It’s been 5 1/2 years since my mother passed away at end of January 2020 at age 96. She suffered from diabetes and the grievous effects of slowly advancing vascular dementia for the last 15 years of her life.
Before her health began deteriorating not long after she was first hospitalized to get her diabetes under control, she enjoyed to the fullest life in her new home in downtown Charleston, designed by my brother, an accomplished architect. She loved working in her garden, participating in activities at her church, and taking walks in Charleston’s historic district that she was surrounded by. She was often described as the epitome of a gracious Southern lady, and it was true. She loved people and entertaining them at her home when she could. Her father and his people were from Charleston, so she felt very much at home after moving in 1993 to the “city by the sea” from New Orleans where she and my father lived for 45 years. I grew up in that fabled city, but have called Charleston home since 1995. I’ve come to dearly love this city and its architecture, friendly people and abundant natural beauty. It’s the ideal place to explore through photography.
I lived on nearby James island within the Charleston city limits for 15 years until 2010 when I knew my former life of part-time care for mom had ended, and I moved into the family home to be her full-time caregiver. Shortly after, I hired home aides to assist me so that I could continue working full time until I retired in 2017.
It’s only been in the past few months that I have been able to go back and read some of the Dementia Journal entries I wrote, often in great detail, from 2010 to 2022. It is a deeply emotional experience to relive those days when my life was consumed by meeting all my mother’s needs after she could no longer do anything for herself. Looking back I feel immensely grateful and privileged that I had the health and stamina, mental and physical, to keep her in her home to the end. It was, despite the taxing ordeals that arose fairly frequently, the greatest accomplishment and good that I accomplished in my lifetime.
We had excellent home sides that stayed with us for years and became like family. We also had excellent doctors and a compassionate minister and member of our church family at the time. My mother was a devout Christian, and I learned so much about the powerful lifelong faith she had which remained until the end.
I am also forever grateful that I am a writer and had both the desire, need, and skills to keep up with my Dementia Journal, even if the entries were sporadic. I posted them online in hope others would not feel alone or isolated in doing the same difficult and emotionally exhausting job. The comments from readers over the years were always heartfelt and deeply supportive. The journal became my outlet to vent and release emotions and tensions. Although I didn’t write every day, far from it, what I did write over a dozen yesrs, tells the story fully in great detail. Without that journal, most of what I remember Mom experienced and went through over those last years would be lost, as the grieving and healing process require that one let go of the most painful memories. And so I’d never be able to recall those times in their all specificity and poignancy had I not written so much for myself, but also for anyone in my family or those outside the family who may, for whatever reason, happen upon these journal entries.
Since I had no spouse, partner or family of my own, I was able to give everything I had to the care of the person who brought me into the world and who loved me and my brother and sister more than anything in the world. “My children are God’s greatest gift to me,” she would often say.
I will always remember this brief moment clearly. About six months ago as I was in that state between sleep and wakefulness, dreaming and fully awake consciousness, I heard Mom call my name, quietly but distinctly and clearly. Softl,gently with a very slight hesitancy, as if making sure I was there. The sound and intonation were of complete and unconditional love that only a mother can have for her child. Through that gentle brief moment of hearing her voice, I felt her presence, as surely as anything I have ever felt deeply in my life.
This Dementia Journal entry was written on Aug. 12, 2012:
A rare day of relative peace and calm this Sunday in early August. Although I have been my mother’s caregiver for almost ten years now, ever since she developed severe diabetes and her dementia started to accelerate, the past few weeks have marked a tipping point, a sea change.
A week of hospitalization for heart problems, wildly fluctuating blood sugar levels, the need for additional units of insulin, plus dealing with the dementia, have made my life the last few weeks seem like that of a nurse or medical attendant rather than a son and caregiver. I have been stretched very thin. I’ve had to give her insulin whereas she always did that before, check her blood pressure on the telemedicine machine, live with a baby monitor on at night so that I can hear her calling in the night for assistance going to the bathroom, or if she should not be able to sleep, give her something for that. Her anxiety level is high.
She worries constantly and repeats things she has said over and over, often asking the same question four or five times in a row. It’s maddening. It breaks your heart. You don’t know what to do about it, for there’s really nothing much you can do about it.
