One thing you should know about me is that my writing, mind, and life, are all a bit all over the map. Scattered. Like you never know what's coming next.
If you read this post through to the end, you will see what I mean. Then again, one thing I love about having my own blog is that I don't have to follow any stinkin rules. I hate rules. I know they are sometimes necessary, but I don't have to like them.
Okay. Here we go...
If you read this post through to the end, you will see what I mean. Then again, one thing I love about having my own blog is that I don't have to follow any stinkin rules. I hate rules. I know they are sometimes necessary, but I don't have to like them.
Okay. Here we go...
Over the weekend I felt a little bit of Summer Sadness starting to hang around like an uninvited cloud on an otherwise sunny day. (You can search my blog with the word "summer." There are years of triggering experiences that I've written about.)
I’ve been working like it's a paying job to offset depression of any kind over the past year. Job duties include:
- spending a lot more time on self-care
- going to therapy regularly
- putting myself on the top of my list (whereas I don't think I was even on it before)
- practicing yoga regularly
- saying NO to the things that I don't want to do and don't have to do
- traveling whenever possible (I have to be out of sight to get a day off from these folks)
I am happier than I was a year ago. It is important to note and celebrate progress. I want the Universe to know that I appreciate and want more of it. If I don't stop to give myself a little applause, who will?
I have pep talks with myself and sometimes with my girlfriend, and fellow mama blogger, Love Becca. I am determined to feel happier, free and thankful, but happiness is not a final destination for me. It's a choice that I work towards every day. I work to feel the way I want to feel instead of just going along with the way life's circumstances make me feel
I have pep talks with myself and sometimes with my girlfriend, and fellow mama blogger, Love Becca. I am determined to feel happier, free and thankful, but happiness is not a final destination for me. It's a choice that I work towards every day. I work to feel the way I want to feel instead of just going along with the way life's circumstances make me feel
One thing that definitely helped my happy meter earlier this month, was one of the best trips of my entire life. For our 25th Wedding Anniversary we went to Negril, Jamaica. It was incredible! We stayed in this little boutique property called the Rock House. We had a small little private villa (more like an individual cottage). For five heavenly days, the Carribean Sea was our front yard.
Waking up every, single day to this view, watching the sunsets, swimming and snorkeling in that clear, aqua, blue, water was to die for. As in, I could die tomorrow, and I would be happy that at least I had that experience.
(I think I said the same thing when I went to South France two years ago and put my feet in the Mediterranean, but whatever…)
(I think I said the same thing when I went to South France two years ago and put my feet in the Mediterranean, but whatever…)
The trip to Jamaica was both purposeful an intentional. There were other family happenings that were also important, like my both of my niece's graduations in California. I hated to miss them, but I chose to prioritize what was most important to me and what would make me happiest. Priortizing my happiness is something that I've neglected for a long time. The years of hiding behind fears and doing things just to make other's happy are over.
There’s nothing I love more than an ocean, total relaxation, and being away from my daily obligations. So that's what I chose. Besides, how often do people make it together for 25 years? Only the craziest people do. The occasion deserved a major celebration.
There’s nothing I love more than an ocean, total relaxation, and being away from my daily obligations. So that's what I chose. Besides, how often do people make it together for 25 years? Only the craziest people do. The occasion deserved a major celebration.
Oh, and by the way, the bonus was this is the first trip where I did not receive one-single-phone call from any of my inmates patients family members. This is huge progress because in the past, some piece of their world would almost always feel like it was falling apart if I was away.
The vacation is over, and just like my children, I am never ready for the party to end. I’m back home. Back to life. Back to reality.
When I’m here, it feels like I am constantly problem-solving. It's like every day I am working on a million-piece puzzle, trying to put the pieces together, but somehow, the puzzle only expands. Like it’s seriously growing from the exterior as I work on the interior. If I go pay attention to the exterior, the interior is suddenly missing more pieces.
