Dementia Journal, June 17, 2019

The summer heat is bearing down on us big time now in the Lowcountry of South Carolina. I’m feeling my age, too, and can’t seem to take the heat like I once could. Shady sidewalks have never seemed so inviting. It’s an effort to walk upright properly lately without straining my back. I tend to want to walk bent forward slightly, which is a terrible thing to contemplate because it seems like such a sign of old age. Ironically I don’t think of myself as being my age at all; it’s just that I feel it more frequently now.

Part of the reason for the hastening signs of physical aging could be related to the physical and emotional demands of caregiving for Mom the the past ten years: hiring home aides, keeping up with paperwork, taking care of the house and physically assisting Mom with all her needs. She can still feed herself when she’s not too tired, but she is dependent on our help for everything else. It’s sad because I remember her when she was so vibrant and active and walked miles every day.

Some days she sleeps 20 out of 24 hours. This is a lot less stressful than when she’s verbally assailing me, pushing and kicking me, and calling me every manner of awful thing. It worries me though that she sleeps so much. Still, she’s mostly so sweet that I’m less bothered by the paranoid dementia storms, although they are certainly more frequent. It’s unbearable to think about when she’s gone and my whole reason for being vanishes (or so it seems, since caregiving so totally preoccupies my life). It will all be gone before long, this only life I know, and a void will loom ahead in my life. But my fears about loss of identity when I retired have not been borne out, and I now live life free of the daily obligations of work, and I love it. I quickly discovered that my life was not my job and career, even though I have no family of my own. I think when Mom passes, impossible as that is to imagine now, I will go through a period of grief, but that I will emerge into a life where I am truly free for the first time. Since I am not married and have no children, I will be alone with myself, much as I was before becoming a caregiver. If my health holds, I have a feeling the days will go by faster than ever before because there are so many things that interest me. I have my lifelong passion for photography to pursue, and I have so much I want to learn and read.

I’m not as worried about Mom when the time of passage comes because I believe she’s ready. Despite her advanced dementia she is preoccupied with dying and, as one would imagine, is very anxious about death. A devout Christian, her most frequently repeated questions and statements are these: “Am I dying?” “I’m dying.” And, this more than anything else: “Pray for me.” When she’s awake, she will request this of me and the home aides multiple times an hour. It’s become a type of mantra.

Moments of extended lucidity are rare. However, one night this past March, for about 30 minutes, she was very lucid. I was so startled that I wrote down some of what she said.

I recorded this in the notes on my phone the night of March 26, 2019:

“Mom’s been saying these things for a half hour:

“Where am I? Am I in Heaven?”

“God take me. I’m ready to go.” I’m dying because I’m not living.”

“Thank you, God, for a beautiful life. I’m praying that I fall asleep immediately.”

“Mama, take care of me.”

“God, I’m ready to go. Take care of me. I’ve had a wonderful life.”

“I’m dying. I’m miserable and I’m ready to go.”

“Thank you, God, I’m ready anytime.

“Mama I’m ready to go. I’m happy.

“God, thank you for a wonderful life and wonderful children. I’m ready to see you.

“I think I’m dying a peaceful death.

“I’m praying that God will help me.”

It’s now the middle of June. Mom hasn’t repeated these words since that night. It’s almost as if she was going to tell me that once and that was it.

Last month after a series of events related to her health which constituted a tipping point for me, I told my doctor I was ready for Hospice to come out and evaluate Mom again. She was accepted into Hospice, and I’ve felt a great sense of relief ever since, as if a great burden had been lifted from my shoulders. We have a very excellent nurse who comes once a week to check Mom’s vitals, listen to her heart, check swelling and pressure sores and how they’re healing, and talk to me and answer all my questions. They’ve sent us a lot of supplies. It’s been a Godsend, yet I feel Mom could continue her gradual decline for some time to come as we install a hospital bed and do every thing possible to keep her out of the hospital and a nursing home. That is my fervent hope— that palliative care at home will be the answer now and at the end. But whatever happens I think I will be more prepared and more able to handle the difficult days, weeks and months that lie ahead.