Dementia Journal, December 13-14, 2015 and thoughts on aging in Daydreaming on the Porch

It’s a strange thing getting older — older as in nearing Social Security retirement age of 66 and Medicare eligibility. You start getting a lot of things in the mail about Medicare supplemental insurance policies. It seems that a lot of companies and marketers know my birthday. That’s scary in and of itself, but what’s disconcerting and anxiety-provoking is the simple fact of what this conveys: the chronological determinism of age, the relentless march of time, the shocking reality that you haven’t got that much of it left. And of all things, to get daily reminders in the mail.

In my 50s, I could have just as well have been in my 30s or 40s. I rarely thought about aging in the existential, end-period-of life sense. The “autumn of life.” No way. I was preoccupied with all my Internet obsessions in the New Digital Age starting around 1995. Internet surfing, chatting, instant messaging, email correspondence. Most of my free hours. Much of it was positive and a boost to my moods and well-being. In touch with people as never before. It was too much, though. Now I just email and read articles online, none of the other stuff. No Facebook or Twitter. But this transformative period in our culture and technology, which now comprises every facet of our lives from shopping, banking, travel planning, writing, reading, artistic expression, news, books and articles — almost everything is done differently, or at least can be — if one allows the technology to do so. Letters written by hand — a dying art, almost extinct. Long, in-person conversations or hours spent reading books — fading in the light of instant online communication via a multitude of new media.

Ten years ago my mother was still generally independent, although I was often at the house and did a lot for her even then. She was cooking for herself, walking in the neighborhood, shopping for groceries (it all seems unimaginable now considering the state of her near total-dependence on me and the caregivers). The vise grip of dementia and old age (she just turned 92) inexorably tighten. I’m at work now on this weekend of Sunday work and just talked to the caregiver staying with her who told me she’s been asking questions over and over again about who her children are and where they live. She does this in my presence, too. I give her the same answers over and over. It’s like it’s not that shocking or even as depressing as it once might have been. I’m getting more and more used to it, accepting of it simply because I have to. I have no choice.

Many of my co-workers have retired or are retiring — people I’ve known for many years. Others are thinking of leaving or want to leave and find another job, anywhere else. Me? I’m staying, at least for the foreseeable future. Work is the chief means of escape from my all-consuming life as a caregiver. At home, I’m always on call. Mom needs everything done for her. I can rarely relax on the sofa in the living room for more than a few minutes without her calling me from where she sits watching an English gardens DVD over and over in the den. Actually and mercifully, that beautiful and calming DVD series is a lifesaver. We mostly can’t tolerate the regular fare of TV. I never watch it anyway. She calls me because she’s anxious or fearful about something and it needs immediate attention. If I don’t rush back into the den, she starts getting up by herself, which of course means she could fall, so I have to redouble my efforts of placate her, to try to calm those fears, even as my anxiety and frustration levels are shooting up out of the roof. So, work lets me be away from it all, at least in a physical sense, on a regular, daily basis. Work is the answer for now. And I still get a lot of satisfaction out of doing my job and I have good friends and people I like at work. Some of them I have known going on 20 years now. We are like family, in a way. It’s a familiar and comforting place to be compared to home oftentimes.

“Thank you for all you do for me. I couldn’t live here without out you.” How true that is. Mom says this quite often. As she gets frailer and older, I also hug and gently kiss her more often. I need to. “you’re so good to me,” she’ll say. (Well, when I’m not impatient or cranky) I’m afraid I could lose her at any time, although her health is stable and she could live for years longer, in what state, though I shudder to think or have no idea. Where does it all end? Her overall health is fairly stable as long as we keep the diabetes and atrial fibrillation under control. That’s something I rarely think about because it’s potentially so frightening. Her cognitive abilities and memory keep deteriorating, but very slowly as they’ve been doing for many years now. I’ve seen and noticed the whole process. I see a different person than the more vibrant and intelligent woman of only ten years ago. Each day is capable of producing some little shock or surprise.

