I love taking care of my grandpa, who I call Gung-Gung. I really, really love it. I wouldn't trade this precious time I'm getting with him for the world. But, caregiving is HARD work & it's even HARDER work for an autistic person, like myself. Let me tell you why. My Gung-Gung has to get a blood test once a month & it's my responsibility to take him. It's an important responsibility, but it also gives me precious time with him. I love that one Thursday a month. This past Thursday was Blood Test Thursday. Going With The Flow: When I arrived at my Gung-Gung's apartment complex last week, I was surprised to find that the visitor parking had completely disappeared. Autistic people, like myself, like to be prepared & don't like surprises, like this one. Not that anyone would like a surprise like this. It's just more of a problem for autistic people. My mom had recently told me that a notice went out that they were reducing the visitor parking & there were now only going to be three visitor parking spaces. (There used to be roughly double that.) But, signs that read Resident Parking Only were posted in equal intervals, in front of the old visitor parking spaces. That included one of the spaces that was supposedly still a visitor parking space. So, I opted to park on the street. I really don't like doing that, since it takes longer to get inside the building. Plus, getting the car to bring to my Gung-Gung who's waiting for me when I need to drive him somewhere takes longer. I don't want him to yell at me for taking too long, which does happen sometimes. When I asked my mom about the parking situation later on that night, she didn't know what I was talking about & said that that sign wasn't there yesterday. 🤷🏻♀️ Also, walking into my Gung-Gung's apartment, whether I'm there for scheduled caregiving duties or I'm there for a surprise visit, gives me heightened anxiety. I never know what I'm going to be walking into. This gives my mom, an allistic, or a non-autistic person anxiety, as well. But, for me, my anxiety about this is on a whole other level. Autistic people need to know what to expect; they don't like surprises. I personally feel like I need time to prepare for whatever situation is about to happen, but not knowing what I'm walking into doesn't allow me to do that. The following questions usually run through my head:
Anyways, we took the elevator downstairs, I ran to get the car as quickly as I could, & off to the blood test we went. The medical building we go for the blood test is right next door to my Gung-Gung's apartment complex, but due to his age & his physical abilities, it is still too far for him to walk. So, I drive. Putting Someone Else's Needs & Wants Ahead Of My Own: I had this idea in my head that I wanted my Gung-Gung to sit outside with me after his blood test. It was an absolutely gorgeous day & now that we are sadly into the month of September, these perfect days are getting to be more limited. I am someone who needs a lot of sunshine in order to function, so I take a vitamin D3 prescription year round. Plus, I shine a happy light on my face for about ten minutes before getting out of bed in the morning during the late-summer through the mid-spring months. Like many people living in this part of the country, I believe I struggle with seasonal affective disorder, although it’s never been diagnosed. Anyways, once my Gung-Gung's blood test was over, I told him that it was a beautiful day & asked him if he wanted to sit with me by the gazebo across the street before going back to his apartment. It's good for him to get fresh air, something he can’t do without accompaniment. It's much easier to convince him to sit outside if he's already outside rather than if he's inside his apartment. Plus, I was giving up time that I would normally be spending out on the back deck in the sun to take care of him. Much to my disappointment, especially since I knew it would likely be much colder when it is time for his October blood test, he didn't want to go to the gazebo. He told me he just wanted to go back to his apartment afterwards. Knowing that he would make a scene if I tried to convince him otherwise, I knew I had to take a step back & let him take the wheel. This is something that's difficult for anyone in the caregiver position, but it is even more difficult for an autistic person. However, he obviously changed his mind between the time we had this conversation & the time we left the medical building. When we left the building, he started heading straight for the gazebo even though I told him I would drive him there. We sat on a park bench in the gazebo park for a short while, side by side, him tapping his hand on my leg to a beat & me with my arm around his shoulders. This right here was my old Gung-Gung. This was what we did together ever since I was a young child, way before he had his devastating stroke. Although, I only started putting my arm around him when I got big enough to do that. 😉 These glimpses of my old Gung-Gung overwhelm me with so much warmth & happiness that it is hard for me to properly convey how I feel. I've always felt so safe, secure, protected, loved, & cared about when his arms were around me. While I still feel some of those same things today, despite him being disabled & me being all grown up, I feel so blessed to now be doing the same thing to him. Giving him the safety, the security, the protection, the love, & the care that he always gave me while also doing something that is good for him. Getting him some fresh air & sunshine. On another note, I wrote more about how being an autistic caregiver affects me in blog posts entitled My Experiences Being A Caregiver With Undiagnosed Autism & Strengths & Weaknesses Of Caregiving With Autism, if you'd like to read those prior blog posts. The Grief We Deal With:
