She never had any children of her own, and she was the 'cool aunt' for three different generations. She treated all her nieces like treasure, and I hold those memories near and dear to my heart. Although we lost her two years ago, the battle of losing her started many years before that - she began developing dementia when I was 15 years old, around the time her last living sister died. She lived with dementia for the last 7-8 years of her life. Our losses began with the short term memory - "Oh, did they come to visit me last week? Gosh, I can't remember." and eventually progressing to nearly no memory at all. She lost the ability to take care of herself entirely, and for the last few months, she rarely was awake during our visits. I saw a side of my mom during that time that I admired so much. My mom is very close with all her family, and I watched her help my aunt dress herself when she was needing a change of clothes after an accident, doing it in a way that allowed my aunt to maintain her dignity and feel loved and cared for. My mom would talk to her in her last months even if we weren't sure she could hear us or listen to us. She wiped her face when she was messy, changed her clothes, and talked to nurses about her concerns. My mom showed the kind of care that I never was brave enough to show.
Ever since I was little, I've known I wanted to work with kids. I've had changes in what that career looks like, but it's always been with kids. My sister loved visiting my aunt and hearing her stories. I had a really hard time. I hated the assisted living facility. I hated all the people just sitting there asleep in chairs, staring out the window, or asking questions that made no sense or merited no answers. It made me feel hopeless. I never want to work with older people, I would say. This is so sad. If kids are sick, they have hope to get better and live a long life. Older people... not as much. I would make excuses to not have to sit there on Sundays. It made me so sad, I was uncomfortable. I felt like I was watching my once lively and ornery aunt deteriorate before my eyes, and it tore my heart apart. More than that, it tore me apart that I wanted to badly to leave her because I was so uncomfortable. I would be filled with guilt and dread fighting each other for most of our visit.
Last week, I was assigned an evaluation for an older woman. I'm leaving out/changing a few details about her and her story, including her name and diagnosis, to protect her confidentiality. The physical therapist stopped me in the hallway prior to going in the room just to let me know about how she was doing, as she normally does. She reported that the woman wasn't able to do much. She would say "okay" and then not follow through with the commands. She told me she has Alzheimer's. I was a little nervous.
When I walked into the room, I was transported back three years when I would walk into Aldersgate to see my aunt. I greeted her by name and asked about her pain, and she mumbled something incomprehensible in response. I told her I was here to work with her. The way she spoke, her facial features, her body language, and even the way she was positioned in bed actually had me taking a few deep breaths to gather myself. I was SURE this wasn't my aunt, right? I asked her a few questions, and she was either unable to answer or gave me an answer that didn't match the question I asked. I felt stuck. I remembered doing this with my aunt. I hated it.
The woman (we'll call her Jean) eventually perked up a bit. I told her it snowed last night, she thought that was lovely. I told Jean we would sit at the side of the bed and look at the snow, and she thought this was a fine idea. I carefully adjusted a brace that needed to be on before we sat up, talking to her about what I was doing. I hated it when people touched or moved my aunt without talking to her about what they were doing. I noticed how many things came naturally to me with this woman that would have made me fear for my life when working with Bobbie, thanks to talking about Alzheimer's in OT school. I started a lot of sentence with "You were mentioning.... how is that going?" To try to get her to answer questions she otherwise wouldn't come up with on her own.
After we went to the bathroom, I asked Jean to brush her teeth for me, as I ask all clients on evaluation. She looked in the mirror at herself and commented about her messy hair. I asked her if she would like for me to brush it for her. "No", she replied "my mom did it for me this morning. I think it's okay." She would continue to make references throughout the session about how tonight she would have dinner at her grandparents house because it was Sunday. When I asked about her hobbies, she told me about her sewing, her cooking, her cleaning - she makes all her children's clothing. I watched how difficult it was for her to move her hands and fingers and wondered how many years ago it had to have been since that was true.
Jean and I spent the rest of our time together conversing and looking at the snow out the window. She gave me information that would have likely been accurate from her teens all the way to her 50's. As we were finishing up, I told her that I would take her down to the dining room for lunch, knowing that nursing was wanting to eat with her. She looked at me with a moderate amount of concern and said "I think I should be going soon. I really need to get home and make dinner for my kids."
Time froze for a moment as I remembered Bobbie telling me so many things about life that didn't make any sense. There's a certain point with Alzheimer's where they no longer know they have Alzheimer's. Once you hit that point, it does little good to correct someone's mistake - it deters conversation and it makes them feel bad about themselves. It is best, I'm learning, to be in whatever moment that they are. I learned that in school and with working with kids for so long, and it mostly pertained to pediatric patients. A 13 year old child with developmental delays may not be appropriate for his peer's activities - you need to meet him where he is. A child with sensory modulation disorder will be unable to function in a crowded therapy gym - he needs therapy that can meet him where he is. An adolescent who has suffered a below knee amputation on both legs two weeks ago may not be ready for my long list of ideas about the best ways to get in and out of the bathtub - I may need to sit with her and mourn the perceived loss of her freedom, independence, and ability to play sports as she once knew them. Many times with Bobbie, well into my 20's, I would answer questions that were no longer relevant - yes, I DID just get my driver's license and I am loving it. I kept a photo of myself from prom on my phone for several years after my high school graduation, because her brain was stuck there - I wanted to acknowledge her curiosity about whether I had a good time. Was my date cute? Please let her see a photo of my dress. Thanks to my aunt, I knew that the best response with Jean was not to tell her that she probably wouldn't be leaving today.
"I bet that will be delicious." I responded. "But it's only 11:30. You have plenty of time. We have really good food here, and lots of fun people to talk to. You should join us for lunch. We'd love to have you." She thought for a minute about my offer, looked at the clock, relaxed in her chair. "Well, I suppose that will be alright." We went to the dining room together and I got her a warm blanket for the draft. She was still looking outside at the snow when I turned to see a lady standing at the table. "Hi mom." The woman said. Suddenly, all was right in the world again. I saw Jean's eyes be overcome with familiarity for the first time during our session. They seemed to light up at the only thing that was familiar all day.
Aunt Bobbie, I know there are no memory deficits, no illnesses, and no confusion in heaven. Thank you so much for teaching me to be everything I am now that I wasn't able to be before you.
"Swing your arms when you walk, my love. That will make sure that your coconuts are always higher than your grass skirt." - Aunt Bobbie to me, when I was 9, wondering what kind of coconuts she was talking about.