December 14

One of the things anxiety about the future produces is a sense that the past was better, more hopeful, less stressful than the present with its periods for me of intense unease and nervousness. I have to take a sedative from time to time, sometimes daily. It’s that severe, especially first thing in the morning when it all hits me once agin. Consequently, I often get on the computer with Google maps and Street View and travel down streets I once knew so well from my log-ago past, or print out pictures of apartments or houses I once lived in, 20, 30 or 40 years ago, even back to my childhood homes and neighborhood. Technology allows me to revisit the past in this somewhat crude but effective and memory-jolting way. I seem to feel compelled to do this because what I see and experience in this way represents and takes me back to everything that is not the present. For example, when I was forty years old, living in the Seattle area and working a dead-end temporary job, I at least still had many years ahead of me in my working life. I didn’t own a home or have the worries of home ownership as now, had relatively few books and possessions compared to now when I am overwhelmed with at least a couple of thousand books, as well as papers, memorabilia and clutter, every bit of it signifying some part of the past that I look back on wistfully, nostalgically now. This is ironic considering the periods of depression I suffered through in the past as well as being constantly uprooted and seeking employment. There once was a time, believe it or not, when I had just a few boxes of books and belongings on hand to stuff in a car for a drive across the country from New Orleans to Seattle in the fall of 1991. All through the 1980s, I made similar trips and had similar adventures. Driving hundreds of miles a day and seeing countless new sights was liberating. I was unemployed but liberated. Difficult to explain.

I think back to former jobs, apartments and close friends, which, hard to believe I actually had at one time — all pretty much in the past now except for a few that I still manage to keep up with. Those are the true friends who last a lifetime. As bad as things were at times in the past, I want to emphasize how much I seem to see my youth, young adulthood, and even middle age suffused in the golden light of nostalgia, a time of possibilities when the future still seemed endless and bright, with many roads still to travel — literally and figuratively — in the the years to come.

Now, my life is circumscribed by the major roles of caregiving and work. I’ve been at my present job for 20-plus years. I hate to even think of retiring soon because the job gives me a sense of identity, as much as or more than my other, more emotionally draining job as caregiver.

Very late at night is the only time I can really have any true peace of mind or time to myself, it seems, apart from my brief forays to the parks and gardens I love so much. I’m talking about 2, 3, or 4 in the morning (or 5:45 am as I am typing this now from pages I have written by hand). And during the week, I have to get up at 8 am. I have no idea what a sunrise is like now. I can’t get out and walk except when a caregiver is with Mom. And, it makes me anxious and sad to see her asking who her children are and where they live. She’s happy and sweet most of the time except when she starts to focus on some of her fears and worries. Then her personality seems to change a bit and she gets critical and has harsh words for people, including family members. But more typically, she talks about her flowers and how much she loves her home. She loves the porcelains and antiques she collected over many years. She enjoys the sunlight in the den and the blue skies outside the floor-to-ceiling windows. I always have vases of cut flowers for her. That’s a must.

The times that are the hardest are when she can’t control her bodily functions. Depending on how stressed and anxious I am that day, I can really lose my patience and temper and I say things I regret. It’s very hard to control this. Thankfully, this morning with a major cleanup ahead of me, I managed to keep calm and do all that was necessary. I shifted into auto-pilot. I was methodical and efficient, despite the hugely unpleasant nature of what I had to do. I am so thankful I kept cool

Needless to say, it’s exceedingly difficult to continually be the good, patient, forbearing son and primary caregiver. The other night was awful with a sinking resignation and feeling of being trapped indefinitely in this situation. At times, and I can’t help but say it, everything I have to deal with makes me hate my personal life and what it’s like living through this present unending time of vigilance, caregiving and personal sense of obligation. It’s nothing my mother has done. It’s not her fault. She can’t help constantly asking the same things over and over until I feel like screaming. In response, if I am trying to rest on the sofa in the living room, 20-30 feet from where she is sitting, I end up yelling back my responses to her questions (which MUST be answered), full well knowing her hearing is also deteriorating and she’s only hearing some, if any, of what I’m saying. At some point during this futile charade, I drag myself off the sofa and head back to the den to sit next other and continue answering the same questions and desperately trying to be patient. Finally, the questions might stop for a while when I give her some magazines to look at. One of the caregivers often sits beside her and reads to her. I don’t have quite that level of patience and that caregiver is only here a few hours. I need to try to do this, though. She can still read but her attention wanders even more quickly than mine.

On a Wednesday, or a Saturday or Sunday afternoon,I can drive way out in the country and absorb the stillness of Beidler Forest in Four Holes Swamp and briefly have a sense of peace and equanimity restored. Or I can walk at Charles Towne Landing or Magnolia Gardens, nearer where I live. A feeling of calm comes over me. Anxiety melts away for a blissful, short interlude. How I treasure those brief moments to myself that aren’t confined to the middle of the night. I just keep on, keeping on, and fortunately, I have a lot of help and support.