I Have Dementia. What I Want You to Know.
By Pastor Curt Seefeldt
It’s hard to know what anyone is thinking, much less a person who struggles to communicate his or her thoughts. But if we could connect to the mind of a person with dementia, this might be what he or she would want us to know.
“I am still me. If you knew me before I had dementia, I haven’t left.
“If we used to do stuff together, I would probably like to visit with you.
“If I’m chatty but you can’t actually understand what I’m saying, listen anyway. Chances are that I am talking because I’m trying to keep you from leaving, and I appreciate someone who is willing to listen. It doesn’t happen too often. Just keep looking into my eyes so that I know that you are paying attention. If you can handle that, I’d really like you to come back.
“If it takes me a long time to say something; be patient. Dementia robs my ability to find the right words. Try offering suggestions. You will sense if I appreciate your help or if I don’t like what you are saying. You will know by the way I look at you. It doesn’t hurt to try one thing, and if it doesn’t work, try something else. Really, you can’t mess this up.
“If I don’t talk, talk to me. Tell me stories about the experiences that we shared together. If you have pictures, bring them. Or, bring stuff that might remind me of the memory you are trying to share. Also, bring along my favorite food because if I liked it before, I would probably enjoy it now.
“If you can’t think of anything to say, that’s okay; just sit by me. I might like to have someone with me for a while. You will know if you are making me uncomfortable. If you come, you just might think of something to say . Maybe I just need a hug.
“Some days it would just be nice to have someone read to me. You probably know if I have a favorite poem or saying, or my favorite Bible readings. Tell me that Jesus loves me and forgives me. Remind me that in heaven, you and I won’t need to work around my memory loss to have a conversation.
“Pray with me. A lot of times I will remember a familiar prayer, like the Lord’s Prayer, if you just get me started. For me, that’s the hard part—getting started. If I don’t say the words, look at my lips. You might see me moving them without saying anything. You will know when you are connecting.
“If you are brave enough, sing a song that you know I know. Sometimes I will hum the melody or sing the words if you help me to remember them. Songs with a lot of repetition are best because it may take me until the third or fourth time around to figure out how to join you.
“Don’t think that you need to come up with a new idea every time you visit. In fact, if you found a story, song, or prayer that connected with me once, it will probably connect with me the next time you come. That’s the way this dementia thing seems to work.
“During this pandemic, you may not be able to come to see me. My memory care or community setting might not allow visitors. See if a phone call will work. If you write a short note, the people who work here can read it to me. Or, send my favorite snack. I may not know who it was who sent it to me, but I’ll enjoy it anyway.
“If I’m still living at home, please visit with the person who takes care of me. He or she has a big job; sometimes there is anger or sadness. Even though I’m here, I think sometimes he or she gets lonely, and I know there isn’t a lot of opportunity to take breaks. A visit or call is appreciated. If you can find a way to lend a hand, that would really help.
“I know you can’t cure this disease. I know you will be confused by some of the things I say, or even shocked by the things I do. But I’ve always thought that my best friends aren’t the ones who come because they have all of the answers. They are the ones who just show up.
Until we can have better conversations in heaven, I remain…
Your friend