Dementia Journal, Dec. 17, 2016 in Daydreaming on the Porch

“… Family caregiving is a profound and deeply personal experience. It touches on our mortality and our vulnerability, who we are as humans, as sons and daughters, husbands, wives, fathers and mothers. It asks us to find meaning in loss and satisfaction in what many would see as drudgery or endless self-sacrifice. Fundamentally, how we think about the role of caregiving plays a powerful part in whether we buckle under the strain of that position or derive a sense of purpose and fulfillment….”

From The Givers by Francine Russo, in Scientific American Mind, November-December, 2016

“In the midst of winter, I found there was, within me, an invincible summer.”

Albert Camus

“Are you my son?” I’m hearing this question more and more lately. I don’t really understand why Mom asks me that because she seems to know perfectly well who I am most of the time. As soon as I tell her I’m her first-born son and she scrutinizes my face some more, she relaxes and seems normal and knows who I am. I knew this stage in her dementia journey was coming, but still, it’s a shock each time I hear her ask that, although the impact, like anything else, is lessoned by repetition.

Another scary development, perhaps the scariest thing I’ve yet had to deal with, are the severe mood and personality shifts that have started in just the past few months, where she becomes angry, paranoid and accusatory. My mom, the sweetest person you’d want to know. She turns into someone else. “She’ll angrily say: “I’m not getting the proper help.” “I need better care.” “You don’t give a damn.” when I’m knocking myself out attending to her every request, demand or whim. And that’s before it escalates further into repetition, a fearful, angry, even tormented expression in her eyes with questions and endless demands to know this or that, or if I don’t immediately answer or I step out of the room, she yells, “Help! Help!” Then after what seems like an eternity, it’s over. The storm abates.

I hear this more lately, too: “Maybe I’ll get better care in a nursing home!” I roll my eyes. I have to bit my lip and hold back what this makes me to want to say. Oh, how tempted I am sometimes to just give in and place her in a facility. And then I shudder and can’t actually comprehend doing so, or seeing her left alone to the care, or lack of care, of strangers. Then a bit later I’m thinking, “Oh what an enormous relief it will be when caregiving no longer dominates my life, my job, my thoughts, my moods, my waking and sleeping hours.”

5 am the other morning I hear this on the baby monitor: “Mama, Daddy?” “Am I home?” “Somebody better come help me.” I get out of bed and head down the stairs for perhaps the third time that night.

“Where am I?” Mom will ask. “If I don’t get home there’s going to be a problem.” “Mom.” I reply, “ You’re home in Charleston now. You didn’t go anywhere. Home sweet home!” She relaxes. I start to readjust the pillow. Right as I’m about to go upstairs, she says, “I need to pee.” I expected to hear that. She has to get up to go to the bathroom (portable toilet beside her bed — I try not to say ‘potty’) However, I’m also pretty sure she’s gotten up for this during the middle of the night for as long as I can remember, probably her whole life. It’s the reason we got her four-legged walker in the first place about 8 years ago. If I’m lucky it’s just pee. Many times I’m cleaning up from a bowel movement gone awry at 4 am. That may take a half hour to 45 minutes, and I’m silently cursing (or sometimes not so silently). I can’t help it. I get furious as these mortal coils wrap more tightly around both of us.

Food has become a problem, or rather eating. We don’t know what to fix her because most everything now get chewed, then taken out of her mouth, and placed back on the plate. Little piles of chewed food accumulate. It’s maddening. She rarely has any appetite. The doctor a couple of years ago said to let her eat what she wants. I agree, except that she’s diabetic and has to eat. So we just started giving her soft baby food in the small jars and bottles that I never in my life purchased before. Sweet potatoes, summer vegetables, beef and gravy, chicken, spinach and peas, etc. It looks totally unappetizing, but for now, she seems to like it ok and cleans her plate, generally. The first time I bought the stuff in the grocery store, the young man scanning the items, said, “Gotta get that baby fed, eh?” At first I just nodded, then looked up and said, “No, it’s actually for an elderly parent.” I probably didn’t need to say that but I am so literal and exact sometimes. A 65-year-old with a baby to feed? I guess it happens more often than one would think.

When she has to chew her food it seems to take forever. I get impatient. “Please eat some more of this. Please eat some more of that.” She nods her head. “Okay.” Again, Mom’s the sweetest, most caring person you’d want to know. Except when she’s not. Right now it’s still relatively infrequent that she suddenly acquires that other nasty personality. But the other night she looked at her dinner of soft food and said, “How can you give me this slop?” Maybe she had a point. I don’t know. I just want her to eat. She had a brief diabetic low the other afternoon and that’s frightening. The caregiver called me at work about the symptoms. She was quick thinking and gave her orange juice followed by a cracker with peanut butter. The low rapidly passed. Scary.

