I miss my mom and dad. Both have been gone for a few years, and while I sometimes feel their presence, their leaving created a hole in my world that cannot be filled. I even missed them while they were still here. I grew up, made a life as a wife and mother, and now I'm a grandmother and still I miss them every day.
When life's challenges became so very hard, as they inevitably do, I would sometimes think, I want my mother. I want to go home.
I understood that it wasn't possible. It wasn't even what I truly wanted. But, for a few moments, I longed for things to go back as they were when I felt safe. When someone else was responsible for making decisions and bidding me goodnight while they worked out what to do next.
Maybe because of those longings I understand why people with dementia often want to go home.
Perhaps we are taking their requests too literally. They may be expressing out loud the thoughts that sometimes came to me: I am overwhelmed with challenges, and I want to feel my mother's hug and hear my father's voice assuring me everything will be okay. Or, I want to hold my children in my arms again. I want to kiss my husband goodnight.
As caregivers, we know better than to argue when a loved one insists they want to go home. But sometimes we do it anyway. We can't help it. The frustration and pain get the best of us when nothing we do seems to get through to them.
"I want to go home now!"
"This is your home. You live here now. Please go back to bed."
"Get out of my way. I'm going home and you can't stop me."
"Why are you doing this now? It's the middle of the night. I need to get some sleep. I'll take you home tomorrow."
"You said that yesterday. You lie to me all the time. Why are you keeping me here? I hate you!"
"You hate me? You ... hate ... me? I'm the one who takes care of you every day. I changed my whole life to take care of you and you hate me? You're killing me with this. I love you, but I am sick and tired of this BS, and I'm sick and tired of you!"
And then the guilt sets in. "How could I say that? I know better. He's sick and he doesn't know where he is right now. God, what's wrong with me?"
He's upset. I'm upset. He wants to go home. He wants his life the way it used to be and I feel the same way.
Eventually, exhaustion takes over and the confrontation ends. Until next time. What to do then?
What if, instead of insisting he was home or making a promise to take him home tomorrow, I had tried something else?
"I want to go home."
"Tell me about your home. What is it like there?" I'd have responded, my voice soft as I reached out and touched his arm.
"It's home. It's where my family is."
"It's very nice there, isn't it? What will you do when you get there?"
Once he started sharing his memories I would gently lead him away from the door and guide him back to his room. Crisis averted, for the time being.
I know this scenario won't work for all of you. Every person and every moment coping with this disease is different. I would never say I know what it's like for you. What I do say is, "I know how hard it is and I hope this helps ease things for someone today."
I look forward to hearing from you.