Remembering the heavy toll of depression, but also the very real possibilities of a new life and new beginnings
Flash back to the end of summer, 2017, one of those fatefully significant years in my life. I had retired only a few months before, and I was having a hard time feeling connected with people since my job and career of 21 years had ended.
The 5 1/2 years since then now seem like an eternity: I lost my mother, and then came the nightmarish years of the pandemic when I was a afraid to go anywhere indoors and avoided contact with people, isolating myself, a loner to begin with, now of necessity even more so than in the past.
For seven years before I retired, I was the primary caregiver as my mother gradually declined with dementia. I had worked full time as well, with the help of part-time home aides. I didn’t have any time at all to dwell on the larger existential questions of life. But all of a sudden when I retired, I had to get up each day and carry on with my duties of caregiving, having no job or social life to give me other purposes for living. Sometime I wonder how I coped and managed to be a caregiver for so long. But I know for certain it was all possible because of the love and devotion I had for my mother, who gave me life, and loved me and my siblings more than anything in the world.
Then, in the Fall of 2017, I started slipping into depression, and it caught me off guard because I thought I was coping so well. By December I hardly wanted to come out of my room, but I did continue to fulfill my responsibilities to my mother, who by that time depended on me for everything.
I have experienced the very worst effects depression can have on a person, going back 45 years to when I was in my late 20s. With my earlier-in life-episodes of Major Depressive Disorder (MDD), I could at least partially discern the situational and environmental causes, even if they seemed horrifically bizarre and totally inexplicable. But this was different.
I wrote this in my Dementia Journal, November 9, 2017:
…I now wake up most mornings feeling depressed and wondering when I will free from the anguish and tribulations of seeing a loved deal with dementia. I steel myself for another day of being at home helping the caregivers with Mom as the dementia progresses and I lose a little bit more of her week by week and month by month. I keep hoping it won’t get too much worse for her, that things will level out. But each morning also as I get up up for the day and see her beautiful smile, I feel hopeful, even if I’ve gotten up with her three or four times that night and early morning. All the dementia agony and confusion recedes for a time during the morning when there’s lucidity and awareness.
Once I finally get up and fix breakfast and coffee (it seems like such a burdensome chore when you are fighting off depression) the dark clouds lift a bit as I look out on our back yard flooded with sunlight…
And I recorded this Dementia Journal, dated December 17, 2017:
…One has to look at depression as not only a medical or biological condition (and I’ve always struggled with this idea), but also as a spiritual and religious experience. In periods of depression throughout my life I have had to confront the most urgent questions about life’s purpose, good and evil, and the nature of mental anguish, whatever the cause, and why some of us must go through such terrible suffering. In years past, after long months of struggle and then slow healing and awakening as from a deep sleep, I have come out into the light transformed — hopeful, optimistic, and happy than I had ever been. It seems paradoxical, but it isn’t. It makes perfect sense.
I hope and pray a new path in life awaits, this time during my final years when my life’s work is done and I realize there will come a time when I see everything clearly…
A finally a month later, this:month later, this:
Dementia Journal, Jan. 18, 2018 — the hope of new beginnings
I feel there is a new beginning in my life now, the start of something I’ve hoped for, a confidence that my depression will continue to subside and that the intense and terrible anxiety I felt late last year will also continue to fade until I feel like I’m in control of my days again. I am so thankful I feel better because as you will see it takes every ounce of patience and self composure, plus using my mental survival wits, to weather the unpredictable crises that pop up out of the blue each day of my life as a caregiver.
I really do have to live one day at a time as I enter the eighth year of caring for my 94-year-old mother who suffers from increasingly severe dementia and diabetes. She had two very bad diabetic lows this week — never before like that — and a terribly angry and wildly paranoia hour today wherein I was told repeatedly to get out of her house because she didn’t trust me and I was trying to take the house from her. She tried to kick me and hit me with a Kleenex box. It was an awful and frightening episode.
It’s also very alarming and frightening to see her hands shaking and trembling when she has those diabetic lows. Her blood sugar reading was 39, so I had to work fast with orange juice to get it back up. Contrast this with a normal blood sugar and sweet personality and mood when she tells me she loves me, couldn’t live here without me, and takes my hand and holds it close to her face.
As you can imagine, her personality shifts are jarring and upsetting in the extreme, but such is my desire to keep her out of a nursing home that I’m willing to put up with more than I ever thought I would or could.
It’s so sad and disorienting to hear my mother saying terrible things about me, and an hour later, holding my hand and thanking me for all I do.
But there’s no let up…The toll is heavy on my heart, and my soul is weighed down seeing Mom disappear excruciatingly slowly. So slowly and inexorably that when I see photos of her from just a few years ago, I am dumbfounded and realize how much I just don’t notice and don’t remember what she and I are going through.
I wonder, pray and hope I can continue to care for her, and at the same time have some sort of life of my own. But this is all sacrificial. I know that deep down I can’t imagine doing anything other than what I’m doing presently.
Sometimes, however, I feel so trapped and cut off from others and the the world around me, that things seem to be closing in and I can’t see a way out. But I most strongly felt this way when I was feeling so depressed late last year. That has lifted quite a bit lately, and I feel considerably better and my appetite has returned. I had counseling sessions and am on an antidepressant they really works for me. Years ago I suffered terribly without any of that, and I paid a price.
Whenever I succumb to peering into several imagined scenarios involved the future and start to ruminate and dwell on what might ultimately happen to Mom as well as to me, anxiety starts moving back in. I begin to feel an existential sense of dread. Those feelings were most acute late last year almost every morning, and I truly didn’t want to get out of bed. I made myself do it.
Mornings are more bearable in this new year, and as the days unfold, I feel a certain level of confidence returning as long as I dwell on, and live primarily in, the multitude of present moments that make up each day…
Now it’s late summer 2023, a summer full of terrifying foreshadowings of human-caused climate change as wildfires destroy huge areas of Canada; heat waves persist in the hottest summer the planet has experienced in 120,000 years; extreme floods wreak havoc all over the globe; the oceans are overheating; and a heat wave is reported in the middle of winter in the southern part of South America. Unprecedented.
I live alone now. No job or caregiving responsibilities. But this summer has changed what might have been a carefree season of good memories, into a time of anxiety and foreboding.
And in the past week, I have been dealing with the awful and unexpected news of a loved one’s own battle with the most frightening kind of depression. My mental and emotional foundations are shaking and quivering with dread of the unknown and what’s ahead for her. I am having flashbacks to my own terrible battles with depression. But, as when I was for years caring for my mother and keeping depression at bay, so, too, must I be strong now and have hope that this precious loved one will emerge from her dark tunnel and be whole again. Depression fragments and attacks the very core of one’s being and sense of self. But she is a very strong person, and I will be there for her any way I can. She will overcome this.
I don’t have the words to respond to this at the moment- but wanted to let you know I hear what you have written.
@onlysujema Thank you!
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I didn’t realize you had dealt with depression in the past. It’s a terrible, dark and lonely place to be. I try not to live in fear of it returning but some days I can feel it getting near and it scares me. I don’t want to go there again.
I can totally understand why you were depressed while caring for your mother. What a hard time that must have been for you…so hard! I am sure you did feel so lonely day after day and especially on the days when she didn’t know who you were. How blessed she was to have you to care for her.
@happyathome Thank you! Taking care of Mom was the most rewarding and fulfilling thing I’ve ever done, despite the emotional toll. I am forever grateful I had the stamina and perseverance to continue until the end when she passed in her bedroom, in her house.
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