I don’t want her to have to subsist on nutrition drinks like Ensure. Not yet, anyway. But for a number of months now, she’s had half a bottle of such drinks every night with supper just to make up for what she doesn’t eat from her plate.

All these things I worry about, not to mention her blood sugar reading, blood pressure and pulse, etc. which I have to get each morning. I tell myself I’ll really know if she needs to go to the emergency room or if I need to call the doctor. But will I? She doesn’t suffer in silence.

I hear this a lot, too, nowadays, “Why is God doing this to me? I don’t think I’m going to make it. I’m dying. I hope I make it. If it was morning, I’d tell you to take me to the emergency room.” “Mom, you don’t need to go to the emergency room. You’re going to be okay. You don’t want to be in the hospital, believe me.” Imagine the stress and silent anguish of hearing this fairly frequently. Such as every night.

On thing I can assure you of if you find yourself in my position some day. Don’t ever expect people to eagerly and sympathetically listen to your unbelievable sounding stories of caregiving drama, or day-to-day existence as a caregiver: your trials and tribulations, your daily, slow, relentless, constant need to grapple with this reality that you’re never free from, even if you’ve taken a long walk in the woods for a couple of hours Yes, you get blessed relief and you take your mind off things as you soak up the beauty of Nature and receive her healing balm. But reality keeps knocking.

It’s not that people don’t care about your hardships and struggles with caregiving. They just don’t want to hear about the third time you were up in the middle of the night changing adult, disposable underwear (Depends… I refuse to refer to them as adult diapers as some people do). They don’t want to hear how you listen to the same questions for two solid hours.

You get kind of numb. People are sympathetic, but what you’re going through is so far removed from their everyday reality that it’s literally incomprehensible. So you can just picture the hands covering the ears. Yet talk to someone who’s cared for a relative or family member with Alzheimer’s or another form of dementia and they’ll nod their head in total agreement and understanding. It happened to me the other day at work. I could see it in the eyes of the person I was talking to, the pained expression on her face as if she had just relived her whole caregiving experience in a flashback.

Lately, I’ve been fighting off persistent attacks of rather severe anxiety. The mornings are worst, but it hits me later in the day at work, too. This occurs when my constant awareness of my responsibilities for my mother’s care, not to mention all the other concerns about keeping our house and lives going day after day, sets off a cascade of emotions, not fierce or strong, but low-level and ominous, like rumbling dark clouds moving across the sky. Within an hour, an Ativan tablet (anti-anxiety benzodiazepine) will take the edge completely off the anxiety. A feeling of well-being and assurance, even confidence will comes over me. But what about the next day? It becomes a crutch. I’ve been dependent on benzos before. People who’ve been there know exactly what I am referring to. It’s like a form of alcoholism, minus many of the physical symptoms, and I function quite well overall. For now. But anxiety is a terrible, awful feeling which feeds incipient depression. It can be debilitating. To stave off that, the pill helps.

Depression’s another thing to fight off. Ive been there before. It’s caused in part by the endless need for vigilance and availability as a caregiver. There’s no escape from it. Everyone else appears free, unfettered, able to do anything they want, any time they want. My brother came over the other day and was laughing and having a great conversation with my cousin in New Orleans. I felt totally disconnected, cut off from that. All I could do was ask my brother to say hello to her.

But I fight it off. I have so many good books to read. My devices with which to explore the Internet and communicate with a few friends. The parks and garden paths to get away to for a blissful couple of hours while the caregivers are at home with mom. I try not to think about home at all. I enter the realm of Nature, my surest and most steadfast companion. The woods, trees, camellias and azaleas in bloom, the peaceful paths among these flowers (even in winter), the stillness, the sky, marsh and tidal creeks. All nourish and sustain my soul. I never fail to get rejuvenated. It happened the other day while on a visit to Magnolia Gardens. Even on a cloudy, overcast day, mild for December, however, it felt like paradise. Every familiar bend in the path, every view of the familiar landmarks, the soothing vistas over the Ashley River, the private nooks and crannies with benches to rest on and briefly meditate and relax. Thankful! Very thankful!

Then the next day, back in the bustling city, I was waiting at a stoplight to cross our busy main street on my way home from work for lunch, and I observed the busy stream of holiday shoppers on the sidewalk, anticipating Christmas and in a festive mood. On the one hand, I wanted to be gone from there, away from it all, and on the other hand, I wished I was in a mood to shop and engage in some holiday activity. I felt rather numb, lost in my thoughts. Depressed. It often happens to me at this time of year, regardless of whether there are specific reasons for feeling depressed.

Wondering how I manage it all, I told someone the other day, “It’s one day at a time.” Sometimes I wince at that cliche, but after saying it, I felt better, more in control of my life, more capable of dealing with things rather than worrying about what life holds in store the next hour, day or week hence.

Last updated December 20, 2016