When a Parent in the Nursing Home Says "I Just Want To Go Home"


"I want to go home." Nearly any person caring for an elder with dementia has heard this heartbreaking plea, even if the elder is home. It's fairly well accepted by dementia experts that the "home" most elders want to return to is their childhood home, because in later stages of Alzheimer's that is where, in their minds, "home" is.

The same is true when you hear an aged woman with dementia calling over and over, "Mama! Mama!" This woman is a young child in her brain, and she's calling for her young mother. Not every aging person who enters a nursing home or assisted living has dementia. And not every case of dementia is the same.

My parents each had different forms of dementia, but fortunately, they didn't ask to go home. However, since I was a daily visitor to their care center, I heard the plea from many others. I didn't even know some of the people, but it was a heartbreaker just the same. Most of the people wanting to "go home" had Alzheimer's disease.

A reader on the AgingCare forum wrote: "My father with Alzheimer's has been in a nursing home for nearly 3 months, but he thinks it is temporary and that he will be moving out and back in with family. How do I tell him the truth?" As I mentioned above, while he seems to be saying he wants to go back and live with the family, if his Alzheimer's is in one of the later stages, he likely, even if they moved him back, wouldn't feel as though he were home. It's quite probable he'd be agitated by one more move and would still not be "home." But that doesn't make the heartbreaking routine any easier. Caregivers and staff can say repeatedly and gently, "This is your home."

That's okay. But it likely won't help a whole lot. If the person is upset by hearing that, drop it. Arguing will only make the situation worse. This is when caregivers need to take a deep breath and accept that they will continually hear this plea. Expect it. Absorb it. And plan ahead. Then, start the "distraction and redirection" routine.

Handling a Parent Who Doesn’t Want to Live in A Nursing Home

What this means is that, once the plea begins, you perhaps nod your head as a sort of agreement and then gently guide your elder – mentally and/or physically – toward another subject.

If he is using a walker or wheelchair, start moving him toward a window or some object of interest. It's great if the center has an aquarium or birds or other live creatures nearby. I've seen people guide elders toward a chirping parakeet and start talking about the bird. The elder's mind is quickly distracted and the talk can then be redirected toward the bird and what it is doing.

Eventually, the talk may even be turned to appropriate memories. How long will this distraction last? Maybe a minute, maybe an hour. It may not work at all. But it's a start. If the first bit of distraction doesn't work, then try something else. A photo album, perhaps, with some talk about his childhood.

A tip, here, for people who still have their elder at home, but the elder still asks to "go home." Understand what the person wants and then try the same distraction or relearning technique. Some people go as far as taking the person in the car and driving around the block, then re-entering the house. This can work for awhile, but not likely that long. No matter what you do, you will hear it again: "I want to go home." The point here is that no matter what you do or say, likely you will continue to hear the plea to "go home."

Your heart will continue to break. But understanding that the home the person wants likely no longer exists can help the caregiver's "guilt factor" a great deal. Even if you were to pack him up and take him to his last home, he would likely not be satisfied because it's not really the home he means. He doesn't want the home he left three months ago, he wants to go to the home from 60 years ago.

So arm yourself with understanding and acceptance. This is how it's going to be and you can't fix it. Distraction and redirection can sometimes help for awhile, but the plea will continue. "I want to go home." Heartbreaking but common. Sometimes we just have to deal with it.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

Minding Our Elders

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I am tired of reading the comparisson and intended guilt trip about caring for aging parents is like their caring for us as children. It is not a parallel comparison. In raising children, you still have a life and very often a full time or part time job outside of the home. Your life has variety and more so as the child grows and matures. In caring 24/7 for an aging parent, you don't have a life, a job, and your life lacks variety and the only thing ahead of you is your parent's death. Stopping and caring does not mean not going out with friends and dinners or going on vacations. Moms and dads did that while raising children. Stopping and caring for aging parents means making sure their parent(s) are safe; and provided for. The Bible speaks of honoring one's parents and taking care of elderly parents, but it does not say it has to be 24/7 in your home or theirs nor does it say that you must destroy your own finances, health, marriage, relationship with your own children or social life.
jokrisbren, my heart goes out to you! How awful to be in this situation where there are no perfect answers.

From your brief description, the doctors are right and Mom needs round-the-clock care and supervision from trained personnel who are not sleep-deprived and racked with guilt. She belongs in a skilled nursing facility. This is not what she wants and it is not what you want for her. But the fact that she needs it is not the doctors' fault, not the nursing home's fault, not her fault (poor dear), and not your fault. It just is.

Perhaps if Mom could afford 24/7 in-home care that might be an option. But she cannot. You cannot. Again, not her fault, not your fault, not anyone's fault. It just is.

A certain level of guilt feelings seem to be inevitable for caregivers. But please take a hard look at this situation and sort out what you can and can't control. You can visit your mother daily. It is OK to feel guilty if you neglect to do that with no good reason. You can read up about Sundowning and talk to the NH staff about ways to deal with Mom in the late afternoon. You can be reassuring and loving. But you can't make her well and you can't make her rich.

Your mother deserves and needs you to be at your best for her, to do the things you can control and to reassure her and love her. You cannot be at your best if you are consumed with irrational guilt and crying a lot. Those guilt feelings are just not helping -- they are getting in the way.

Think this situation through. Sort out what you can control from what you cannot. Push the guilt into the background and do what you need to do in spite of it. And if this is just too overwhelming for you, please see a counselor who can help you through this most difficult time.

Hugs to you, jokrisbren, and please come back and tell us how this is going for you. We care.

I have worked in an expensive top of the line facility. I saw all the neglect. at night in the day and call bells never being answered. you may as well leave them home alone. I saw residents walking out the front door, and nobody cared when the alarm went off to see who left. next day they r dead in a car they crawled into. Ive seen it first hand and they all are the same.everysingle one. they should all be closed down.your parent goes in and is so upset and depressed, she will die just like that