A TWISTED PATH

A TWISTED PATH
My wife of more than 65 years has dementia. As I navigate this tricky road with her, I have learned a lot. On the flip side, I hope that I have made her journey a little easier - not as her caregiver - but as her fellow traveler. No longer knowing yourself, let alone knowing others, is a very sad commentary. Yet, I feel that I must hang in there and “go with the flow”, accept the syndrome, and do the best that I can for both of us.
During some of my visits with Marie, I am moved to make notes for future reference. I would like to share some of them with you - not expecting pity, but as a learning tool for others who might be already facing- or will be - a similar conundrum.
April 7, 2010.
Today, she said, “Maybe they will let me go and live with you. This is a strange life.”
Marie has been in Laurel Creek, our skilled nursing facility. for over a year now. Almost every time I start to leave her in the dining room, she questions me on how she will get “home”? Today, she asked me if I would stay and take her home. (I surmise that “home” means helping her get back to her room - not literally.)
May 11, 2010.
I was talking to Marie, while visiting her, and she said, “Aren’t we lucky to be together all theses years?” This followed our conversation about her up-coming birthday on May 26. She asked me how old she would be, and I told her 87. She couldn’t believe it! She said, “That’s old!”.
She asked me if I were having dinner with her, and I said, “No, some other time.” She said, “That’s what you always say!”. I was making this note at her dining table, and she asked me what I was writing.
May 15, 2010.
I visited Marie this afternoon, and she looked good. Of course, she always looks good, and I look forward to seeing her. Yet, she said that she didn’t feel well. I asked her where she hurt, She described her pain to me, but it didn’t make sense.
I knocked before I entered her room, as one should do before they entered anyone’s home. The only difference, I didn’t wait for her to acknowledge me, because she is usually sleeping. When I reached her bed, her responses were logical and they gave me a good feeling. When she first saw me she said “I’m glad to see you honey.” One couldn’t beat this touching greeting.
I went over to the recliner to fill out her “Meal Request” form for the next day (Sunday). I hadn’t any more sat down when she said, “You didn’t kiss me.” I apologized, and told her that I had put Vaseline on my lips as they were chapped, and I didn’t want to get it on her. She said, I will take Vaseline on my cheek.” So, I kissed her twice on her right cheek. Then, she said “I love you.”
She laid back on her bed with her eyes closed. I sat alongside in the large blue chair observing her peaceful-looking face. The family knows her as a “worrier.”, yet, I didn’t detect a worry line, furrow or wrinkle in her face! What beauty! My thoughts reflected back on how we looked in the pictures of us together, through the years. She didn’t have the same expression when those pictures were taken. Her beauty has aged gracefully, and I am so thankful that I can still see her face. I have never seen her with long hair, until now. Her gray hair loops on top of her shoulders, and is quite attractive. It is strange, but she adamantly refuses to get it cut. It certainly would be easier for the CNA’s when they wash it.
In about ten minutes, she opened her eyes and said, “How long shall I wait?” (She was referring to leaving for the dining room.) I told her that she could rest another five minutes before we leave. It was amazing! In exactly five minutes, she raised up - sat on the edge of the bed and put on her shoes. Part of her departure routine is to go to the bathroom before we leave - even though she had gone just five minutes before!
Marie walks quite well with the aid of her walker. She wears an anklet that triggers an alarm if she approaches a doorway leading to the outside. The alarm goes off as we pass the first door leading outside. I key in the reset code, and the alarm stops. Marie now senses when the alarm will go off, as we are walking. She will slow down, waiting for me to catch up with her, after pausing to turn off the alarm. Early on, I noticed that if I walk between her and the sensor, it provides a shield to the alarm signal, and it doesn’t sound. I usually walk on her right side. As we near the alarm-sensor area, I shift my course to be on her left side - to shield the alarm signal. Marie must sense this, and moves to her left to crowd me out!
I stand next to Marie at her dining table, until they deliver her meal. (About ten minutes.) She dines at a table with three other ladies. Tonight the CNA parked this obnoxious guy, in a wheel chair, behind their table. He started his loud coughing. All of the nearby diners gave him “the look”. Finally. Marie said that she was going to move to another chair across the room. I asked her “why?” She said “So she wouldn’t have to listen to him.”
I left the dining room, shortly afterwards, when the dinner arrived from the central kitchen. As I left, I ran into Charina the nurse on Station 3. She was giving the various residents their medications. So. I mentioned the offending “cougher.” I told her that the guy coughed so loud he could be heard over at Quail Creek (where I live), a quarter mile away. I also told Charina the guy should be eating in his room, rather than disturb all of the rest of the diners. I told her that not only was his coughing very loud, and disturbing, it was very un-appetizing. She listened to me, but I could read her expression - “What else is new?”
I was talking to our older daughter Anne recently, who had visited her Mother recently. Anne told Marie what a smooth complexion she had. Marie told Anne, “I will have to remember to tell Ray, because he says that too”.
Today, Sue and I were visiting Marie. Nurse, Kathy, came into her room. I was debating whether to tell Marie that Mary, Joan, Sue and I were going to Kauai for a week, on Wednesday. Our conversation pre-empted the need to tell her. Marie didn’t comment. Time is not relevant to her. I presume that she won’t miss us, She didn’t seem to miss me when I was gone for ten days last year. I will have peace of mind, knowing that she will be receiving the best care that money can buy!
RCL - 5/30/10.