Looking back on some of the harrowing and uplifting moments in the day-to-day struggle with my mother’s dementia in Daydreaming on the Porch

Every Mother’s Day is difficult for those who’ve lost a loved one they cherished and who brought them into this world. For me there is special anguish mixed with love and gratitude. I had a mother who dearly loved me and my brother and sister. Her children were the most important thing in the world to her.

Vibrant, beautiful and full of life, her last years were spend slowly succumbing to vascular dementia, a disease I feel certain was brought on by the severe diabetes she was stricken with in her late 70s. We had no idea this would happen to her because she was so conscious of living a healthy life, eating right and exercising. She instilled that in us, too.

For seven years, between, 2013 and 2020 when she passed away at home under Hospice care at age 96, I kept a “Dementia Journal,” and wrote detailed entries every couple of months on average. Each entry poured out of me late at night after I had gotten Mom to bed, sometimes following a harrowing evening dealing with the notorious effects of Sundowner’s Syndrome when a person suffering from dementia experiences extreme fear, anger and anxiety , and lashes out at anyone who is nearby in reaction to the inner terrors that come with awareness that you are losing yourself and can’t seem to make others understand what it’s like.

In those journal entries, I didn’t keep any type of log about the day-to day-tribulations and occasional times of happiness and peace that came over Mom. I wrote about what I felt was happening to her as a way of not only coping with all the caregiving duties I had, but also trying to understand this terrible, life-altering malady of the brain and mind.

Being a writer and former journalist, I included brief snippets of dialog that I had quickly written down in a notebook when I had intuitions that I had to write down what she was saying. A sense of urgency came over me they I can’t quite explain, even today. I didn’t do that too often, and I never recorded her on my phone because it just didn’t occur to me, and I sensed that would be invasive of her privacy, even if she had no idea I was doing it. She would have consented on most occasions, but I just couldn’t bring myself to do it. I know this is all hindsight, but I sometimes regret I didn’t record or take videos of her, because I miss her voice and presence so much. But I didn’t, and so be it.

My journal is so intense and so detailed that it’s been painful too painful to go back and re-read it. All of those years of caregiving with home aides to assist me come flooding back if I read even so much as a paragraph or two.

Writing and photography have been my singular passions the past 25 years since I’ve lived in Charleston. Mom knew how important this was, and she was a huge fan of my Nature photography. She was the one who, in fact, instilled in me my steadfast and lifelong love and appreciation of Nature. She loved flowers as much as anything else in life, and always had bowls and vases of cut flowers, bought at the store, or cut from her garden. When she could no longer procure them, I bought arrangements of cut flowers every week and was so delighted to see her face light up with happiness when I walked in the door and showed them to her.

Mom was a devout Christian, and what is so miraculous to me is that despite the ravages of dementia and loss of memory, she never lost her faith, even up until the end.

I never underestimated how much of life and her personhood she held fast to, even as her mind was robbed of so much of its capacity. Although there were many times I hardly recognized her during the manic episodes of anger and anxiety, she always returned to the loving person I knew so well. She knew she was loved and cared despite what she realized was happening to her. She never lost the radiant smile that everyone who saw it remembers and commented on.

Mom saved all the Mother’s Day cards I gave her, and now I have them among the keepsakes and mementoes of her that I’ve saved. One of them from 2010 had this message:

“

It’s often said

that the greatest gift 

a mother can give her child

is the gift of love.
That’s what you’ve given me

every day of my life.

Unselfishly.
Unconditionally.
And I will be forever grateful.

Thinking of Mother’s Day, I happened to come across one of my Dementia Journal entries written five years ago on May 13, 2018. I am re-posting it here because I feel Mom would have approved of my writing about what she went through and recording some of her words from my notes so that others can know more about the disease that is dementia, and how through sheer willpower, even if unconscious of it, faith in God, inner strength and the will to live, people like my mother can ultimately conquer dementia, dying and death itself.

From my Dementia Journal,
May 13, 2018

Today is Mother’s Day, and I’ve tried to fill the den with flowers because Mom loves them so much. I woke up late this morning because no caregivers were coming in. One was supposed to come and relieve me from 4-8 today, but she called yesterday and said she just couldn’t come — too much going on with Mothers Day etc.

“Sure, I understand,” I said, gritting my teeth. “I know it Mother’s Day; can’t expect anyone to work today especially if they’re a mother,” I told her trying to put the best face on the situation and trying feebly to be humorous. But that sinking feeling wasn’t going away. I hung up after saying I’d see her Tuesday. I was so looking forward to getting out of the house, but it’s Mother’s Day after all.

I came in the bedroom to get Mom up, putting on my best cheery demeanor and wishing her a Happy Mother’s Day. She smiled faintly and looked up at me and said, “I’m dying.” She’s said this several mornings in a row. Her vitals have been good. I discussed them with the doctor. Diabetes and atrial fibrillation under control. But she’s had a continuing problem with a stiff neck and associated pain for a few days now. Mom has an extremely low pain threshold. I thank God she doesn’t have arthritis or any pain to speak of. If she did, I really don’t believe I could handle it. When she has any pain at all she thinks she’s dying. “

“Mom, you’re okay. Everything’s okay”. “

“No, it’s not,” she’ll loudly snap back at me.
Maybe she’s right. Sometimes I don’t know. The first morning she woke up with the crick in her neck was one of the worst mornings I’ve had in a long time. She was in agony whenever she moved a certain way. Yelling out in pain. You would have thought she needed morphine.

