“The limits of my language mean the limits of my world.”Ludwig Wittgenstein
After ringing the doorbell, I try to wait patiently and mentally review what I need to do to survive this visit. Supporting my mom’s needs successfully is a delicate balance. Thankfully, she has a tell – her appearance usually tells me what kind of day to expect. So when she greeted me at the door, her hair neatly coiffed, makeup carefully applied, dressed in a bright blue blouse and her favourite jeans, I can’t help but feel relieved. “Good Morning, Mom!” I greet her cheerfully. “I brought you your favourite tea and some breakfast.”
My mom has Alzheimer’s. I wish I could say I handled her diagnosis well and supported her with grace from the start. I didn’t, not because I’m autistic, but that certainly didn’t help. Alzheimer’s is a life-changing event for the patient and the family. Like many Alzheimer’s sufferers, she was great at hiding her memory loss, as she feared the loss of her independence. Mom always has lived life on her terms. She is a strong, independent woman, a scholar, a feminist, lover of children and animals, an accomplished cook, a lover of a great joke and comedians, an environmentalist, a devoted gramma, and very likely an undiagnosed Autist. But gradually her ability to mask has left her. I am learning for the first time, at 49, who my mother is. There is no mask between us now.
But yesterday, my initial assessment was correct. She was lucid, her bright blue eyes sparkling, her dry humour sharp and she was in good spirits. It was clear she was glad to see me, and she loves it when I bring her tea. The hard part about visiting is my mom is usually so restless and agitated. She struggles to sit still, to relax. It’s painful to watch. She fusses constantly – trying to feed me or make me tea or tell me one of the stories about rural life when she was a girl. These things used to annoy me, but her fussing has become endearing. She recognizes me still, and that is a victory.
The plan for my visit yesterday was to downsize her kitchen. As big changes can cause a stress response that results in irritability, anger, and irrational behaviour I suggested that we do a little at a time and stop when she has had enough. That way neither one of us would get overwhelmed. It ended up being a good strategy. We organized all of her recipe clippings, cleaned 5 shelves and one drawer, and I washed the dishes and cutlery and returned them to their respective spots. It took about four hours…mostly because she was reading out the names of every recipe, and asking me if we had ever made it, was it good, should she keep it? She was pleased with our work at the end of the day, and I managed to help her recycle an entire bag of plastic bottles, removed a full bag of garbage, and took a small load to the thrift store for her when I left.
Most days with my mom don’t go as well as yesterday. My mom, like many Alzheimer’s sufferers is angry that she has this disease. She’s bitter at times because she is aware of her cognitive decline. She’s understandably frustrated. But sometimes it’s me…If I’m having a bad day I have learned it’s okay to delegate what I need to do with mom to another family member. It doesn’t make me a failure as her caregiver and both of us benefit from me taking a day off. On other days I find that meditating or exercising before visiting makes all the difference. I usually have to force myself to do it, but I always feel better afterwards. It gives me the patience and focus I need to avoid being reactive. I am then able to use the skills from my caregiving toolbox to deflect and address her emotions without it overwhelming me. “Do not engage” has become my mantra. Redirect, Distract. Deep Breathing, and Delay Your Answer (Think First) are all tools that help me and my mom. She is happier. So am I.
When I was learning about how Alzheimer’s progresses, it struck me how much her struggles resemble my own. As an Autist, change, especially ones without transitions, can shake my foundation, and it makes me feel like the ground I stand on is unstable. Over the years I have learned to adjust my routines on the fly. Likely that is due to working in customer care for most of my life. Typically change for me leads to major stress, anxiety and imposter syndrome. I am, however, skilled at keeping those side effects behind the mask. It affects no one other than me. But as a child I was far more rigid. I struggled with transitioning from one task to another. If someone interrupted my routine, it upset me, and my focus was difficult to reset. So I empathize with my mom, it is a brave new world for her. I’ve always believed she is also on the Spectrum – we are so much alike. And now I’m watching her try to cope with the world as her mask, her routines and her coping strategies disappear, and there isn’t a damn thing I can do about it. It’s no wonder she is restless. Change may shake my foundation, but it’s at least an 8 on the Richter scale for her.
Four years has passed since I first noticed small changes in my mom’s personality, and almost two years since her diagnosis. In many ways it has been a hard journey, and one for which we were unprepared. I left my job in 2018 due to caregiver/autistic burnout. I guess you really can’t be all things for all people. I know, because I tried.
It has taken me over a year to recover. I am not proud to say I resented having to leave my job because the stress of caregiving and a high-stress job pushed me into burnout. I resented my siblings for not helping me. I resented my husband and children having a life, despite their unwavering support. It was a big pity party for one.
Burnout crept up on me. I spent all of my days every day either at work or at my mom’s. I slept about four hours a day. After many months of sleep deprivation and stress, it hit me like a tsunami. I had no interest, no energy, no words. I became reclusive, avoidant. I stopped writing. I abandoned self-care and lived in yoga pants and t-shirts. The only time I left the house was to help mom. I made excuses to avoid going out with friends. I took time off work at the urging of my doctor, who initially diagnosed depression. But when I didn’t bounce back after three months of treatment and rest, we had to revisit my symptoms and reassess.
I thought burnout must be like depression, and there are similarities. It’s the intensity of it that’s different. With depression I can usually force myself to go through the motions, and pretend I’m okay. I’ve had a lot of practice. Burnout was totally different – no amount of rest helped. I was exhausted, and it took a long time to feel like myself again. Looking back, I feel like burnout for me at this time in my life was necessary. It forced me to evaluate what is truly important for me. To live my life on my terms. To focus on being okay with being me. I wouldn’t wish it on my worst enemy, but for me burnout was life-changing.
There is a part of me that is embarrassed, as a woman in her late 40s, to have hit burnout. To other people it must look like an extended temper tantrum of a spoiled child. I don’t offer apologies. Growth is painful for everyone, and even if it isn’t as obvious as my experience, everyone struggles. It is a part of life. I believe that part of the reason for my burnout – other than obvious self-care deficits – is the intensifying of my autistic traits as I age. I feel more and more like neurotypical people speak a language that was never shared with me. But I’m tired of being the one doing all of the accommodations. It’s hard being a round peg pounded into square hole. What that means is I have two choices, I have to advocate for accommodations, to help others speak my language. I’m thinking of expanding my caregiving to include other seniors, and run my own company. At least I’ll like the boss.
Mom called me tonight to chat and see if I could help her again on Wednesday with her cleaning. I’m impressed that she is asking for my help. She is learning that interdependence is not the same as losing her independence. It’s a big win. And she not only remembers our project, but she hasn’t shown signs of the usual irritability that comes with a change in her environment. I breathe a sigh of relief, and smile into my cell phone. The last two years have been especially frustrating with mom – she just didn’t speak my language anymore. I’m glad I’m learning hers, I know she has so much more to teach me, even if I know all her stories by heart.