Dementia Journal, April 29, 2015 in Daydreaming on the Porch

Mom’s dementia is getting worse, and she is more frail than ever. I constantly worry about her falling even though someone always holds onto her when she goes anywhere in the house. Her short-term memory is practically non-existent, but she has times of clarity, and she remembers events of long ago, especially the many years she spent in New Orleans, the city where I was born and raised. My mother lived there 44 years until she moved to Charleston.

Unfortunately, she is starting to get confused about who my sister and I are at times. When my sister, who was recently here for a week from Seattle, left for home after a very pleasant visit, Mom was upset with me for not telling her that Julie was her daughter. “Did I act normal like a mother,” she asked with some anguish about what she may have appeared to be to my sister. This was quite disturbing to Julie and me because she has never said anything remotely like that before. She’s 91, and it’s been a very slow progression of the dementia she suffers from. But her essential self has not changed, there are no significant personality changes, and, in fact, she is sweeter than ever. She looks at me and knows who I am. She has the most beautiful smile. She always has. It radiates love. I am envious of that. Physically, she is holding her own except for the increasing frailty, incontinence and tiredness. Of all the things that really wear me out and depress me, incontinence is the worse. It’s an ordeal spending 45 minutes cleaning up and tending to her in the bathroom or on the portable toilet by the bed. Cleaning the bed, the floor. Wringing clothes out to put in the washer. This is when you really feel you are losing it. “Get a grip. Slow down. Patience,” I tell myself. Somehow I make it through without getting too upset or angry or distraught with the whole of the human condition and aging in particular. During these difficult times, Mom is painfully aware of everything and her own condition. “I never thought I’d end up this way,” she will say. Or, “You think I like going through this?” She often sleeps much of the day. Recently, one of the caregivers had to actually feed her breakfast because she kept falling asleep at the table. That also was a first. Not a good sign. What cheers us up are the bouquets of cut flowers I keep all over the den. Such beauty especially when sunlight illuminates them.

My life continues to revolve around caregiving and work and getting out to the nearby parks and gardens for short visits, which are absolutely vital breaks for the sake of my mental health and well-being. Work offers me the longest period of respite, but I’m often thinking of her and wondering if she’s doing okay. We have five excellent caregivers, but I can’t help worrying. When I went to Magnolia Gardens this past Sunday for an hour, a blissful walk surrounded by natural beauty was pure balm for the soul. Stress melted away. I can hardly imagine not being near that place, or, not being able to visit, even when I retire. It’s become harder at times to even imagine leaving Charleston, even if I could, looking up the road a bit.

I feel thankful for a good energy level and the ability to function well on fewer than five hours of sleep. This is a blessing on those frequent nights when I am up with Mom at 2, 3 or 4 or 5 in the morning.

Needless to say, I long for it all to be over with, but when it is, and I am “free” to pursue life as I want, I worry that I will be sucked into a void so immense it would be a terrible struggle to get out of it. I’ve suffered from depression most of my life. Will I be strong enough to stave it off when Mom has passed away and the major part of my reason for being is gone? What will life be like in that new world of possibilities and opportunities, if and when I rise above the sadness and grief which I fear will go on and on. Will I be content to believe she is in Heaven and a better place than his world – this literal and figurative “veil of tears” that is also, paradoxically, a place of such unimaginable beauty and love? Where will my happiness come from? I certainly feel that’s an alien experience for me now as I so rarely am, if ever, “happy.”

I recently turned 64. I’m thinking about that Beatles song. I’m thinking more and more about retirement and Medicare and Social Security. I printed something off the Internet about applying for Medicare in another nine months. Or, do I wait since I still plan to be working? Or, do I just go ahead and make that momentous decision to retire at 65? How long can I continue to keep going into the work, continuing the routines of the past 20 years? When I no longer have a job, what kind of wrenching adjustment will that require? It all sort of seems surreal and far off at the moment because I seem to exist in a time warp. I see the gray hair, the skin on my hands and arms wrinkling a bit more, and I know I am a certain age, 64, but I don’t comprehend that age or feel that “old” at all. I feel timeless, honestly, even though I keenly feel the passage of time, the cumulative stacking up of years and the countdown of the relatively few that are left me now. Each Spring’s stunning beauty with magnificent azaleas and flowers is also rather bittersweet because I wonder how many more I will get to enjoy. And Spring is the time I feel most alive. Paradoxes, paradoxes. I can’t seem to help revisiting the past more frequently and compulsively (with the aid of the Internet, Google maps, etc.) Since my social life is virtually nil, and I have no immediate family, or close friends to talk about all this with, I tend to return to the past for some answers, some closure, some sense that I was happier, that life was better than now. In many ways it was, but it many others it was much worse. Unimaginable now are the trials I have been through. Therefore, in the past I seek answers to the question, “Why am I the way I am?’ If I am going to experience happiness now, those fleeting moments of grace, it will be when I am alone at the gardens or walking a trail at the park on a summer afternoon with a cool breeze blowing, enjoying the woods, savoring the sounds of the birds, the winds in the trees. Bliss. This parting sense of happiness and peace was felt deeply and pervasively a week ago during a visit to the wondrous swamp and tall-tree cathedral of Beidler Forest in Four Holes Swamp, an hour from Charleston. I’ve gone there for many years. The water was high under the boardwalk, and as I gazed into the gently moving water, the stillness was vast and deep, the outside world far away. I loved it, but it didn’t last long. Long enough, however, to get a taste of what true joy for me is like. Nature heals and saves me.

Since I am a family of one, I depend on myself so much more than I would if circumstances had been different. I don’t foresee this condition changing, but it could. Nothing is totally out of the realm of possibility, although the odds have dwindled. That scares me when I really think about it. Will there ever be someone to confide in, or dare I say it, share my life with, what’s left of it, that is. I can’t help thinking about being old and alone and frankly, it terrifies me, as much as anything this day and age can shock me. But why? If God is with me, who can be against me, even myself.

Many, many questions. They are really numerous interior monologs as much as questions, and this goes on all during the day now, at work and at home. How do I achieve peace of mind when I have so much going on that fosters anxiety and worry, the kind that never really goes away? More and more mornings now I simply don’t want to get out of bed. I am doing all I know how to help my mother and take care of her every need. But am I doing enough to help myself? Sometimes I just wallow in self pity.

I do believe I was destined for this caregiver role. It is a privilege even as it is the most exhausting burden one will ever face. I can’t imagine doing anything else. Sometimes I think I am doing penance for running away from jobs and fleeing responsibilities long ago in my past. Letting people down, myself especially.

I love my mother deeply. This current life will change and I can only hope I am ready for that change. I’m ready to resume the solitary life I gave up when I became a caregiver, if, in fact, I ever gave it up in the first place. Solitude is an interior state of being. I’ve tried for years to reach out to people, with varying degrees of success. Although I have come to terms with myself more or less, I still have a ways to go. I’ve wasted a lot of time on the Internet. I regret it, but I also made good friends and some very special and dear ones. But I never hear from them, and they are long distances away with family, friends, spouses, partners and hopefully rich and fulfilling lives, and I am here by myself. Alone with my thoughts.

Last updated May 09, 2022