A friend, Gordy Cannon, on Facebook posted this thought and prayer. His wife is also dealing with Parkinson’s mixed with dementia. His image was different than this offering by an eldercare organization.
It is a wondrous world. This poem was written some time ago, not long ago, a mere nine years according to this blog. Nevertheless when I read it this morning on a post from Gordy, I felt the need to research and dive in for a bit. The poem moved me.
When I wander don’t tell me to come and sit down. Wander with me. It may be because I am hungry, thirsty, need the toilet. Or maybe I just need to stretch my legs.first stanza
Cheryl has this activity in the afternoon and evening. If I stay with her she thinks I am hovering like a helicopter parent. Perhaps I need to be with her instead of hovering. I am not certain of where her mind is and I probably never will be. She might tell me she is going to the bathroom and she wanders into some other room. I panic when this happens. Maybe a little less panic on my part. I have at other times pointed the correct door out to her. She says, “Oh. Yeah.” and goes into a bathroom.
When I call for my mother (even though I’m ninety!) don’t tell me she has died. Reassure me, cuddle me, ask me about her. It may be that I am looking for the security that my mother once gave me.second and third stanza
When I shout out please don’t ask me to be quiet…or walk by. I am trying to tell you something, but have difficulty in telling you what. Be patient. Try to find out. I may be in pain.
Cheryl does not call for her mother. She does, however, talk to her often. She sees her at the dinner table and she wants to make a place for her. I am guilty of reminding her that her mother has died. Sometimes there is a time and place for that but at dinner when she is remembering her mom it would be better for me to help that memory. In her heart she knows that Elaine is no longer with us and I rarely show her any of the many Facebook postings that her youngest brother puts up. Those can reduce her to tears, especially in the evening when she has a hard time distinguishing the past, present and future. She has kept many of Elaine’s thank you cards and I have read them with her. Often we had Elaine and Bob over for Sunday dinner. After Bob passed away, we had only Elaine. She always wrote a thank you note. These cards always make Cheryl teary eyed as she remembers the better times but misses her mother.
When I become agitated or appear angry, please don’t reach for the drugs first. I am trying to tell you something. It may be too hot, too bright, too noisy. Or maybe it’s because I miss my loved ones. Try to find out first.fourth stanza
It is so very frustrating for Cheryl to be unable to recall the correct word or name of something. I try to patiently wait and see if the word comes. Sometimes (often) another similar though wrong word will come and it is my duty to understand, not correct her. Sometimes I will ask a question to clarify what she is telling me. That does not get her upset. Usually she will say, yes I was going to say… Mostly I can conjure enough of the story to keep up. I never thought about it before but it is okay to ignore incongruities when they are unimportant. The only important times are when Cheryl is relating incorrect information to someone who knows little about her affliction or when she makes up a story out of whole cloth and tells her doctor then I will jump in with a correction but gently so she is not embarrassed. When I embarrass her she thinks I am being mean.
When I don’t eat my dinner or drink my tea it may be because I’ve forgotten how to. Show me what to do, remind me. It may be that I just need to hold my knife and fork I may know what to do then.fifth stanza
Making menu choices is actually the worst experience for both of us. I may have to reminder her several times of what she told me earlier when the waiter was away from out table. Lists of choices and ingredients can be overwhelming.
When I push you away while you’re trying to help me wash or get dressed, maybe it’s because I have forgotten what you have said. Keep telling me what you are doing over and over and over. Maybe others will think you’re the one that needs the help!
Sometimes I am allowed to help. Sometimes not. I often have to remind her “no church today.” She will become angry and anxious that no one tells her anything. Or becomes angry when everyone “keeps changing the schedule.”
With all my thoughts and maybes, perhaps it will be you who reaches my thoughts, understands my fears, and will make me feel safe. Maybe it will be you who I need to thank. If only I knew how.
At the very end of her life my mother awakened for a few minutes as I was sitting with her in her room at Bridgeway Pointe which is an assisted living community where lived out the last fifteen months of her life. When I walked into her room Mom was quietly dozing in her bed. I sat in the usual chair I sat in and waited to see if she would awaken. It was after her dinner time and she often took a nap after dinner. After a few minutes, maybe half an hour, she woke up and looked over at me. She did not have her glasses on but she said, “Paul, is that you?” I replied, “Yes it’s me.” And then she said something that I was not expecting. She said, “Thank you for all your help.” After that she dozed off again. It was the last conversation I had with my mother. She passed away a couple days later. It still makes me cry.