Going With the Flow
I mentioned previously that it was amazing how quickly twelve caregivers connected with each other on our retreat last month. We shared our information and also now have a Facebook Group. It’s been fun getting to know each other even better online.
I made a special connection with one of the other attendees, Theresa Wilbanks. I’ve mentioned before that she had recently published a book and that I would probably be quoting from it in the future. Well today is the day!
Tracy and I traveled to Kansas this past weekend, which gave me plenty of reading time. Luckily, I can read in the car without getting carsick. It’s a great time to read because, well, what else am I going to do for seven hours? Reading makes the time pass quickly.
Theresa’s book is called, “Navigating the Caregiver River”. I enjoyed her writing style and how she compared her caregiving journey to being in a raft in the river. There were calm times, then rapids, swift water and waterfalls she didn’t see coming.
I have described my caregiving time as being on a rollercoaster ride. In my blog, “Side by Side”, I had this to say, “Those that know me personally know that I am not a huge fan of rollercoasters. They make me feel out of control. And I get that sinking feeling in my stomach. I am holding on for dear life. I close my eyes because I don’t want to see what is coming. When I get off, I am unsteady on my feet. I have to take several deep breaths.
Plus, I am afraid of heights.
I’m never the person that says, hey, let’s go ride that rollercoaster. I am only there because someone else asked me to be. I didn’t choose it.
Sometimes I describe my life as being on a rollercoaster ride. That is what it is like for me raising a child on the autism spectrum, with an intellectual/developmental disability, and suffering with mental illness.
So many ups, followed by so many downs. I can’t see around the corner, but I am whooshed there just the same. Sometimes I get that sinking feeling in my stomach. Sometimes it’s Tracy that gets it.
The moment you begin to relax and think this isn’t so bad, you’re whipped in a different direction. And off kilter again.
That is my life. Just when I start to feel like things are going smooth, the rollercoaster catches me off guard whips me around.”
I have also said that I was trying to learn to ride the wave. In my blog, “Riding the Wave” I define riding the wave as using mindfulness to help cope with urges when changing habits. Riding the wave is also a psychological practice of surfing your own powerful and negative emotions. A surfer doesn’t fight the ocean wave he moves with it. Fighting emotions such as sadness and anger delays the acceptance of these emotions. Like waves, your emotions might be calm and peaceful one moment and at another, rocky and unpredictable.
This year I have been writing about the work I have been doing on myself. My word for the year is healing. As part of my healing journey, I have been researching and writing quite a bit about self-care. I was suffering from a major case of burnout, mostly because I was not doing a good job taking care of myself.
In my blog, “It Takes What It Takes”, I write about a book that I had just read, “Tatoos on the Heart”, by Gregory Boyle. One of the themes of the book is acceptance. Another theme in the book is surrender. I mentioned that I had been working on both of these concepts with my therapist.
I can unturn the stones, but Travis needs to do the work. The bottom line is that it doesn’t matter if he is capable and unwilling or incapable. Either way, I can’t give him the desire to change his life. Travis’s mental illness may be stealing his desire, but I can’t fix it just the same. I’ve done my best and that is enough.
In that blog I wrote, Boyle says, “In 12-step recovery programs they often say, it takes what it takes. This is true enough when it comes to change. The lightbulb appears and it brightens, who can explain how or when? We can’t do this for each other. It is as simple as that. Change awaits us. What is decisive is our deciding.”
Travis has to decide when his life is going to get better. And do the work. Travis has to decide when to let go of his anger. And do the work. I need to surrender my need for results, outcomes, success.
Theresa’s book reinforced the exact concepts that I have been researching, writing and working on with my therapist. Theresa says, “Accepting our situation means we recognize that things will not always go according to our expectations. However, we can reframe those expectations. By relinquishing our attempt to control people, processes and outcomes, we regain our control when frustrations no longer have power over our emotions.”
Yes! Although I admit I am definitely still a work in progress.
Theresa goes on to say, “We have an opportunity to accept broken systems, broken people within systems, as well as friends and family that let us down. When we chart a new way forward, not just despite the disappointments, but because of them, we are navigating, and our path is meaningful, rewarding and sustainable.”
If you have been following our story, you know that I have come upon many obstacles around broken systems. And broken people within the systems.
Theresa says to accept the caregiver role. It will empower you. Acceptance provides relief.
For years I worked on unturning stones. I was certain that I was going to find some hidden secret to help Travis feel better. Is it possible that because I was so certain, he was too? Maybe he was counting on it.
Per Theresa, “Accepting our circumstances is like meeting ourselves where we are on the path and moving forward together in agreement rather than a part of you seeking an alternative route, an alternative reality.”
