My mom was diagnosed with Parkinson's disease in her late 70s. It shocked us all, as she had always been active and independent. The disease progressed slowly at first, but eventually, it affected her memory, her ability to think clearly, and her ability to care for herself.
One of the things that my mom started to say a lot was that she wanted to go home. At first, I thought she meant she wanted to return to her childhood home. But as her dementia progressed, I realized she wasn't talking about a physical place. She was talking about a feeling of home. She talked about a time when she felt safe, secure, and loved.
I tried to help my mom feel at home by creating a familiar environment for her. I put up photos of her family and friends and played music from her past. I also encouraged her to reminisce about her life. Talking about her memories helped her feel connected to her past and the people she loved.
It wasn't always easy to care for my mom. She could be confused and agitated. But I tried to be patient and understanding. I knew that she was still the same person inside, even though the disease was changing her on the outside.
Mom often experiences time-slips, a phenomenon that can occur in people with dementia. They are moments when the person with dementia seems to "slip back" in time to a different place or time in their life. "I need to pick up the kids from school, or I need to call mom," were demanding statements she posed to me. These kinds of words often baffled the caregiver. They can be a confusing and upsetting experience for the person with dementia, as they may not understand why they are suddenly in a different place or time.
In my story, my mom's time-slips were often triggered by something unfamiliar or a change in her pattern or routine. For example, if she approached her home from a different direction, or there was a strange car in her driveway or a stranger in her kitchen, mom wanting to go home often-triggered extreme behaviors. At first, I tried to reason with her and argue, "Yes, this is home," which worsened the situation. Finally, I learned to agree, and we walked away and later returned in another direction, gently talking about her garden she planted. The porch swing that she and Dad would sit on, all the while gently reassuring her of familiar items and around us that we were now going home. Often this worked.
I learned to accept my mom's time-slips as part of her dementia. I knew that she wasn't trying to be difficult or confusing. She was simply experiencing the world differently.
My mom passed away a few years ago. I still miss her every day. But I'm grateful for our time together and her lessons about love, patience, and understanding.
It's not uncommon for people with dementia to say they want to go home. This can be confusing and frustrating for caregivers, who may not understand why the person is saying this. However, there are a few reasons why a person with dementia might say they want to go home.
If a person with dementia wants to go home, it's essential to listen to them and try to understand what they're saying. It's also important to be patient and understanding, as they may be unable to explain their feelings clearly.
It's also important to remember that this question has no one-size-fits-all answer. The best way to respond to a person with dementia who says they want to go home depends on their specific situation and needs. You can help them feel safe, secure, and loved by being patient, understanding, and supportive. Most important, be kind to yourself, and don't feel guilty when you guess wrong or become frustrated and angry with them.
I hope this personal story helps you to understand what it's like to have a parent with dementia. It's a challenging experience and an opportunity to show your loved one how much you care. You can help them feel safe, secure, and loved with patience, understanding, and support. The Alchemy of Home in my book, Taming the Chaos of Dementia, offers a deeper dive into the concepts of home for our loved ones with dementia.