The Dementia Queen Exploring the evidence, the anecdotes, & the hunches- a rehabilitation perspective
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“I want to go home” is the single most common sentence I hear on a daily basis. Many caregivers struggle with this lamentation and grow frustrated with the inadequacies of each answer. Situations can vary, but the desire for home is strong and universal. I see the effect on the caregivers:
You are frustrated… I know how easy it is lose your cool. I know you just explained the situation to him five minutes ago. I know that he says he understands, but rehashes the issue anyway just to get a rise out of you. Of course, that is not his intention, but that is just how you feel. So the next time you explain it to him, you emphasize your message with a louder voice and halting speech. He cowers a little, and it looks like your message has finally gotten through. But five minutes later, he tells you he wants to go home again. The next time you reply, you nearly lose your temper because there is a limit to the number of times you can explain the same thing over and over. And again, five minutes later…
You are sad... You know he is grieving the loss of his home. You know this place will never be “home” to him and you do your best to make him comfortable. But the “I want to go home” cries break your heart. You wish he could go home too.
You are helpless... You are at the end of your rope. You have tried everything, but nothing puts the issue to rest. He or she might even be demanding to go home while standing in his or her own living room. You can’t make him understand. You need options, reinforcement, and peace.
Here are some tips for dealing with the exhausting topic of “home”:
- Re-orientation doesn’t work. There is no substituting your reality for that of someone with dementia. Presenting the facts in an organized, fool-proof manner will not override his perception of the truth. Remember that a disease is destroying parts of the brain that process language, remember things, and understand concepts. Reasoning just doesn’t work. Arguing each point will only make each of you more agitated. Meet him where he is and go from there.
- Define “home”. Many caregivers try not to feed the topic. They avoid any words that may trigger the issue. Redirection and distraction may work temporarily, but ultimately the topic will come up again. Go there. Find out which “home” she is talking about. Is it her childhood home? The home she raised her children in? Sometimes the best way to diffuse the urgency about home is to embrace the memory of it- enthusiastically. This is validation. Sometimes asking very detailed questions about the physical home (the closet under the staircase- what’s in there?, the basement, the attic…) feels like you are visiting the place with them. Look through photographs. In many ways, you are helping them “go home”.
- Replace the repetitive behavior with another. Repetitive behaviors are very common in middle stage dementia. Repeating the same thing over and over again is NORMAL in this stage of the disease. Repetitive behaviors such as wandering, pacing, and verbally repeating the same question are an outlet for anxiety and character traits of more primitive brain function (1-3 year olds typically repeat the same movements or babble the same sounds over and over again). It is the caregiver’s job to provide a safe outlet for repetitive urges- sit in rocking chairs and sing, go for a walk, swing on the front porch. Gross motor, repetitive activities may reduce the incidence of the “I want to go home” mantra.
- Take a break. You will be a more effective caregiver if you can step outside the situation and recharge your batteries.
- Sometimes “home” is a feeling. Is the desire to go home a longing for companionship? A need to be productive? A need for security? Love? Purpose? It’s probably a little of all of those things. Having a pet to care for or visit with can help provide a role to play… that of purposeful, caregiving companion. Sometimes “home” is nothing more than a feeling of being “normal”.
Home is a sense of well-being. Try to remember that the next time you have to explain a situation for the umpteenth time. Perhaps there are other ways of providing a sense of belonging that will soothe and comfort a lost soul searching for home.
There is no easy answer. Please share your suggestions!
I care for my granny in her home, but she still repeatedly says that she wants to go home. She thinks that she has two homes and that she goes to yhe other one and leaves all of her things there, even though she hasn’t left. I really don’t know what to say when she cries and screams that she wants to go home. She also thinks that she has two daughters (when in fact, she only has my mother and two sons, one deceased.) My mother lives wiyh us as well and is there atound the clock, but granny still thinks that she has two daughters, both with the same name and both have been married to the same men and both have been through the same experiences. Despite all the assurances that there is one house and one daughter, she still cries and screams that she wants the other ones. I could really use some advice.
Hi Brittany,
Confusion like that is common, and there is just no convincing her reality that your reality is the more correct. It’s really her behavior and the angst behind her words that is the issue. She might feel like something is missing, or the situation doesn’t feel right, or if she only had x,y, and z, then everything would feel more normal. Trying to convince her that her current situation is the best you can do doesn’t satisfy that angst. There is no way that your words will make rational sense.
You can always go the pharmacology route and get medication for anxiety. For many people that does help, but it may also lead to sleepiness or lack of engagement in other ways. Or she just may flat out refuse to take it.
One suggestion I would make is to emphasize repetitive, gross motor activities when she’s upset- or when you can sense her anxiety rising. Walking, dancing, sweeping, rocking, swinging… gross motor activities that are repetitive are soothing, which is why so many people in the middle stages wander and say the same things over and over again.
I would also pay attention to the time of day this usually comes up. It is a common phenomena with sundowners in the late afternoon and early evening. Is she getting a nap during the day? Does something trigger the journey down that path? Does food comfort her?
Let me know if any of this is helpful. If not, we can put our heads together and try to figure something else out.
Thanks for commenting!
Yes! ‘Tell me about your home’ is my favourite in this instance. Sometimes it’s the only way to draw out a resident who usually doesn’t speak to me, or about their past. I ask how we’d get to their home. Sometimes I say we might be able to go- another day. That’s not terribly honest, though! Sometimes I offer them a trip somewhere else at a suitable time. I still say the ‘this is your home’ thing, though. I know it’s not terribly constructive or helpful (I can’t *make* you feel at home in the care home), it’s borne out of my sincere wish that they really fet at home with us.