My Aunt Joan has been on my mind a lot lately. She is mostly not in her “right” mind given her dementia, but certain parts of her personality still shine through…
A couple of people from Joan’s past have reached out to me after finding the blog post I wrote about her a few years back. I think it’s one of the only things that comes up when you Google her. I had several exchanges with a woman named Peggy, who might have been one of Joan’s best friends.
For a period of time, I had an idea about collecting stories about her from different people. I considered a podcast called Stories of Joan. When I began writing with Peggy though, she reminded me that Joan was a difficult, fairly negative person. She was generally not well-liked, though tolerated, in the town she lived in. I think I knew that on some level, but I also think that Joan made sure to be on her best behavior when I was around. She’s many interesting things, just not known to be well-liked, unfortunately. I haven’t given up on the idea of telling some of her stories, I’m still wrapping my mind around everything.
Joan is now in a facility called Presidential Oaks in Concord, NH. I recently drove 3 hours each way from Charlotte, VT to visit her and make sure that she was being treated well and in good hands. I called Presidential Oaks a few times beforehand to make sure it was okay to come anytime. They assured me that I was welcome any time at all. As we arrived, we were told her room number and not asked for any ID. We got onto her floor and there were many elderly residents in wheelchairs gathered around the TV in the reception area. We were guided to her room, 236, and saw that she was in bed. She was on her side, just her head peeking out of the blankets. As I said hello and asked her how she was, she said, “Terrible. Everything’s just terrible.” I told her that I was Abby, her niece, the daughter of her brother, Paul. She didn’t make much sense or have much energy. She didn’t seem to want to talk much. She mumbled a few things but then closed her eyes. I told her that I loved her and it was good to see her. I gave her a stuffed turtle that I had brought for her. Soon after, I decided to leave her room.
We went to the front admin area and spoke with Tracy, the head nurse that day. She said that some days Joan was up and walking around. Some days she’d wander around the facility and go places she wasn’t supposed to. Sometimes she was lively and funny. On other days, like today, she wouldn’t get out of bed. She would sometimes say that she was going to die that day. She was very concerned about her teeth. Even though there were no mirrors, she was sure her teeth were bad and going to fall out.
She would sometimes go to the wrong room and get in the wrong bed, but if someone told her it was a boy’s bed, she would get out right away. Tracy liked to call her Joan Rivers. She made it sound like she cared for Joan. She said how Joan didn’t ever admit to liking anything. If they had ice cream or fancy drinks, they would ask Joan if she liked them and she’d say no, but then if they offered her another, she’d take it.
I felt a bit better after talking with Tracy. I wondered if they make a habit of telling good stories to the family that comes to visit. Even so, it helped. It was strange to have come all the way from California and driven 3 hours from Vermont to only stay a few minutes. But honestly, that’s all I could take. It was hard and I knew it would be hard. I knew what to expect, but I still felt so sad.
The last time I visited her she didn’t know who I was, but at least I got to bring her ice cream and root beer. I got to sit with her in her room and talk to her a bit. I got to show her pictures of us and talk about her siblings with her. I don’t know why I felt I needed to get something out of the visit, but either way, it was hard to look directly at the shell of her former self and know so clearly that she doesn’t want to be here. She wants to die, but her body is alive and she must live confined in a facility with people paid to care for her and she really hates it all. It got to me that the place smelled vaguely of urine and possibly dirty diapers. We were the only guests I noticed at that time. I wonder if they get many visitors. After I left I called my dad and reported back to him that she was being cared for by kind, capable people and that the facility was very reasonable.
On the way home we stopped in Hanover, NH at Dartmouth College for dinner and ice cream. Rain had an aesthetic response to meeting Joan of playing a song by Abigail Flowers. I did an aesthetic response of a drawing with crayons on the paper of the restaurant table. I thought about how she looked like a turtle in bed, under a green blanket, just her head with limp white hair sticking out and her eyes opening and closing slowly as she mumbled reluctantly and said a few things that didn’t make sense, but sounded like giving up and nothing matters. I just couldn’t argue or gaslight her or pretend like anything was ok. I couldn’t just sit there staring or try to make small talk or do anything like that. I know it would have made her cringe even before the dementia set in. It’s a reality of being alive in a body that is divorced from its own conscious mind but her soul is still in there…deeply sad, deeply disappointed, and utterly distraught. I completely understand all of those feelings. I am worried about ending up in the exact same place. I am a single adult woman in my late 40s who has never had children or a relationship that lasted more than a couple of years and that was more than 15 years ago. I don’t understand why this is my karma, but it is. I know I cannot predict what will happen, but it wears on me to keep faith in the possibility of finding the kind of love I desire after all this time of searching and bolstering hope.
Joan asked me years ago to be the executor of her will. She never imagined that she would lose her mind. Her will simply directed me to take care of her body by disposing of it in the least expensive way and with the least environmental impact. She told me anything left over was mine. The problem is that she never named a medical power of attorney or gave any directive should she lose her ability to safely care for herself. It has taken my dad hours upon hours and lots of money to hire lawyers and people across the country to help him manage her finances, sell her house, find her a facility to care for her, and then move her to a different place when all her financial resources where gone and her state medicare disability could kick in. It is and has been a big mess and she never would have wanted to be a burden like that to anyone.
