You Are Always On My Mind
Everyday without fail, I talk with my loved ones with Alzheimer’s Disease and Dementia. Most days, I am able to live in their reality, assure them that I am only a phone call away and talk about what interests them. I can veer the conversation towards happy thoughts and keep them peaceful, even when I’m not at peace. I can make sure that they are getting the best care possible by keeping in constant touch with their caregivers and going to see them every month so that I can spend physical time with them to really ‘see’ how they are doing because it’s hard when I’m so faraway from where they currently reside.
They are always on my mind, but especially when there’s trouble brewing, like when one of them has a cold, cough and are sick, or when the other one’s sundowners is acting up. It’s a vicious cycle to get one of them to bed every night and we’ve yet to find a solution to making it easier for anyone. My Aunt’s dementia revs up at night especially and I’ve gotten the 9pm phone calls asking for help in talking with her. As a strong-minded woman, she’s only gotten more steadfast in her beliefs that nobody puts her to bed but herself, and only when she’s good and ready (but…she’s never ready to go to bed any night of the week). That’s the problem.
Dementia is sneaky in the way it works on the brain and the personality of the person with it. It robs them of clear thinking and exacerbates the strong-willed portion which in turn makes it harder to help the patient to understand what is going on. Anger ensues as the dementia takes hold more and more because the patient gets frustrated by their own thoughts and brain because their thinking gets muddled. It truly breaks my heart to experience this as a relative, let alone to know that things don’t get better with dementia, they simply slide deeper into worse, plateau for a bit of a reprieve and begin the descent again in time.
I guess I’m feeling sad and lonely today because I’m feeling the losses more acutely these days. I feel for my loved ones with the disease as it’s frightening for them to have a ‘crazy head’ and not remember the simplest things like what they had for breakfast or where they live now. Sure they can carry on a decent phone conversation for a bit and many times can focus well. But there are times when their confusion breaks my heart in ways I never knew it could break. I know what their losses are, but much of the time, they don’t realize what they don’t remember…but I can never forget that they don’t remember and it saddens me. Sometimes the loss cuts me deeply to my core and I hang on with all my might to the good of the day, to the gratitude that they know who I am and say they love me and hear me say it back. Because I know, that one day it can happen that they don’t know me anymore and then the grief will begin in earnest for me, for there won’t be any going back in time, except in my memory.
If you’ve had a loved one with this mind-altering disease, then you probably understand the sadness I’m feeling today. It’s awful to feel so helpless and to watch loved ones’ minds slip away. It’s hard to be the strong one, to manipulate conversations to happy thoughts and to never be able to share that I’m not fine sometimes. With them, I am fine all the time, all is well, I tell jokes, make them giggle and I repeat that I love them over and over until I can see them in person next. I fix whatever needs to be done to make them more comfortable. I check up on them with the nurses and I make life easy for them as best as I can. I do it all with love, but sometimes I wish I could simply be taken care of myself as I take care of them.