to help you communicate with a person suffering from dementia is Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease,*  by Joanne Koenig Coste.

The author’s husband was diagnosed with early-onset dementia not long after their fourth child was born. After he died, she began to work in a nursing home. Her tips for interacting with people who have dementia come from personal as well as professional experience.

How to respond: basic technique

When a person with dementia asks to go home, you’ll probably want to try different responses to see what works best. However, in every case you should:

• avoid reasoning and explanations
• agree, then redirect and distract

How to respond: specific suggestions

• Reassure and comfort your loved one. Hug him or take his hand.
• Don’t say, “This is your home now.” From the point of view of the person with Alzheimer’s, it’s not.
• Agree that you’d like to go home, too. Suggest you can go together after drinking a cup of coffee, folding the laundry, or having lunch.
• If your loved one enjoys car rides, offer to take him home. Drive around for a while and then return to where he’s living now.
• “Go home” with photos. Look at pictures together with him and reminisce.
• Ask him to tell you about his home. Listen to him. Ask different questions to stimulate his memory. For example, “What’s your favorite room in the house?” or “What’s the first thing you’re going to do when you get home?”
• If your loved one moved around a lot, ask, “Which home do you mean?” Pay attention as he talks about home.
• Validate your loved one’s feelings by saying something like, “That sounds wonderful. You must wish you could be at home now.”
• Don’t take him to visit his former home. This may overwhelm the person with dementia, causing him to become more agitated. And it won’t stop the pleas to go home, either.

But isn’t it wrong to lie?

Some people resist telling a loved one with dementia that she can go home. No matter whether you respond, “Let’s go tomorrow,” or “Let’s go after we have a snack,” you’re still lying.

But, as Koenig Coste says, “A fib-let is better than a tablet.” She cites a common nursing home experience where an aide tells a resident with Alzheimer’s who asks to go home that she already is home. At which point the resident becomes agitated and starts acting out. Then the nurses “calm” her with medication.

In such situations, Koenig Coste recommends the small lie as a way to avoid over-medicating and preserve a resident’s dignity. By helping her recall details and feelings about her home, you’re also permitting her to experience a higher quality of life than she’d have if sedated and “out of it.”

Don’t be too hard on yourself

Your loved one with dementia may say things that hurt your feelings. But it’s the disease talking. Keep these points in mind as you deal with dementia and pleas to go home:

• Don’t feel insulted if she doesn’t acknowledge or appreciate all you’re doing to help her
• If you find yourself losing patience, take a “time out” from the situation
• Acknowledge that we all make mistakes. You’re not perfect, but you’re doing your best

A happy ending

I went back to see my mom the following day, and she showed no recollection of having felt upset the day before. She enjoyed the coffee I brought her.

We went to the mall and had lunch at Chipotle. After that, we bought a few things at her favorite store, Target. We took a selfie on the bench outside her building.

Then, tired from the outing, Mom returned to her current home without complaint.

We didn’t resolve anything. She’s still going to ask to go home.

But we had a good day together. And that’s something we both can cherish.

 

Images via: Shutterstock