This Sunday afternoon is the first time I have managed to have even a few moments to write with any real sense of clarity. Our overriding goal, with the assistance of home health nurse visits and two wonderful caregivers, is to keep her in her home where I have lived with her for the past two years. My siblings and I want to do everything, and I mean absolutely everything possible, for her to enjoy the familiar surroundings she cherishes: the porch with her favorite rocking chair; the side patio where she can sit and enjoy her plants, and her back garden with its small fountain and the plants and flowers she loves so much.
For years I have maintained a delicate equilibrium between my job, caregiver duties, and need to get out and do some things for myself, all this thanks to the help of the two caregivers I mentioned who are like family to us, Now, however, my mother needs someone with her 24 hours a day so I need extra help on nights and on weekends just to keep up my balancing act and sanity. If I can get out for just a couple of hours to Magnolia Gardens to take pictures, or walk for a hour or so around sunset at Colonial Lake, or visit Charles Towne Landing and soak in the peace and serenity of the live oaks and marshland, I will be okay, more or less. I’d like a lot more free time, but that’s not looking too posible right now.
This has been one of the most difficult, heart-wrenching and exhausting months of my life. I have been there with my mother when she faiinted and I almost called 911 before she came to. I live with the anxiety of her having a diabetic low and daily forgetting more frequently what has just been said or done. I try all I can to reassure her and encourage her.
I love her deeply and will do anything in my power, humanly, for her. But I have to say, it’s an unimaginable ordeal at times and I feel so very, very human and vulnerable to all the uncertainties and fears of the unknown. How much strength does it take? Do I have enough of that? I draw on a deep wellspring of inner strength and my faith, the support of friends and co-workers, and the knowledge that there is help out there for me if I reach out and seek it.
From a letter to a friend from my high school days, written July 10, 2018:
“…I want to respond to what you wrote in your letter about dementia and how people don’t improve but keep getting worse. You raise some good points with the implication that sooner or later I’m going to have to settle her in a memory care facility. That would be the absolute last resort. It’s a complex issue, and I’ll address it this way. It’s very difficult to grieve the gradual loss of a loved one while they’re still alive, but curiously enough, this is a fact of life now. It’s difficult to put in words, but the mother I see now and every day is “Mom,” the parent I love and cherish. She is my mother, she looks like her, she is the person who raised me, baked cinnamon rolls for us and cookies to have when we got home from school, was there to greet us every afternoon, a loving presence. She is the mother who ceaselessly tried to intervene between me and my father to keep the peace in the family. No matter how altered she becomes, no matter how irrational (like late tonight) she will always be my mother. I realize also that she won’t get better, but the decline is so slow that I don’t really think about that. Each day is sufficient unto itself…”
Dementia Journal, October 10, 2019, written 3 1/2 months before Mom passed away.
It is getting more and more difficult to write this Dementia Journal as I fear I’m repeating myself and rehashing some of the same thoughts and feelings. But continue it I must until the very end when Mom is at last released from a brain and mind grievously ravaged by dementia over many years now.
As she nears her 96th birthday, Mom doesn’t seem to know me or any of those close to her anymore. (I can’t bear to admit this) She may gaze at me with her sweet smile but I don’t think there’s much awareness that I’m her son. “Who are you?” She frequently asks me. When I explain to her that I’m her son, she tells me she didn’t know that. However she seems to know my voice and my hugs. On some deep level she knows me because I am, after all, her son. Since she can’t remember names she calls everyone, including me, by the name of our first caregiver/home aide. At least she doesn’t have to even try to think of anyone’s name. It’s kind of sweet in a way because she uses the name “Judy” so naturally with everyone.
Mom is also diabetic and has nearly gone into comas twice from sugar lows out of nowhere in the range of 37-42. Normal blood sugar is 100. The times she had those lows were the most frightening experiences I can ever recall in caring for Mom. Fortunately I was able to give her emergency Glucagon injections and pulled her out of the lows without having to call 911. I honestly thought I was losing her during those two episodes. I never know when another will occur. Now we have Hospice so I can always contact them as well as 911 in any emergency.
Mom is also totally incontinent, almost completely immobile, and I must now do everything for her. She does occasionally still feed herself from packets of baby food that we give her three times a day plus two nutrition drinks. She’s losing weight even though she eats as much as ever.
She has atrial fibrillation for which she takes two heart medications, a diuretic and a full dose of aspirin as a blood thinner.
