It’s been four years since my mother passed away in January 2020, just a few months before the onset of the horrible and deadly Covid pandemic. I’m so thankful she didn’t have to endure the possibility of contracting that illness, for it surely would have been fatal and would have caused her so much suffering.
In the months after March of that year, I settled in for a long period of Covid quarantine, self-isolating and entering g a strangely quiet and empty time full of opportunities for reflecting on my many years of caregiving for Mom. They ended rather abruptly after her rapid decline right after the new year had arrived. We had observed her 96th birthday only a few weeks before. My sister and all her family were with us that December. How blessed we all were that Mom could see them all that last time.
I had been writing detailed “Dementia Journal” entries about once a month. They was pretty much all I could write during those years, preoccupied as I was with the “36-hour days” of working and caregiving. I wrote several more journal entries dealing with dementia and caregiving anfter Mom passed, and then it was over. I had no more I wanted to say.
I am re-posting this entry from July 2020 in hopes others who may now be going through what I experienced, or who might have many questions, will find this helpful. This is one of the few entries going back to 2014 that I can bring myself to read now. The others are quite detailed and painful to read, but with the passage of time I am nearly ready to re-read them when the time feels right. Despite the anguish caused by dementia, the journal entries also reveal how sheer love and endurance, and trying your best to help another person, are ultimately so deeply fulfilling. And it reminds me anew what a beautiful soul my mother has and that I will see her again.
From my Dementia Journal, July 24, 2020:
When I was taking of care of Mom as her dementia and physical infirmity grew worse year by year, I had a number of shields that, looking back now, protected me from succumbing to depression and despair. One of those was time, the sheer length of time that constituted her decline. It was so gradual it was almost imperceptible. As we like to say today with the pandemic, I was in a perpetual state of “new normal.” As bizarre as the occasional fiery outbursts of anger, paranoia and even rage against me were at times, the other mother who was the Mom I knew from childhood was mostly present, though in altered intellectual and cognitive form. In other words, she knew who I and my siblings were, she mostly knew the caregivers up until the end, and she loved each of us in her own way, dementia or not, and her memories from decades ago were fairly intact. It is that beautiful smile in so many photos I took of her in the past ten years that everyday melts my heart whenever I look at one of them. Sometimes I can hardly hold back the tears, and it’s been almost six months since Mom passed away. (This was written in July 2020).
There is something I want to impress on those caring for their own loved one suffering from Alzheimer’s or other types of dementia. No matter how much they seem lost in their narrowing worlds of remembrance and selfhood, no matter how strange their behavior or how difficult it is for the caregiver to hold onto sanity in the midst of a loved one’s mental chaos, the power of love is overwhelming and will help you and your loved one out of that darkening tunnel. Mom never lost the capacity to show love and her deep Christian faith never diminished, even at the very end when she was sleeping almost 24 hours a day.
A book that really helped me when. I was caregiving was “Grace for the Unexpected Journey: A 60-Day Devotional for Alzheimer’s and Other Dementia Caregivers” by Deborah Barr. Barr writes that everyone needs to feel loved by the significant people in their lives, and that need doesn’t disappear even if someone has dementia or Alzheimer’s. She lists five “love languages” for reaching out to people with dementia. I want to describe how each applied to my efforts to take care of Mom in the most loving and supportive ways I could. Bear in mind that this was done, or attempted at least, even during those times when Mom’s disease turned her into an almost unrecognizable person.
1) Physical touch. This includes what Barr terms “expressive” touch such as holding hands and stroking hair. I found myself doing this often. Sometimes Mom would just hold her hand out and and let me know she wanted it held. Hugs were frequent, well beyond the point where she seemed to even want that. And I found I needed to hug her often because she quickly forgot I had done so.
2) Quality moments. This is so important, and includes giving your loved one moments of “laughter, pleasure or your undivided attention.” Mom had a really good sense of humor which she held onto until the very end. I could always say or do something that would make her laugh, even if feebly, or smile. She and I could laugh at some of the funny expressions or jokes from my father. I remember that we had a little parting joke/leaving routine with one of the caregivers who helped us at night. Mom was very fond of this gentle person, with many years of experience as a caregiver, who knew how to really reach her and could calm her on bad nights often enough that I didn’t have to come downstairs to help. Come 11 o’clock or midnight when she was getting ready to go, Mom would reach out her hand and Andrea would grasp it and they would hold hands for awhile. Andrea would joke with her right as she was leaving, “Now you stay out of trouble while I’m gone.” Mom would laugh and reply, “How am I going to get into any trouble?” All three of us would laugh and then I would whisper in Mom’s ear, “Tell Andrea she needs to stay out of trouble.” Mom would point toward Andrea and say just that, bringing more laughter. I’d joke with Andrea saying, “When she points that finger you know she means business!” The three of is went through this many evenings, even on nights when two hours earlier we might have had to give Mom an Ativan because she was so agitated. Laughter really is the best medicine.
3) Gifts. I can’t say enough how important this is. If you think people with dementia don’t appreciate gifts, or they don’t know what you’re doing when you give them something special, you’d be mistaken. Every time I’d go out shopping, such as to Dollar Tree, I would bring back a little stuffed animal or some other item that I knew she’d like, but most of all, having been an avid gardener, she loved receiving potted plants or bouquets of cut flowers more than anything. For years I had one, and sometimes two, vases near her filled with flowers I’d purchased at the grocery store. When I’d come in from shopping and present them to her, she’d light up with a huge smile and always say the same thing, “Oh, they’re beautiful. I love them.”
4) Words of affirmation. This is so important also. My goal no matter how I was feeling, or whether or not Mom had had a good day, was to offer her constant words of encouragement and compliments. “You look so good today,” I’d tell her often after I’d brushed her hair and gotten her dressed and ready for her day. Mom was a very refined and elegant lady, and I made sure she knew others were aware of her quiet dignity.
5) Acts of kindness. This could include something as basic as focusing attention on Mom, especially when company was present, and it was easy to forget they she was sitting there as we chatted about this and that. When she was more alert and cognizant of what was going on, she tried her best to be part of the conversation or socializing. Toward the end, she was usually sleeping when visitors from the church came by, but everyone made an effort to talk to her. Always a gracious host, dementia may have put a dent in this ability, but she was always grateful for the attention given her.
Just as Mom deeply loved her children, we loved her back just as much. Even though dementia robbed her of so much, it couldn’t take away her capacity to love and to be loved. For that I am forever grateful.