For me acceptance is not just about my role as a caregiver. It’s also about accepting that unturning stones hasn’t had the desired effect and that it is harder to find stones to unturn. I have to accept that Travis may already be the best version of Travis. For him to feel any better at this point, he will need to make the decision and do the work.
I have to be honest. The process of learning acceptance is working.
Theresa talks about the importance of setting boundaries in her book, she calls it respecting the riverbank. I love it!
As you know, I have been writing about boundaries as well. I have been setting boundaries with Travis around my availability. I have been trying to help Travis set boundaries with his friends. But Theresa opened my eyes to setting another boundary. She says, “We can set a boundary around worry and when we realize that our anxiety is not productive, it may be time to move to acceptance.”
Ok, so we all know that I am a worrier. And that I have been working on it. Like I’ve said before, it is easier said than done. But this is exactly where I am in my journey. Accepting that with Travis’s mental illness bad stuff is likely to happen. But now I am making preparations. Just in case. Like putting the Vitals app on his phone and having a long phone call with the sheriff’s department co-responder. Broadening “Team Travis” has been alleviating my worry. I feel like I am well on my way to acceptance.
I also respect boundaries regarding Travis. We have on several occasions been advised that we should put security cameras inside Travis’s home to track who is there and what they may be doing or taking. If I had the time necessary to watch recorded videos, I could just be there. I also don’t believe it is fair to Travis that we have that kind of access.
Theresa says, “I learned a bit too late that boundaries prevent burnout and that healthy boundaries help us maintain healthy relationships. Caregiver burnout occurs when we have given too much of ourselves.” I resemble that remark!
My problem is that I didn’t set boundaries in the beginning. Now Travis has an expectation that I will be available whenever he deems that he has a need.
In her book, Theresa says that boundaries will protect your compassion reserves. This is similar to what I write about. I talk about how being in nature, spending time with my family, snowmobiling or participating in some form of self-care fills my bucket. Setting boundaries will help keep the bucket from draining faster than I can fill it. During Covid my bucket was bone dry. Self-care was nonexistent.
Theresa writes, “We can’t be responsible for someone else’s happiness or contentment. If we find that our care recipient’s mood dictates our mood, it is a signal to revisit boundaries”. Very similar to what I wrote in my first blog of this year, “A Clean Slate”. I quoted Cathy Heller from her podcast. She said, “You are not responsible for everyone. It’s not your job to make everyone happy. Over giving and over functioning is self-abandonment.”
Theresa wrote about how she was confused about her inability to remain calm and disciplined as she had when she faced stressful encounters at work. I feel the same way. I was able to make hard decisions on a regular basis in the workplace. I handled the stress without emotion. Theresa writes, “With work that revolves around family, emotions are at the center of every decision, event and experience”.
Theresa writes about the importance of cultivating awareness through mindfulness. Being mindful is a subject that I hit upon often in my writing too. Theresa says in her book, “Mindfulness practice teaches our brain to disconnect from the worry cycle”.
From my blog, “Letting Go”; “I’ve been writing a lot about being mindful and living in the present. Not reliving the past and not worrying about the future. I was recently joking with a friend, but what if living in the present is also stressful?
I have been doing a lot of work on accepting what is. I have done everything I know to do to help Travis to feel better. I am learning to accept that I have done my best. I am working on not worrying about what the future may hold.
If I’m being honest, the day to day is really hard. Some days are harder than others.”
I am still controlled by my emotions at times. Work in progress people, work in progress! I have to admit that I haven’t seen my therapist in weeks. I showed her the picture of the room Travis was placed in for 30 hours in the ER. The picture is shown in my blog, “There Are No Words”. She looked at the picture and responded, “What did you think was going to happen?”
Well, not that. I had an immediate reaction to her comment, especially the tone of it. My feeling, that there are no words for how that particular ER is treating our most vulnerable didn’t reconcile with her comment. Her comment made me feel that as a professional in the business of helping patients with their psychiatric needs, she wasn’t surprised by the room or maybe even ok with it. And if that’s the case, is she still a good fit for me?
Theresa said during her first few years of caregiving she reacted when healthcare professionals were insensitive, or healthcare systems created rather than alleviated stress. She used the unjust situation as justification for decisions that weren’t in her best interest. Is that what I did, by not making my next appointment?
With meditation Theresa became more empowered and in control. She is clearly further along in the process than I am.
I was quite emotional when Travis’s psychiatrist said that he was uncertain that he would refill the new medications that the hospital put him on. I was angry that he hadn’t tried these medications with Travis in the past. It may have saved Travis years of undue suffering.