Whereas you and I suffer mightily with this kind of pain, we know it’s a muscular problem that will go away before too long. Someone with dementia doesn’t think of it that way. To Mom it’s horrible and catastrophic and she’s convinced it’s killing her. I gave her Advil and put a heating pad on, then gave her Ativan, sedative. She was sleeping in another hour or so.

I really don’t need these sorts of relatively harmless episodes to occur. It frays my nerves and makes me worry that one of her dementia “storms” will be brewing out there in the bewildering and scary ocean of her discontent and fear. I say this because after a lull of a couple of months, the personality changes I dread have starting coming back every day, or every other day, the past two weeks. They don’t last long — an hour or so — but they shake and rattle whatever composure and sense of equanimity I’ve been able to achieve. And prior to a couple of weeks ago, I was actually feeling pretty good about Mom and my ability to handle things.

These angry and paranoid episodes sneak up on me and the caregivers. She’ll be as sweet as can be and have a peaceful, uneventful morning and afternoon when something triggers the mood and personality change. Usually it’s in the evening, so I can’t help but think it’s Sundowners Syndrome, where at dusk and in the early evening people with dementia get unusually fearful and anxious.

“Mom, please eat your snack because you’re diabetic and we don’t want you to have a low.”

“No, I’m not going to eat anything,”. She will testily reply.

“Who said I have to eat this? How do I know it won’t kill me?” she asks, referring to her peanut butter and cracker and vanilla pudding.

“Mom, I love you and I’m only doing what’s good for you. We don’t want you to get low.”

She looked up at me and with a strangely contemptuous smile, blurted out, “You’re lying. I don’t trust you for one minute.”

Thirty minutes later she had eaten her snack and was sleeping.

As I texted a friend the other evening:
“Mom is having personality changes briefly almost every day, whereas the past few months were practically free of that. She will get very obnoxious, suspicious and hostile and refuses to eat because she doesnt trust me. When I try in my nicest way to reason with her, she looks up at me and tells me I’m lying. I don’t even recognize anything about this person the disease creates, and which comes and goes. I’m not even using the word “who” in a personal sense because it’s not really a person I know saying this. It’s a construction of her disordered mind and thinking, but it’s very real and convincing..”

The following night there was this exchange. She had decided she wasn’t getting the proper care and didn’t want me in the house. She said I had to leave.

“I know you mean well,” she told me. But you’re not doing anything but sitting there. I need help. I hope you’ll leave of your own accord. I’ll send you a check for whatever I owe you.”

Naturally I don’t take it personally, these fleeting episodes of detachment from reality. But it’s upsetting nevertheless because if she doesn’t come out of it soon, I start freaking out a bit, thinking about that night six months ago when she got totally out of control and I thought I might have to call 911. Fortunately the other night, as happened on that evening months ago, that other person, my mother maddened by dementia, faded away, and sweet, gentle Mom returned. Again, thank God. I was praying.

Fortunately the serious depression I was experiencing last Fall is gone. I can’t help but think the antidepressant truly worked in this instance. I’ve always been skeptical, and I still have my doubts about their efficacy. But the intense anxiety I used to feel each morning and the dread of getting up is gone. This has been a Godsend because it makes me much more capable of dealing with Mom’s inexorably deteriorating mental state.

I’m enjoying keeping up with my photography, tackling at least some of the reading I want to do, and going to writing group meetings at the senior center. I really look forward to that. I can’t adequately convey just how much those discussions and shared reading of our writing has meant to me. There is life outside of caregiving, and retirement has made this possible. It’s been almost a year since I retired from my job of 21 years. Now it’s hard to imagine any other way of life than caregiving 24/7.

I’ve been writing this while trying to answer a stream of questions from Mom. I’m sitting next to her in the sofa typing this now. She’s asking where her sisters and mother and father are.

“Do I still have a mother and father?”
“Where are B__ and R__?” (her long departed sisters). “Are they in Heaven?”
“Am I normal?”
“Am I living a Christian life?
“Am I living?”
“Please tell me I’m not dying.”
“I want to live.”
“Please pray for me.”

My life is totally different now. My full-time caregiving was so all-consuming for years that I could conceive of no other life. I came became severely depressed toward the end of 2017, six months after I retired, but recovered with counseling and medication. I thank God for that because if I hadn’t come out of it, I don’t know how I could have continued to care for mom at home the way I had been. Never in my life had I had such a fully realized purpose in life. Never had I known the true meaning of unconditional love.

Now, often spending too much time alone in my apartment, I feel I’ve lost that sense of purpose in life. How could I not feel that way, and, what could possibly take it’s place?