When my Gung-Gung decided that it was time for us to go inside, we went in a nearby door & up the elevator to get to the enclosed bridge that leads to the building that he lives in. This walk is a little far for my Gung-Gung & his favorite sitting spot is on this bridge. So, this is where he likes to take a walking break. You get a perfect view of the nursing home associated with his apartment complex from this bridge. This nursing home was where my grandma, who I called Haw-Bu, passed away. So, he feels a closeness to her when he sits there & looks at the nursing home. He & I sat in two chairs by a window with a view of the nursing home & almost immediately, he was gesturing & asking why did she have to die before him. Why did she have to leave him here on Earth? He then bursted into tears & was sobbing for the love of his life of over sixty years. It's probably been over a year since I've seen him cry like this for his wife. I came around behind the chair he was sitting in & wrapped my arms around him in a loving & a comforting embrace until he was able to collect himself. Once he let me know he was okay, I sat back down in my chair again & wrote in big letters on my whiteboard Kim♥ Gung-Gung. When I showed it to him, he smiled at me with love in his eyes. I mostly communicate with him through simple, written language now, along with some gesturing. Because his stroke caused him to acquire a condition known as global aphasia, he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language, with the exception of simple phrases written on a whiteboard. It is easier for him to understand third-person language rather than first-person language. So, this was why I chose to use my first name rather than a pronoun when talking about myself. Is There Something Wrong With Me?: In times like this, I wonder if there is something wrong with me. When my Haw-Bu passed away, I never grieved. I never even shed a single tear. In fact, all of the sadness I experienced after her passing was caused by my Gung-Gung's sadness & grief. If it wasn't for him, I wouldn't have experienced any sadness at all. How is it possible that she was my grandma & I don't miss her? There have even been times where I have wondered what it was about my Haw-Bu that my Gung-Gung was attracted to. What did he love about her? Don't get me wrong, I'm so glad for their absolutely incredible love story, for without their love story, I wouldn't exist. But, I could never relate to my Haw-Bu & many of the interactions I had with her were beyond frustrating, leaving me feeling flustered & misunderstood. I spoke at my Haw-Bu's celebration of life that my family held after her passing, but I had a lot of trouble writing the words I was going to say to my family & to my grandparents' friends. Much of the reason I spoke had to do with the fact that my brother & my cousins were speaking, so I felt like I needed to speak also. I was my Haw-Bu's oldest grandchild, as well as her only granddaughter, after all. But, how do you speak about someone who you were supposed to have had a relationship with, but didn't? I feel so guilty that I feel this way. In the end, though, my speech did make it sound like my Haw-Bu & I had a very close relationship. Many of her friends came up to me afterwards & made comments about how great it was that I had such a close relationship with my Haw-Bu. I felt like I had just lied to almost everyone in that room though, which was crushing. One thing that differentiated my celebration of life speech from the speeches of my Haw-Bu's daughters & grandsons was my speech didn't mention cooking or food. At all. My Haw-Bu loved cooking & the way she showed love was by feeding you. Food wasn't my love language. In fact, the amount of time she spent in the kitchen & the fact that she was always trying to feed me was quite annoying. This was particularly frustrating because most of the time she tried to feed me, I didn't feel like eating & forcing myself to eat to make her happy was terribly painful. I eat food because I need to in order to continue to be alive. I don't eat food because I enjoy eating it, especially because I almost never have a good appetite. I know that this isn't how most people think about food. I've always felt that if my Haw-Bu had spent a lot less time in the kitchen during visits, I would've been able to have a relationship with her. For one of my brother's birthdays when he was younger, he asked our Haw-Bu to cook him & some of his friends a Chinese feast. I wouldn't have ever dreamed of doing such a thing because I always wished she would spend quality time with me, outside of the kitchen. I wanted this from the time I was young child until she passed away & I never got it. I wrote more about how grief affects me & other autistic people in my prior blog post entitled Autism & Grief, if you'd like to read that prior blog post. Conclusion: All in all, this past Thursday was a good day. Everything went almost perfectly. I was impressed by the number of people who walked past my Gung-Gung & me sitting on the bridge who said hello to him using his name. That meant all of those people know his name even though his language abilities are very limited. (I usually spend most of my time inside my Gung-Gung's apartment when I visit.) One of the things that made my Haw-Bu hesitant about moving here was that no one here would've known my Gung-Gung before he had his stroke. But, in a building like this, he's getting much more social interaction than he ever got in his stand alone house in California. In fact, I even explained that Gung-Gung means maternal grandfather in Chinese to one of my Gung-Gung's friends who walked by. This particular friend saw the whiteboard that was lying in my lap that read Kim♥ Gung-Gung & asked me what a Gung-Gung was.
