This is not meant to offend anyone. It does not reflect on my personal beliefs, nor is it meant to be a statement on our culture or current news. It is, however, meant to highlight, some of the challenges, the need for humor, the confusion and the frustrations you may experience when you are caring for a person with dementia.
My mother has reached the point in her dementia where she has difficulty being articulate. Often her words make no sense at all, or a phrase or a few words may give me a hint as to what she means. Then there are times when she is quite articulate and speaks in complete sentences. Several times over the past few months my mother has either made statements or asked questions of me that were quite confusing. Once she looked at me as I was leaving after visiting her at the assisted living and said “So, are you going on a date?”
I answered, “Um, no mom. I am NOT going on a date. I am going home to my husband, John. Remember him?”
She rolled her eyes at me and said disgustedly, “Yes, I remember him, do YOU?”
A week or so later, she said something to me about “that man you are with”. The way she said it, I knew she was not happy. Again, I was quite confused. I was visiting her alone, and she actually really likes my husband so I didn’t think she was talking about him. I asked her a few questions trying to discern what she was talking about, but I just couldn’t figure it out. Later, I even mentioned it to my sister and we were both at a quandary as to what she might be thinking or trying to say.
Mother has complained over the past several months about one of the male aides at the facility. She mentioned him to one of her private caregivers and to me as well. He is a tall, thin African-American young man named Charles. I met him when Mom was going through her extreme delirium this summer and I spent a few nights with her. He works the night shift. He seemed attentive and concerned about mother. Mother calls him “that tall, skinny, Black one.” I have questioned her about why she didn’t like him, but could not get any clear answers. I even asked a couple of the other ladies at the facility about him and they both said he was quite nice and very conscientious.
Last week mother mentioned him again and I could tell she was trying to tell me about an early morning incident. This young man is the one who got her up and dressed that morning.
Now to back track, when mother broke her hip the first time, she had a rude awakening with male nurses at the hospital. Mother had been in good health and except for hospital visits to have my sister and me she had not been in the hospital until the first hip break. She was not used to this whole male nurse concept and would NOT let them do any personal care for her at all. This continued when she moved in to the assisted living. Jeff was a great nurse and mother liked him a lot, but she would not let him assist her in going to the bathroom or getting dressed. This went on for a few months and finally she accepted Jeff and allowed him to provide whatever assistance she needed. She and Jeff are great pals now! Thus, I thought she was over the “man thing.”
Back to my story, last week I rode up on the elevator with Charles so I took the opportunity to ask him about mother. I said “Charles, does my mom give you a hard time in the mornings?”
“Oh, yes, maam.” he answered. “She sure does sometimes, but it’s alright. I don’t pay any attention to it.”
“Well, I know she can be pretty grouchy in the morning. I am sorry if she is hateful or hard to deal with.” I said.
He laughed and said, “Oh yes, just this morning I said, “Miss Ruth, it’s time to get up” and she said “Oh go to Hell.” But later she was nice. Don’t worry about it. I don’t. ”
Then yesterday morning Mother refused her early morning meds. Those meds, given first thing each morning are crucial to her having a good day. In fact, they are given very early, so they will have time to kick in and have some effect by breakfast time.
Unfortunately, in the world of long-term care, at least here in the state where we live, residents do have the right to refuse their meds. It doesn’t matter whether they are deemed to be competent or not, if a resident refuses, the staff cannot force the issue. Ah, but the daughter can!
I was immersed in a project. It was late morning, but I was still in my night gown, working diligently on my computer. I needed to get the project DONE. I was hoping for no distractions that day. But then the phone rang. Mom’s private caregiver was calling. When she arrived she had noticed that Mother was having extreme difficulty moving, and was more confused than usual. Mother was visibly trembling and the caregiver alerted the nurse. The nurse informed her about Mother refusing her meds and she called me. I threw on some clothes and off to the assisted living I sped.
I strode in to Mother’s room, NOT a happy camper. I said, “You cannot refuse those morning meds. Those are the meds that help get you established for the day. They are very important. And you whine to me that you want to feel better, well you will feel WAY worse if you don’t take those pills.”
She frowned at me and denied that she had refused her meds. I told her I knew better and that she had better listen to me. She NEEDED those pills. Then she began talking and within the words that made little sense I heard something about “that man” and suddenly I realized it was probably Charles who was with her at early morning med time.
“Mother, did you refuse those pills because you don’t like Charles? Is that what this is about? I don’t care whether you like him or NOT, I don’t care if you don’t like it that he is a man, I don’t care if you don’t like it because he is Black, you need to take those pills. It is not at all about the person giving you the pills, it’s about the good those pills do for you!” I was darn angry!
Mother looked at me then and said quite clearly. “It’s not that I don’t like him, it’s that I don’t like your relationship. You know I don’t approve of such things. I never have. You know that.”
What? Are you kidding me?? A relationship??? With Charles??? Good grief! But now it all made sense – those comments about a date, about that man. She somehow thought I was having a “relationship” with Charles and she was correct. She would not ever have approved of such a thing.
After I recovered from the shock, after I assured mother I was not having a relationship with ANY MAN other than my husband, and after I again made it clear she was NOT to refuse those meds, I left the assisted living and called my sister to tell her the news. She laughed and laughed and laughed – said I had made her day. I’m so glad I could be helpful.