A few years ago I freed myself from a live-in relationship that grew awkward when my man began to drink too much. My home became peaceful. I didn’t mind living with my adult son with lupus, because we had grown into a comfortable give and take. He pulled his weight the best he could and that made the sacrifice on my part o.k. We coexisted happily. His music resonated through our old house and soothed my soul.
I worked from home at a job I enjoyed for a boss I loved. I connected with my friends frequently through online conversations and Facebook posts. Now and then I drove an hour for a poetry reading or someone came to have dinner with me. I enjoyed creative outlets like poetry, making jewelry and drawing and painting. And I even got myself a puppy in December to fill in the blank spaces and get the exercise I really needed. My mind was free to roam on our walks with the open sky above me.
At night, before I fell asleep, I watched something fun on Netflix – something I really wanted to watch, or I read something I really enjoyed reading. I had visions of making my own movie and plans for writing my own books. I wrote down ideas and sketched paintings in journals. But all the books and screenplays I started to write, and big paintings I wanted to paint, waited patiently for me somewhere down the path. My life was comfortable, almost perfect, once I had my puppy and started to feel healthier. I was very content. For about two months.
Then on February first my father choked on a bite of cherry pie and my world turned upside down. Forty days later he passed away from aspiration pneumonia. During that 40 days I had come down twice to South Carolina, and ended up staying, providing hospice care for him for his final five days.
I learned how to give him tube feedings, empty his catheter, help him feel cared for and comfortable, and a nurse came once a day to bathe him. Now and then his wife, Jamie, who had dementia, would lean over him and sob. She would tell him how much she loved him, and he would do the same with the little bit of breath he had. His chest compressed with her weight, he was unwilling to ask her to move. His first night home he called for help three times, asking me to roll him on his side this way, then that way, because he could not get comfortable. I paid someone to spend the night after that so I could sleep and be alert to care for him during the day, but he never called for help again at night. I assume when he realized I hadn’t slept that he suffered through his difficult nights and never complained. He was very aware of the burden of caring for him and expressed his gratitude frequently. He accepted restrictions like "nothing by mouth" with a final resignation to mortality and, without a whimper, left us on the morning of March 11 at 8 am as Jamie and I stood at his side.
At that moment I inherited the responsibility of caring for Jamie. Her dementia is at stage 3 on a scale of 4. I instantly jumped trains from the burden of hospitals and feeding tubes to 24 hour responsibility for a beautiful, healthy woman who, at only 64, cannot remember the words for things, get herself a drink of water, or put on a shirt.
About a year before, Dad had asked me if I would take care of her after he died. But he was doing well and that seemed far away. They were traveling internationally, he was taking care of her at home, he was considering assisted living because of his post-polio syndrome. Had he moved into a place like that with her, everything would be different now. She would be familiar with it and could have stayed. My responsibility would have been to visit her frequently and make her feel loved. That was one vision. Another vision was to put an addition on the first floor and bring her to my house where helpers would come and watch her while I worked from home. It seemed doable enough. I loved my father and I loved Jamie, and I didn’t mind the idea of one more person under my roof that needed me. He told me “she would more than pay her way.” So it seemed doable.
My father and Jamie lived in a luxury condominium in a thriving tourist town—Beaufort, South Carolina. The view is spectacular and the rent is commensurate. His navy pension, as a 100% disabled veteran officer for more than 10 years, supported their comfortable lifestyle when combined with some of her income from pensions and social security. This is where I’ve been living since February.
I am writing from my room in the condo about to begin my day of working from home. Jamie is still asleep, but someone is coming in about 15 minutes to stay with her while I work. This is our life at the moment. I don’t know how long we can stay here, but right now it’s very good for her. She loves this place and has many friends in the building that treat her like gold. It’s a life I never dreamed I’d live in a place I never imagined I’d be with people I never would have encountered as new, dear friends. I want to share this adventure with you.
I’ve left port, raised my sails and found the wind. The sea is choppy, my course uncertain, and my destination a complete mystery. But the wind is with me and I feel that I’m doing what I have to do. Am I doing it the best way? What are the repercussions for my son in New Jersey? How many years can I sustain a life that centers around someone becoming ever more dependent on me 24 hours a day? What will happen as her dementia progresses? What will I do if I become frustrated with her behavior, or depressed over missing my adult kids and easy life back in New Jersey?
Why have I left them all, and my puppy, behind to pick up the responsibility my father gave me? That’s the easiest question of all. Because I love Jamie and I see in her the brilliant woman she once was, and I pity her beyond words. This is what sustains me, now two months into living with her here in the condo.
I have been told several times by several people to keep a journal and note her behavior and our interactions. This is my journal. I’ll post as frequently as I can to track her progress and my education as I learn to navigate the uncharted seas of life with dementia.