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Grief is something that is certainly not fun to talk about, but it's part of life, & there were a couple difficult events involving my grandfather (he is doing okay!) that happened within the past few days that has me thinking about it more than usual. Just to give you a reference point, the five stages of grief are:
Those who are close to me know how incredibly important my maternal grandfather, who I lovingly call Gung-Gung, is to me. Ever since I was a little girl, he & I have had the most incredible, special bond. I love that man so, so, SO much. Back in January 2015, while on a cruise in Mexico, he had a major & devastating stroke. As a result, he acquired a condition known as global aphasia, which means that he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language of any kind. He also lost feeling on the entire right side of his body. Transition & Change:
Now, remember that grief doesn't only occur when someone dies. It also occurs when any major negative change happens in someone's life. For example, people may grieve when going through a divorce or heartbreak or if a close family member or friend moves away. I have been in the denial stage of grief for eight years & four months now (since that very day in January 2015 that the stroke occurred). Yes, as horrible as that is (it's even more terrible seeing it in writing than it has been thinking it in my head all of these years), that's the complete & honest truth. A Side-Note About Therapy: I had been seeing a therapist at the time that the stroke occurred. And I did tell my therapist how much I was struggling with my Gung-Gung's stroke, but I don't think she understood to what extent. I stopped going to therapy in the fall of that year, when I had to change to a different insurance plan that my therapist didn't accept. I haven't tried therapy again since, because my experience in therapy was that it either was extraordinarily harmful & detrimental to my mental health (the exact opposite thing that therapy is supposed to accomplish) or that it didn't make any difference at all, good OR bad. I had been through a plethora of therapists, all who, believe it or not, I wanted to strangle, before I found my last therapist who I really loved. Going through so many different therapists before finding the right one was incredibly emotionally & physically exhausting & draining & going through that multi-year process again, especially when I don't see the benefit in it is just not something I feel I have the energy or the drive for. I'll get more into my experience with therapy on another day. Now that I know I'm autistic, struggling this much with my Gung-Gung's stroke more than eight years later makes complete sense. Autistic people thrive on routine. However, transition & change are extremely difficult for us. That has to be why I'm still in the denial stage of grief this many years later. I just want my Gung-Gung to go back to being the person he was before his stroke. I mean, I know my mom wishes that too, but she has long accepted that this is her new reality, while I'm still denying that. Special Interests Particularly in autistic girls & women, special interests can be people or characters in novels or in movies. If an autistic person's special interest is a person, not only is the autistic person is going to be incredibly loyal to that person, but rejection will be particularly devastating, whether the person of interest is a friend, a romantic interest, etc. I didn't realize it until very recently, after I began learning more & more about how autism presents itself in girls & in women, but my Gung-Gung is one of my special interests. For me, this means that his presence & his mere existence in the world, & in my life takes precedence over everything else. The changes that occurred in him due to the severity of his stroke completely crushed me. And once he eventually passes away, that will shatter my entire world. The following statements are all true about my Gung-Gung:
When my grandma passed away a couple years ago, broken heart syndrome became one of my special interests. Unfortunately, I never had a relationship with my grandma, so I didn't grieve when she died. The hardest part about losing my grandma was thinking that her death would be what would kill my Gung-Gung, who I love so much. (My grandparents had an incredible love story.) I learned that the risk of a man dying of a broken heart goes down dramatically at the three-month mark, so once we hit three months, I felt an instant wave of relief. My aunt & uncle were visiting this past December & I had a heart-to-heart conversation with my aunt one night during that visit. My aunt brought up that when my Gung-Gung eventually does pass away, it really won't be that devastating because of how much he's changed since his stroke. I absolutely did not agree with her because the finality of death is so terrifying to me. Never feeling his arm around my shoulders; being able to hold his hand; or seeing my puppy, Ollie kiss him all over his face, bringing him so much joy & laughter is just not acceptable to me. It would absolutely devastate me & break my heart & wouldn't bring me any relief whatsoever. What my aunt expressed to me is how the average neurotypical person would feel, given the situation. But, what I'm expressing here is how one autistic woman feels, given that same situation. Being Literal-Minded Autistic people are literal-minded. Now, with that being said, I personally don't believe in God, in Heaven, or in any kind of afterlife. So, as morbid as that is to believe, I believe that when someone you love passes away, you'll never see that person ever again. The idea of God, Heaven, & an afterlife are just so abstract, foreign, & unbelievable in my mind that until I've actually seen proof that those things exist, I'm not going to believe in it. I know that those beliefs bring comfort to many people & I wish it did to me as well, but it just doesn't make sense in my literal mind. I know my Gung-Gung believes in Heaven & he wants to go up there to be with my grandma, the love of his life, again, but because I don't believe in it myself, I don't have the comfort he does. In fact, the idea of that actually makes me sick to my stomach. I am also someone who believes that the two things that should never be talked about are politics & religion, unless you know for sure that whoever you're talking to has the same beliefs as you. Because of the role my beliefs play in my fear of death, I thought this was important to mention, but at the same time, I want you to know that I completely understand & respect your beliefs, whatever they may be. So, I tried my very best to make this section as short & as to the point as possible. Fear Of The Unknown Autistic people like to know what to expect. In my thirty-something years of life, I have lost two grandparents & two pet bunnies. (Luckily, I have not lost any other loved ones.) I didn't grieve when either of my two late grandparents passed away. I believe that when my Gung-Gung passes, it will be the first time I would have ever grieved. And from what I know about myself & about my relationship with my Gung-Gung, I'm very worried about my ability to handle that grief. I hope that this post gave you valuable insight as to what grieving might feel like as an autistic woman. |
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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