Dementia Journal -- August 8, 2018 in Daydreaming on the Porch

One of the garden statues Mom brought here from her garden in New Orleans, 23 years ago.

“I feel like I’m in a Heavenly area and I’m taking you with me.”

“God, will you please take care of me and let me be normal.”

“I’m thanking God that my memory is coming back and that I’ll be normal again.”

Mom is entering a new stage in her ongoing progression with dementia and it’s causing me both concern and consternation. And yet, despite the terrible nature of this disease I see signs of hope and lucidity in her pronouncements each evening as we sit on the sofa after the last home health aide has left. I feel definitely like I’m entering uncharted waters with her. Her personality and mood seem to have stabilzed, and now she is noticeably preparing for the end. She has for some time but it is just more evident now than before. She’ll ask me if she’s a good Christian and if she’s been forgiven. Her faith is very strong, and I’ve learneda a lot from it.

“I feel like I’m in a heavenly area and I’m taking you with me,” she told me the other night. And a couple of evenings before that, “Are we in Heaven?” (When I told someone about this I said I must be doing something right!)

She’ll often say she’s dying when she feels any strange mental anxiety or even physical symptom of “something.” This is what I’m surmising, anyway. I know there’s nothing
physiologically wrong, as far as I can tell based on her vitals and blood sugar readings that day. But there’s something going on that I can’t possibly be aware of. Whereas you and I, if we are not afflicted by severe memory impairment, might try to intellectualize or otherwise articulate our deepest, strongest thoughts and emotions when we’re in a very pensive or philosophical state of mind, Mom does this same thing in her own way and despite the fog of dementia.

How do I respond to these questions? Unfortunately they are repeated so often that I have become a bit numb, if you will (as a coping mechanism). “Am living?” “Yes, Mom.” “Am I dying?” “No.” Where is B__? (The sister she was closest to). “In Heaven with R__ and F__ (her older sisters) and your mama and daddy.”

A few hours ago, she woke up and I heard her on the monitor calling out the names of her sisters, one by one. Then, “Mama, Daddy!” This was about 1:30 in the morning and as usual I was awake and lying in bed reading, thinkinking and trying to savor the only real peace I have during the day when I’m not as concerned about Mom’s state of mind or physical condition as when she with one of the Caregiver/aides. I try to relax upstairs but I’m always on guard or alert to any potential problems or mood changes. Most of the time everything’s fine, but when something goes awry…whoa, I’m needed downstairs in a hurry. The aides know Mom pretty well by now and generally they can handle most situations. However, this doesn’t lesson the low level of anxiety I always feel, like decor perhaps for brief moments when I’m driving out to the park for a walk. Only then do I get a small taste of what freedom is like.

Anyway, getting back to what I was saying, as I heard her talking via the monitor, I kept hoping it was just a brief waking moment and she’d get back to sleep. But it persisted. “Where am I?” “Whose home is this?” “Where is B__ sleeping?” Finally, I had to go downstairs and calm her down, rub her hands and reassure her that I was here and there was nothing to worry about. “Who are you?” She asked. “I’m your son, F__.” I had to go through several repetitions of this before quietly exiting her bedroom and going back upstairs. Quiet again. Most nights she sleeps straight through, thankfully, but tonight was an exception.

As I said earlier she has been more lucid lately and I’m not sure why this is happening in contrast to the more common confusion and questions that often make little sense. But lately I’ve been astonished by statements such as this last night as I was trying to write an email: “Do you ever feel as you get older that your memory is not as good as it once was?” I was floored. This set me to thinking that underneath all the memory loss and ceaseless flow of questions there are hidden wells of understanding about her condition. Somehow she knows.

Last night was not good, however. She became extremely anxious and agitated about 8:30. This is what I texted my brother and sister: “Mom’s hyper and constantly beseeching God to help her. I gave an Ativan. She says she can’t take it anymore. She keeps saying she’s dying and can’t take much more of this life. She’s asking God to comfort her. I feel completely helpless and useless. Mom says 23 years here is enough. She’s ready to go.”

Another moment of lucidity tonight: “Why didn’t God answer my prayers?” My reply: “Mom, God answers our prayers, maybe just not now or when we expect them to be answered. But He hears us.”

When I get to the point where I want to scream after 2-3 hours of ceaseless questions and talking, I realize Mom lives only in the present. She has no memory of what she just said. This is a powerful lesson to me who so often seeks to dwell in the past, thinking things were so much better then. In many ways they are. But now I’m making progress in my mental, emotional and spiritual lives in ways I never could have otherwise if I weren’t caring for Mom 24/7, seven days a week.

When I finally got up in the morning about 10:30, Mom was sleeping soundly. I went through the elaborate process of fixing myself a good breakfast, glancing at the paper, having my coffee and gathering myself together before I’m ready to get Mom up. I might find myself succumbing to the awful and strange headlines of the day: horrific wildfires in California; unending wars and conflicts; tariffs; 90 degrees temps at the Arctic Circle with both people and reindeer seeking relief by the water’s edge; drought and heat waves in England and Scandinavia; the continuing, daily, waking nightmare of the the toxic and bizarre news out of our nation’s capital; the human-caused possible end of our civilization on Earth due to global warming and climate change. And on and on. It’s crazy and depressing. I read too much. But just as soon as these unbelievable and bizarre thoughts and ideas start to sink in, I’m caught up in a flurry of activity getting Mom’s vitals; helping her use the bathroom; giving her a daily shot of insulin; getting her up with great effort by myself, dressed and into the transport chair for the trip to the den where I go about getting her breakfast, giving her her meds and hoping she doesn’t have a choking spell swallowing the larger pills; fixing her oatmeal and egg and toast (the one meal of the day when she doesn’t exclusively eat baby food). There are more and and more endless little things to be done for her. Soon I’ve forgotten the bad news. I realize again I’m not running from anything as I did in the past. Mom is feeling better (“Am I okay?”) and I feel a vast and satisfying sense of accomplishment.

Hope then is the daily quest to keep on keeping on, realizing there is purpose in suffering despite the fact that a loved one is slowly, inexorably, disappearing. I, too, am living in the moment. Daily moments of slow grief give way to new beginnings, each and every day.

When Mom holds my hand to her face and says, “I love you,” I know I can keep going. For now, anyway. Love conquers all.

Last updated November 22, 2018