July 3, 2011: Emma parks her walker in the usual spot for breakfast, in the dining room to the left of the credenza behind her dining chair at the head of the table, and instead of turning to her chair, overshoots the dining table and heads for the corner. After much coaxing, I redirect her. On her way back, grasping the credenza, she grabs the candelabra and then the candlestick holders. At least she doesn’t bean me with one. She’s so afraid she’ll fall, she grabs onto everything in reach – bed quilts, candelabra, doorjambs…. Kind of like building your house on sand – nothing that will hold.
“No. No! NO!” I’m saying, trying to get her to put down the candelabra and hold onto the credenza until she makes it back to her chair. I look up. The windows are open. Oh. What will my next-door neighbors 25 feet away think?
Emma is hard of hearing and belligerent. She thinks she knows best. And, true, sometimes she does, but she has reached the dementia stage of aphasia: she can’t communicate her reasons: I learn the reason later. But, most of the time, she only thinks she knows best – and she tells me about it, vis-à-vis, “I’ll have you fired!” One could only hope. “Keep your fingers off me.” “You leave my walker alone!” She can talk when she wants to. Thank goodness that kind of talk doesn’t happen often. Although, now, she’s become combative at times. I’ve learned to stand back so when she swings, she won’t hit me. She sits in her chair next to the bed and grasps her bedpost with that firm grip only women of her generation can (accustomed to kneading dough, flattening it out with a rolling pin, rubbing laundry against a washboard, wielding a laundry iron made of iron, scrubbing the kitchen floor on hands and knees with a scrub brush, to name a few routine activities), so that her healthcare aides and I cannot get her arm into or out of her shirt. I try to pry her hand off the post and she swings at me. She is kinder to the aides.
She shreds her napkins at each meal, a phenomenon common to dementia patients, I’ve been told. At least she eats. I’ve been told that many dementia patients are more combative than Emma and ultimately, they stop eating as their bodies shut down. In the end that is what happened to Emma.
However, around this time of the candelabra incident, a nurse told me not to force her to eat. Don’t worry about it, she told me kindly; she’ll eat what she needs. She doesn’t need to eat any more than that. And, in the last few months of Emma’s life, when she ate very little, her hospice doctor told me that it’s the body’s natural protection not to eat much when it is shutting down, as Emma’s was; that if she ate too much, the body would be overwhelmed.
My Dear Samantha,
I keep on relating to your posts because I went through similar things with my mother. But my mother wasn’t aggressive. She didn’t know who I was, but when I started singing and asked her who I was she would say, you’re my beautiful daughter. But in the mornings when she awoke and I went into her bedroom and said good morning, she would look at me and say good morning as if she were speaking to a stranger. When I think of it now, she was very kind. She loved when I read or sang to her, and when I was there I did it often.
Thank you for sharing this. I admire how you loved your mother through until the end, and it was time for you to say goodbye.
Thank you, Patricia. I think your mother must have been a kind and beautiful person to have raised such a kind and beautiful daughter. How special that you wore able to share with your mother you gifts of singing and reading.
And, having the opportunity to love and be with my mother through to the end, all I thought and keep thinking is “what if it were me?”
If we don’t hang onto our sense of humour for dear life, we’re doomed as caregivers. My sister and I are the primary caregivers for our aunt, who had no children, and we’re so grateful to have each other as witnesses to the incremental losses, but also to the darkly humourous moments. I laughed out loud when I came to the line in your post, “‘I’ll have you fired!’ One could only hope.” Oh, yes. Yes, yes, yes.
Our aunt can be belligerent too, but for the most part right now she’s weepy and anxious. There’s no easy part of this disease.
Another eloquent, powerful–and darned funny–post.
Kern — I’m sorry to be so late in replying to your comment. I only just now saw it. I am so glad you caught the “hanging onto our sense of humor” in this post. It is wonderful that you and your sister are caring for your aunt, so giving of you, and that you two have each other as witnesses.
As you say, the ONLY way through this is to laugh — and, you know, I feel comfortable writing about my mother’s antics because had she been aware, she would have laughed, too. She had a great sense of humor, that English sense of humor, and could laugh at herself.
I am glad I made you laugh — part of my purpose in sharing my experiences with other caregivers.
I wish you and your sister — and your aunt — well. I do enjoy your witty writing. I think you’re going to write some great stories about your own experiences with this disease. Thanks.
It is so sad listening to these occurrences. Emma could easily have hurt herself or you in grabbing for these obstacles. My heart truly goes out to you, because as I mentioned I saw my grandmother and my aunt go this way. It is PAINFUL. I’m sorry.
Well, this one was funny, Gwynn. –Even sort of in the midst of it, albeit I was trying to keep her from wobbling and falling, while keeping my voice down so she could still hear me, hard of hearing as she was, and so my neighbors couldn’t.
Of course I wasn’t laughing in the midst of the event, but I did soon after.
This was gripping Samantha. Tragic, full of pathos. Growling at the gate is a thought that comes to mind.
It sounds like a dance, many times not merry at al … we want our loved ones to eat nourishing food, but as you imply the body knows best. And the kind nurse.
Thank you Samantha … a poignant post.
Growling at the Gate is coming up, Susan. But this episode I had to laugh about after it happened.
It is a kind of a dance, now that you mention it. Mother loved to dance, as do I.
Mother always made me eat all the food on my plate — I still do, not good for weight reduction — so naturally I thought she should eat all the food on HER plate, because, anyway, I was giving her smaller and smaller portions. 🙂
If this wasn’t such a serious subject, I’d be laughing my behind off at your description of this scene. I thought, for a moment, I was watching a scene from “Victor/Victoria”.
Please forgive me! I see comedy too much for my own good. My mother took care of three family members with dementia and I helped with two and know it’s not a laughing matter. You are such a wonderful writer that my humorous side took over for the first few sentences. It didn’t take long for me to see the seriousness of the situation and relate it to the times to the heart stopped in fear, that our loved one(s) would be seriously injured. Great job Carol!!!
It’s meant to be funny, Marsha. Glad you got it. It wasn’t funny at the time, though. Even my mother, had she regained her senses, would have laughed. That’s why I can write these serious yet funny later episodes about her. She would have laughed, too.
The only way I got through these episodes was to be able to laugh about them later.
“Victor/Victoria” — I think Robert said that, too,
I find it hard to believe we are up to “G”. I have been so busy with the spring season upon me I have not been able to keep up with my “ABC’s”. Hopefully I can catch up.
Love the title of this post. I wonder how you would look with a crown of candleabra.
Well, that was just a candlestick holder, R. But, you know, it was an alphabet of events, one after another.
Spring season. Ah. Budding signs of growth.