Time and Caregiving

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Time and Caregiving

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It’s been over a year and a half since my Mother passed away at 96. Memories of the ten years I took care of her in her home have slowly started to fade. Not that they won’t always be with me, it’s just that the very sharp and painful memories and feelings of loss in the months after she was gone and the pandemic was just starting don’t return as often in flashbacks -- particularly of the last few days she was with us. I will never forget seeing her in a hospital bed in her room, getting oxygen, with hospice nurses attending to her. I was getting pretty distraught and anxious, and I was functioning purely on adrenaline. 

I went back in the archive of my online writing the other day and found what I believe is the first entry in eight years of sporadically keeping a Dementia Journal. In the most recent years up to Mom’s passing, I was pretty regularly writing one entry a month. Although not very frequent, when I did sit down to write I vented and wrote in some detail about my experiences, emotional state, and both the joys and heartache of caregiving. I’m glad I wrote what I did because I believe it has helped others going through or facing similar experiences.

Reading this first Dementia Journal entry from November 2012 when Mom was 89 reminded me how gradual her mental and physical deterioration was. A couple of years earlier our family doctor had told me to expect a very slow decline. Since I was working full-time and caregiving up until 2017, those years now seem to have flown by in a blur. Each year for Mom had its own milestone. For instance, there came the time when she could no longer use her walker to get around and lost that essential freedom of movement. I’m not sure what year that was, but when I wrote what follows she could still make it out to the porch where she absolutely loved to sit in one of the rocking chairs and look out over her garden.

In the early writing below, you can see how essential it was for me to escape from the house and find peace and respite in nature. It was from my Mother that I acquired my passion for nature and the beauty of the natural world. I’m forever grateful for that.


Four Kinds of Caregivers

"There are only four kinds of people in the world: Those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers."

-- Rosalyn Carter

Sally Abrahms wrote this in the November 2012 issue of AARP Bulletin:

Grief: Caregivers frequently grieve the loss of the person they once knew, even though their loved one is still alive…

Caregiving brings about a swirl of feelings: sadness, frustration, anger, anxiety, guilt, resentment confusion, isolation, loss, fear, grief, impatient and stress…

Guilt: During caregiving, guilt is constant. Guilt is not spending enough time with your loved one…Guilt for having negative feelings. And guilt for resenting your new role. On our hundreds of trips back and forth to visit my mother, I remember thinking that — shame on me — I wish this would be over so I could get my life back…

Exhaustion: Caregiving often leaves the caregiver feeling depleted, both physically and mentally…

12:30 pm

I’m sitting on the porch in my favorite rocking chair looking at a yellow butterfly skim over the branches of our Savanna holly trees. Earlier, I enjoyed watching birds joyfully bathing in our garden birdbath. It’s a beautiful early Sunday afternoon. Blue skies, cooling breeze. A perfect day, really, and I’m thankful I have this peaceful house/sanctuary to retreat deep within, even though it’s not my house or garden or anything I had a hand in creating, realizing, or making happen. The thing is, I can’t go anyplace. The caregivers we hire are off for the weekend, and my Mother can’t be left alone, even for five minutes. I would like to take a brisk walk. Can’t do it. I need to go to the grocery store. Not possible. In a few minutes I’ll fix Mom’s lunch and get her to come out on the porch and enjoy what I’m experiencing now. I want to be outside as much as possible, so I try to be on the porch often or in the back garden sitting by the fountain.

I know well all the emotions Sally Abrahms writes about in the excerpt from her article on caregiving quoted above. Right now as I look at brilliant yellow blooms on the cassia tree in our front garden, I feel a momentary sense of equilibrium and some semblance of rest and relaxation. Living in the moment. That’s what time is for caregivers — living moment to moment, never knowing what’s going to happen next with your loved one downstairs or in the next room. What will she be calling me to do? I usually know according to the time of day or night, or I could be shocked as the other morning when she had another fall — sliding off the bed onto the floor as she tried to use the portable commode next to her bed. And the night had been so uneventful until that point.

As evening and darkness approach so much earlier each day, I begin to really feel alone. There’s this subtle yet gnawing emptiness and fear of the unknown. This is accentuated since the days are so much shorter now. Feelings of depression begin creeping in, which I try to shake off. Going to work the next morning helps me do this, but I’m often anxious at work. I try to continue to do the best job I can, and I manage to mask my feelings, but it’s difficult. There’s this constant low-level feeling of unease.

This past Friday I took a day off from work with hopes of going for a long drive in the country, but I ended up getting a lot of errands done, which was good, and the day flew by. Our two regular caregivers, who come in every day when I am at work, were there that day so I had the rare luxury of doing whatever I pleased and not being bound to the house. I took a nap from about 3-4 that afternoon with Ginger, our cat, on the bed with me. How utterly blissful to have an uninterrupted hour or two of peace. Imagine, something as simple as a nap being so priceless a luxury.

On Saturday, our very part-time weekend caregiver was here for four hours, so I did a few errands, including a very pleasant trip to Costco where I indulged in some treats for us, including a big container of mini pumpkin/cinnamon muffins (delicious) and a bag of pomegranate dark chocolate balls. After that I drove out to a beautiful nature reserve ten miles from where I live which I hadn’t visited in more than a year. I walked the familiar and loved trails along the marsh and wetlands into the forest where I rested awhile beneath my favorite live oak and then on to a boardwalk portion of the trail through a small section of cypress swamp. Rest for my soul and momentary peace, some time to reflect and relax before heading back to the city.

Finally, these thoughts. This morning relaxing in bed for s short while, I looked through a photo album with pictures of Mom, me, my brother and sister, and niece and nephew taken over the past ten years or so. I saw my Mother as she once was and with her beautiful smile. That is something I see just as powerfully in recent pictures. Despite the infirmity of age and dementia, she still has the glow of that inner spirit and spark of life she always had. Nothing can ever take that away.

Originally written November 10, 2012.

Photo by John Van Dalen, Hints of Autumn collection (2021)

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