One of the things that Peggy told me about that made the biggest impact was Joan’s love of turtles. Peggy told me that the only time she ever saw Joan cry or emotional was about turtles. If she ever heard that turtles were being mistreated, she lost it. I truly hope that the stuffed turtle I left her might bring her some comfort, but I have no idea if it will. It was more about me needing to feel like I was doing something to comfort her or help her in some way and feeling guilty for not visiting her more or being able to do anything more to help her. She is so alone. I think that I am the only person in our family and maybe at all who has gone to see her. And I have only gone twice. It touched me so much as we were talking about the day that Rain said her favorite part of the day was meeting Joan. She asked if she could go visit Joan on her own. I can’t express how much that means to me. I wish that I lived closer and that I could go more often, even just to bring things for the nurses and talk to Tracy.
I looked up descriptions of turtle medicine and got a feeling that Joan was too sensitive for this world in many ways. She needed her hard shell of sarcasm, gossip, spreading rumors, and bitterness that living in a small New England town further bred in her. She loved animals and took care of many people’s pets when they were away. She liked gardening and puttering around. I think she moved at a very slow pace was disappointed in many people and had some terrible things happen to her that she didn’t have the ability to process.
She was very suspicious of my degree in psychology. She said it was fuzzy and looked at me sideways when she came to my college graduation. But she came to see me graduate and that meant a lot. She went to Earlham College and maybe it was a sort of similar experience as Kenyon. She did tell Peggy that she was proud of me. And she was excited to go and fretted over what to wear. She chose a teal dress that I remember clearly and I think that was a great choice. I like to remember her that way in that teal dress at my graduation in the middle of Ohio.
I went to visit her in Maine a few times when I was younger. I always had a good time. We did wacky things like building a snow turtle. We walked through graveyards looking for tombstones with our names on them. Here Lies Abigail… Here Lies Joan…We saw a moose once on the road and I couldn’t believe how tall and enormous it was. We waited a long time just staring nervously at that moose before it finally walked off.
I remember knowing she didn’t like small talk and had no need to talk to me on the phone though couldn’t refuse when my parents said, “Do you want to talk to your niece?” I think she enjoyed spending time with me though. I think we had a good time. She taught me how to draw pictures on the computer in the early 80s, I created a book with her help. But then she became the biggest Luddite ever and refused to have an email account, internet, or a cell phone.
My response to Joan now is that she’s in there somewhere, but also not home. She’s no longer available.
I want to honor her in some way. Maybe I am by taking the time to write this and tell the part of the story that’s mine to tell. I pray to accept her as she is and love her as she is. Maybe that’s all anyone ever wanted. Sometimes it’s easier to not think about her though.
I feel she has/had a softness to her on the inside that very few people ever get to see. She protected herself well. So well that she disappeared inside her dementia. It’s just my projection, but that’s what I feel.
It feels terrible to say, but I pray for her to die so that her soul can be free.
Dear Higher Guidance,
Please help me process my feelings about and my experience of visiting Joan. Please help me live my life in a way that I do not end up like her. I know that we aren’t in control of our death. We aren’t able to predict or determine how we die or stay in control of our minds and bodies. Everyone has a different experience and goes about it a different way.
I do not want to live in fear or denial. I do not want to run away from life, community, or love. I want to be a cherished, valued member of the community. I want to bring love, brightness, and joy to the lives of others. I understand what it is to feel jaded, disappointed, and like nothing matters. I understand deep depression and not wanting to live. I just can’t argue with her prayer to die. I don’t know how I will feel when she does die if it is before me.
I had the idea of recording some stories to play with her. Maybe I still will. Maybe I can send them to Tracy and she might be able to play them for Joan. Is it vain that I am trying to be someone who makes a difference? Is it my own discomfort with thinking I might be someone in a facility unable to care for myself and not get any visitors and only be around others who can’t care for themselves and who are paid to take care of me?
My mantra lately has been “What will be will be.” I am only in control of what I can control. I can’t control anyone else. I feel compassion, inspiration, and fear. I don’t have much wisdom here. I feel cowardly that I can barely face her.
Turtles are ancient beings. They live so long.
What I can take away from my time with Joan is that I don’t want to be like her or have dementia. I want to take care of myself even better, listen to my soul even closer and do what I desire and live my life to the fullest or to the extent that I want to.
Do what I love. Do not go too deeply into disappointment with others who can’t or don’t want to show up in my life. Be grateful for those who do want to be with me and those who are my community and lean into the experiences I have and the incredible medicine opportunities that I have been offered and have sought out.
I am the medicine’s person. I wish that I could offer Joan some medicine. Maybe I did offer her my medicine and Rain’s medicine. Maybe just by being there and making a prayer for her life. Maybe that helped. Maybe I can send care packages to her nurses and thank them for caring for her. Maybe I can call Tracy and stay in touch with her.
Whatever I do, I do out of love and out of the joy of my heart. I love Joan. I love that grumpy bitch. What will be will be.