But most noticeably she is in the advanced stages of dementia, and I am nearing the point where I’m going to have to give her Ativan (we use the generic Lorazepam) every day now so as to try to ward off the worst of the fear, anger, confusion and paranoia of Sundowner episodes which are occurring more frequently now and at other times of day than late at night. Two nights ago she talked nonstop from 6:30 til midnight even after taking Ativan. I should have given her more because I was about at wit’s end. I try to be as patient as I can be but sometimes It’s too much on me and I almost literally run from the den to the living room at the front of the house and collapse on the sofa while she calls for her mama and daddy over again from the den. Mercifully this will often die out free a few more minutes, and I can close my eyes and rest for a brief period of time. We also have a supply of the antipsychotic drug Haldol in the event she gets totally out of control. That has not happened in about a year and a half, but I will never forget that night.
“Mama, daddy, come get me quick. I’m dying.” I hear this a lot now with the repetitions both numbing and depressing. “Where am I? Take me home.” She says this a lot, too. In fact she is obsessed with dying in as much as her brain is capable of engaging this concept repeatedly. So she’s afraid of dying and yet seems to be ready for that event. I can’t really figure out what’s going on. I’ll always remember that night back in March where with lucidity she kept saying she was ready to go and be with God.
The other night at bedtime, the bowel movement and incontinence seemed endless. As soon as I thought she’d stopped and I had finally cleaned her, it would start again. I heard myself self-pityingly saying, “Why me? Why me?” There’s no answer for that. Finally when she was through using the bathroom (figuratively since she uses a portable commode), I get her in bed and then have to attend to the two pressure sores that are so difficult to heal. Once again medical grade honey or zinc oxide cream and foam bandages. Often, too, this whole bedtime process can yield a scrape against the arm of the commode and a rivulet of blood comes down her arm or leg that had to be bandaged. Her skin is thin as tissue paper. I’ve got boxes and boxes of bandages of all sizes and description.
I write all this not to garner sympathy or pity but to let others know what caring for a loved one is like who has dementia, plus the ravages of age. As I mentioned, the dementia is getting worse and she will often actively try to fight me when I attempt to feed her or give her her medications. I’ve developed strategies for coping and dealing with this, too. Sometimes I get very angry and impatient and say things I wish I hadn’t. Other times I’m silly and try to joke with her. But what ultimately works is calm, steady assurance that I am trying to help her and that I love her. One night after trying to grab my arm and scratch me and pull my hair, I spoke to her softly and the next thing I knew she was gently patting my arm and thanking me.
I never cease to be amazed by Mom. Yesterday morning after a horrible night during which I thought I was going to lose it, I went into her bedroom to begin preparations for getting her up and ready for breakfast. To my astonishment and delight she seemed almost like her old self. She had been lying in bed awake looking all around. She was happy and excited. She wanted to redecorate her bedroom. She asked me what we should do about the small chandelier, what new flowers we should put on the nightstand. Everything looked beautiful to her throughout much of the day. She was loving, kind and sweet and complimentary of everyone.
It’s amazing how the mind is capable of recouping some of its powers even if it’s just for a short time. When Mom is happy and content, I can’t tell you how happy it makes me. The right order of things seems to be restored. The terrible mental pain and suffering of dementia is temporarily blown away. The mental fog has lifted.
I know these times of clarity and light won’t last and so I have to steel myself for whatever lies ahead. I try not to imagine what the worst aspects of that could be. Who knows? I just hope my health holds up.
Late at night after I’ve gotten Mom to bed I sit out on the porch with just my thoughts. No phone or other distractions. I almost compulsively relive some of the decades-old mistakes and terrible decisions I’ve made. I seem to have to do this like the ancient mariner in the Coleridge poem. Of course this does me no good, but one job-related event in my past was so horrible I seem to have some kind of perpetual post traumatic stress about it. I’ve been plagued by this for years. And then I get the awful idea that my unending stress and the preoccupations of caregiving are penance for past mistakes and sins. But I try to rid myself of those destructive thoughts and concentrate on the fact that I have been privileged to care for Mom these many years. Just as I was once helpless and totally dependent on her, she is now helpless and totally dependent on me. The joy she still finds in flowers and things of beauty remind me that none of this has been in vain and that we are all eventually called to sacrifice deeply. I knew years ago that caregiving was a sacred mission I could never turn away from. I hope I am able to continue doing the job.
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