Travis did have his intake appointment with a new psychiatrist that seems like a better fit. Deep exhale.
Theresa writes, “As caregivers, we often have a legitimate list of people, events, systems and services that have failed us. The problem with resentment is that it eats away at us from the inside. Accept what has happened and decide to let the resentment and pain go.”
Too soon. I’m angry that I had to have a meltdown of my own to get Travis admitted to the hospital. At the same time, I am extremely grateful for the outcome.
I need to follow Theresa’s advice and stop reacting instinctively and without reflection.
Next Theresa focuses on self-care. She says, “When we struggle emotionally, our body suffers. Don’t I know it! She gives lots of great examples. I have written a lot about self-care this year. I have come a long way, but still have work to do.
From there Theresa writes about compassion and forgiveness. She says, “When we forgive ourselves, family members, systems and our care recipient, we free up our mind space for more positive and productive pursuits.”
Then she writes about releasing the emotions. In keeping with her theme, she calls it, “Waterfalls Lead to Rainbows”. Theresa says, “The act of sharing or venting is a release that makes you feel lighter and less burdened.” She goes on to say that journaling and venting, letting it out by writing or talking are strategies that help us release pressure and process our complicated emotions. We get to the planning state, shifting the focus from the worries to solutions is empowering.
Theresa talks about the importance of journaling. I have told you before, my blog is my journal. Theresa writes, “Writing offers a release and reprieve from the swirling sensations. It can help you capture the fun and funny moments. You will have a record of the experience, a travel journal that documents the caregiving journey. It will shine a light on the growth and how far you have traveled along the caregiver river. You will be able to look back at this time and remember what it felt like, what it looked like, how you spent your time. A record of this transformation will be a powerful reminder of your strength.”
Thank you for letting me vent. Thank you for all of your support. I have recently read over my blogs from the beginning. There is a definite transformation in me. In my goals. In my perspective. I am doing better. And in part, because of that, Travis is doing better.
Theresa states, “As I began to manage the experience with more confidence and agility, the river didn’t change, but how I navigated the river changed.”
I have definitely changed how I am navigating our journey.
Theresa found herself asking, “How can I make the best of this situation?” and “How can I help others who are struggling with similar challenges?”
It’s obvious why we hit it off right away. We are like two peas in a pod. This is what I wrote more than three and a half years ago in the About section on my Home page of my blog website, “Why write a blog? I have been through a lot of hard stuff in my life. But nothing as difficult as raising a child with special needs. Travis has been given countless diagnoses over the years. He was diagnosed with autism when he was eleven years old. He also suffers from chronic depression and anxiety. And he is angry and finds it difficult to manage his anger. I am writing this blog for a couple of reasons. My hope is that in sharing our stories, our successes and our failures, our wins and our losses, you the reader will come away with something. Maybe you can relate and you come upon some information that helps you through a personal situation. Maybe you do not have a child with special needs, but you walk away with a bigger heart. Maybe you already know me and you just get to know me better. And I am writing this blog at the strong encouragement of some special people in my life, my daughter and a couple of very close friends. They tell me that I am a good story teller. That I have a way of finding the humor in a situation even though it was the furthest thing from funny in the moment. Maybe writing this blog is part of my purpose. That you get something from reading it but I also get something from writing it. That maybe if I share it I don’t end up carrying the bulk of it alone.
Why read my blog? I do not have aspirations of having millions of followers and making millions of dollars. In all honesty I do not have a clue how any of that works. I have met many people on my journey. People that I have helped one at a time by sharing a story and an outcome. Our journey has been a long and winding road. Maybe in telling our story I will be able to straighten that path for one of you. Helping others makes me feel good. None of us knows how our stories end. But maybe we can build a community where we help each other get through what is happening now together. I am not an expert on children with special needs. I do not believe there is such a thing. If there was wouldn’t my son be well by now? Wouldn’t we have all the necessary answers? But I feel like I am the closest thing to an expert on Travis. You don’t even need to be a parent to enjoy this blog. I am sure we all have someone in our lives who has our heart and needs our voice.
My quotes for today’s blog are from Theresa’s book. Buy the book, if not for you, for a caregiver you know.
“Most humans are never really present in the now because unconsciously they believe that the next moment must be more important than this one. But then you miss your whole life, which is never not now.” - Eckhart Tolle
“Sometimes the obstacle is in the way, and sometimes the obstacle is the way. Is it stopping us or showing us which way to go?” - Ryan Holiday
“Practice love, compassion, and forgiveness. Anger is nothing but an anchor that keeps you from moving forward.” - Abby Fabiaschi