Even when I am not actively sitting down at the table working on the puzzle, I am still trying to solve it in my head, all day, every day, and sometimes even when I’m sleeping.
The really sad thing is that these are not actually my problems. They are other people's problems that affect me because I help manage the lives of other adults.
Currently, caring for my mother has picked up the pace in a big way. Her mobility, mental health, and general attitude towards life have been taking a downward spiral. I have been working to put things in place to keep her afloat. I set up occupational and physical home-health therapy for her. We even hired a part-time personal attendant to help us at home so that I don't completely lose it. And yet, as the therapists continue to measure additional physical strength, her mental strength appears to be defeating the purpose.
A lot of it feels like her choice to give up (which really pisses me off). Like, if everyone would just do everything for her, she wouldn't have to put forth so much effort. Depression and anxiety have this tricky way of making you feel like you can't do anything and you don't want to do things. You have to be willing to fight the urge to shut down or you're screwed. She's screwed. Which ultimately, means I'm screwed, because she is right in the center of my house with a constant list of perpetual needs.
Figuring out what’s next in her life feels like a monumental task that I am currently handling, alone. Yes. She also has a son who lives in California (looks directly into the camera with the wtf face). So far everything is on me.
Figuring out what’s next in her life feels like a monumental task that I am currently handling, alone. Yes. She also has a son who lives in California (looks directly into the camera with the wtf face). So far everything is on me.
WTF Face |
I was just beginning to taste what a bit of freedom is like for the first time since becoming a mother. And mine was not a simple gig. A therapist once equated my experience raising my three boys, two with special needs, equivalent to raising six children! Years of compounded, ongoing, stress response and has made the amygdala in my brain hyper reactive. I've been diagnosed with PTSD. I have very little patience left and my stress response is disregulated.
I can't help but feel resentful. Especially, because I have already taken care of my mother for ten of the most difficult years of my life. She came to live with me temporarily, while I was knee deep raising the boys through adolescence and transition to adulthood. Life was so crazy, I hardly had time to think about what would be a better situation for my mother.
Now, I'm treading water, trying to maintain my own happiness and mental health, while watching my mother decline. It is depressing to watch. I can’t help but observe some of her behaviors and health issues and wonder about my own mortality and my own mental health as I continue to age.
I have this trumped up challenge with my mom and I’m not even done with boys yet. We all know parenting is never really over. And autism increases the probability of a job extension for life.
Every once in a while, one of my adult children will throw me a major curve ball to remind me that I'm not done yet.
(Like last week when one of them fell for a major league scam. He lost a substantial amount of money. I could write a whole blog about that, but the pieces of that story still have to be put back together. I couldn't stop and allow myself to get bogged down by this curve ball. At the same time, it triggered feelings of a lifetime of always waiting for another ball to drop. Hyper-vigilence, PTSD.)
(Like last week when one of them fell for a major league scam. He lost a substantial amount of money. I could write a whole blog about that, but the pieces of that story still have to be put back together. I couldn't stop and allow myself to get bogged down by this curve ball. At the same time, it triggered feelings of a lifetime of always waiting for another ball to drop. Hyper-vigilence, PTSD.)
The hits just keep on coming. I juggle the balls while dodging other balls to avoid getting hit in the face.
Last week I found myself Googling “caregiver burnout” because one of my doctors mentioned it to me. I scored pretty high.
Melinda Smith, M.A. wrote about the signs of caregiver burnout on Help Guide.org
- You have much less energy than you once had
- You’re constantly exhausted, even after sleeping or taking a break
- You neglect your own needs, either because you’re too busy or you don’t care anymore
- Your life revolves around caregiving, but it gives you little satisfaction
- You have trouble relaxing, even when help is available
- You’re increasingly impatient and irritable with the person you’re caring for
Check, check, check!
I 'm trying not to give in to depression, but I’m swimming upstream.
And that’s another thing...after Jamaica, I realize I could really use some swim lessons.
Inhale…
Exhale…
Namaste
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 122 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago