Chocolates, plush animals, and romantic cards. Those are the staples of Valentine’s Day. But want to see real love in action? Watch a care partner for someone with dementia.
(Apologies to Saint Paul; I used his First Letter to the Corinthians, verses 4-13, as the platform for this post).
Love really tries to be patient. Especially when I try to figure out why a certain behavior is happening. Love is kind; I play to his or her strengths instead of dwelling on the not-so-great parts.
Love gently provides the same answer to the same question asked 6 times in the last 5 minutes. Love sweetly listens to the same stories over and over again. Love is entering the person with dementia’s reality to understand the behaviors.
Love is creative as I find meaningful activities that respect his or her preferences.
Love is laughing at oneself and seeing the humor in the situation. Love is understanding that the person with dementia is not doing things to be disagreeable; the person with dementia is trying to make sense out of a sometimes scary and nonsensical world with mixed-up memories.
Love is becoming the memory. Love is helping to dress and bathe. Love is feeling thrilled that he put the left shoe on the left foot today. Love is feeling joy that she knows who I am today. Love is feeling triumphant because I figured out how to get him into the shower without a fight today. Love can be boastful: “Yay!! Look what WE did!!”
Love never fails, although I feel like I do at times. But where there are yucky days, they will pass. Where there are challenges, they will fade. For we know in part how to handle situations because we are learning, and every day brings more ideas and abilities than the one prior. Before I became a care partner, I talked, thought, and reasoned differently. When I became a care partner, I began to see the world through my loved one’s eyes.
Faith, hope, and love remain. My faith gives me the strength to do some pretty difficult things. My hope helps me to persevere, because I am optimistic that this journey will continue to yield positive and surprising lessons. But it is my love for my care partner, the greatest of the three, that make it all complete.
Happy Valentine’s Day to the greatest examples of love: the care partners for persons with dementia.
Hugs,
Rita
Categories: Alzheimer's Disease Care Partners Caregiving
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.
And where can this love come from? Today my love is incomplete.
This is so beautiful. It was a rough day today and I needed to read this to remember why I am here with my husband. Thank you.
You are welcome!
You are welcome! Rough days do not mean “failure!!!!” The learning curve does have bumps in it. Thank yo for taking the time to leave a comment!
Not sure what you mean. Struggling with caregiving does not mean one’s love is incomplete—if I’m interpreting your comment correctly.
“Incomplete” –meaning I am not growing in love and demonstrating it in ways I think truly show love.
I rarely feel that I am ” learning, and every day brings more ideas and abilities than the one prior.” My patience, understanding, and empathy are waning, and I think it’s these important qualities that must be present to demonstrate love.
As my mom becomes so confused that she cannot cooperate (both mentally and physically) in my attempts to care for her, I see myself becoming more impatient and frustrated.
And, I’m sure that I am feeling these things acutely right now because she is losing the ability to control where she goes to the bathroom, and I’m always on “high alert” (day and night) to keep her from making messes.
If anyone has tips on how to transition a loved one to using incontinence products, I’d appreciate it. She is so confused that she tries to rip them off and squats on the side of her bed to relieve herself.
Thank you for your wonderful post. Despite my words that say otherwise, I am encouraged to move forward one more day toward love.
Without knowing your mom, it’s difficult for me to offer tailored strategies. Generally speaking, many persons living with dementia lose their “maps” and cannot locate the toilet. It is difficult for them to use incontinent products–shame around soiling oneself becomes deeply ingrained during potty training. Procedural memories around bladder and bowel control interfere with the use of incontinent products–which is why your mom is peeing on the side of the bed. What would happen if you had a commode by her bed? At least it looks like a toilet, the seat at least.
I am going to do a FB live (Make Dementia Your B on Facebook) Monday, February 10 at 6:30 pm central time. I can lead off with your caring challenge, if you would like. I will post the event later tonight (after I’m done in the clinic).
Thank you. Yes, it may be helpful to me and others to discuss this issue on your Feb. 10 FB Live.
I was planning to get a bedside commode, but I doubt that she’ll use it on her own in the middle of the night. I’ve been relying on an audio baby monitor thus far, and even though it’s highly sensitive to noises in her room, my mom is quite “stealth” and several times I haven’t heard her standing at her bedside. Those were the times she relieved herself on the bed. 🙁
So now I’m thinking I should get some sort of motion-activated alarm so I know when she gets out of bed. Unfortunately I haven’t read consistently good reviews for many of these “alarm” products. And an important factor for me is that I don’t want the rest of the family to be awakened by loud alarms in the middle of the night.
I’m losing sleep, a good attitude, and motivation to remain a loving and patient caregiver. Thanks for reading.
This is beautiful, Rita. Thank you
You are welcome!
Rita, this is beautiful. Even though I had tried to tell my mother over and over about my step father not “fitting any new information in his box” (I learned this from talking and listening to you in the halls there in Neurology), it took an office visit with you and YOU telling my mother this for her to understand. She has more patience with him now, although it can still be overwhelming for her. You definitely have found your calling in Life! We have an appointment with you in March. We will see you then. Thanks for everything you do! Melinda Hicks
Thank you so much for your kind feedback!! I’m grateful that I have this quirky gift and can share it in a meaningful way. Blessings to you, your mom, and stepfather!! Looking forward to seeing all of you in March!