When Help Just isn’t Working: Letting Go Our Personal Care Assistant
October 13, 2009 at 8:44 pm | In Around the House, Ramblings, The Nitty-Gritty | Leave a CommentTags: daily living, disability and marriage, disability and relationships, disability self advocacy, household chores, Megan Cutter, personal assistants, personal care assistants, self advocacy
So today was not a fun day. We had to have a discussion with Barton’s morning personal care assistant, and in the end, we parted ways. It’s a bittersweet decision because we had worked so hard to get morning help to begin with, but we found that some underlying issues to be too detrimental to our household to continue.
Since being with Barton, we have only had to let go of help maybe two times. The first was a little more light-hearted since we had hired a student from the University who couldn’t get out of bed until 11am in the morning. The final straw was the beans incident. In a condensed version, I came home to a sink brimming with black murky water and the overpowering smell of Draino. A few days earlier, he had made Barton not one helping of black beans, but the whole bag of black beans. Yes, it was my mistake to be running late for lunch, leaving the container of beans on the counter. Apparently, Barton’s assistant dumped the entire pound of black beans into the garbage disposal. Now, what do you think happens to beans and water in a drainpipe? Just a note, if you try this at home, we are not responsible for the repair to your own drainpipes. Then, to “fix” the clogged pipes, he poured a whole bottle of Draino in the sink, and I’m wondering if it was just for spite, he turned the dishwasher on before he left!
Today’s discussion was a bit more on the serious, and we realized there were some subtle underlying issues that began to create a rift. We had finally found someone who had been in the field for a long time, and was experienced in a hospital, group home and residential home settings. We walked through the normal questions and a modeled the routine of the day. She was on one train of thought, with a specific type of care for Barton, usually working with someone that has a care provider.
But how do you integrate that work into the household that includes both of us, especially when we are working to break down the notion that I am Barton’s care provider? On the first day, Barton was so excited because he wanted to make me breakfast, but was told she was there only to take care of him. How could he communicate that there were things he wanted to do to take care of the household or me, as his wife, but needed some extra assistance in doing so? While we didn’t specifically address the times when Barton would want to include helping me with the household chores, we found the personal care assistant to be inflexible at even the smallest request. Barton tried to explain that I was his wife, not his mother or caretaker, and while the acknowledgement was there, the action didn’t really change.
Not only that, but Barton was feeling more and more like he was losing his voice about how he wanted things done, and that frustrated him because we were in our house. He likes is showers short in a particular way, and like most guys, hate it when other people dote on him. However, his assistant had a particular way as well, and they didn’t quite jive. At the same time, my best writing comes out in the morning, but getting interrupted to get this or that, I was quickly losing focus. I almost felt like I needed to leave our house just to get one thing accomplished. And we didn’t realize how we missed eating breakfast together- it was an important part of starting off the day.
Slowly, I noticed Barton was getting irritated and I was getting frustrated, and pretty soon, the rift was large enough for us to see. I am sure that from a personal care assistant’s perspective, it’s difficult to work with a married couple because the lines blur between working for the individual and working for the couple.
There aren’t any simple answers. Only the ones that come with trial and error, experience, communication, learning, and we’re still just rolling along in that process!
Rediscovering the Fire
October 4, 2009 at 6:41 pm | In Speaking Engagements, Work | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, Megan Cutter, Speaking Engagements, vision, Work
This past weekend, we’ve been at Coach Training Institute (CTI) Fundamentals, a workshop to learn, play with and practice personal and business coaching. We found out about CTI through our own personal coach, Phil Okrend with Stepping Stones Coaching, and through the course of the year, Barton found that coaching and mentoring is a part of what he does naturally, and wanted to explore expanding upon his skills and tools, integrating coaching more fully into his work.
When we first called to register and asked questions about if it would be all right if I came as Barton’s assistant, we actually could feel the fear through the phone lines. It was clear no one had asked the question before. And the administrator was clearly questioning. Could someone with a disability be a life coach? From this individual’s doubt, we then actually began to question if it was the right place and the right path. We were encouraged to sign up for the first class, but to wait to see if it was the right fit before registering for further workshops. I can’t tell you how thankful I am that we persevered through that process- this training was clearly where Barton needed to be.
Throughout the weekend, I saw the excitement and inspiration return to Barton’s eyes. He was on fire. He had found this space that encouraged and inspired him, pushed him further into new areas, redefining and introduced him to new skills, and a foundation and framework to work within. As one of the instructors said, he had come home.
The first day, I translated quite a bit, especially when Barton spoke within the large group or one-on-one practice sessions because it was difficult to hear with background noise. Slowly over the course of the weekend, I backed off more and more, and there was a more direct connection. By Sunday, I was able to fully let go, stepping out for the majority of the day.
What was so interesting was that I was working on my own stuff throughout the weekend. For example, I am on Barton’s line of thought so much, I tend to finish his sentences, which can be cute until I overstep my bounds and not let Barton finish talking (I can do this quite a bit). During one of the practice sessions, I could feel the energy rise to my throat and get stuck there, because I wanted to speak for Barton. I began to breathe, allowing the energy to come back down, and allow myself to be guided by Barton telling me when I needed to translate and when I needed to back off. And Sunday morning when I was working on a project in the hotel room, I also had to let go of the thoughts running through my head- will people understand Barton? Do I need to be there? Of course, he’s fine- he’s Barton! I don’t need to be there. There was so much freedom in fully letting go, and I know this was true for Barton as well.
What a privilege it was to be a part of this weekend, and I’m excited to see where things will go, what will be ignited from this process.
Conversations With my Father
September 28, 2009 at 11:22 am | In Our Love Story, Ramblings | Leave a CommentMy father came up to Raleigh for a visit this weekend, and you might wonder, what’s so important about that? The relationship with my father has changed significantly over the past few years, though because of limiting travel over the last few years, we haven’t seen each other as much.
I remember being so nervous about what my father would think of Barton. Of course Barton and I had to do things backwards- we didn’t mean to, but neither one of us really mentioned the other one of us to our families. So on Thanksgiving Day in 2003, when we called our families to tell them we were engaged, all of our parents asked, “To Who?”
I had just been through several years of trauma, from both the break up of an engagement to a so-called high-school sweetheart (thank God I didn’t get married then!) and my mother’s death. Needless to say, my father was a bit shocked.
The first time my father and Barton met was up in Washington DC at a martial arts training seminar. Barton wanted to do the respectable thing and asked him for our blessing, but my father didn’t know Barton, and so he told Barton he couldn’t support us, though he knew we would do what we wanted. We had a lot of catching up to do. I remember a conversation with my father and stepmother about trying to explain how Barton and I were planning on getting married. What’s funny is that both Barton and I have said if we ever have a daughter and she does that, her fiancé might face more than just a few questions.
My father was obviously concerned that I would become Barton’s caretaker, and it was at a cousin’s wedding that he was able to see us in a more intimate setting. Since then, we’ve shown how in taking steps and risks that we have, like moving to North Carolina, it has enabled us to be in the position we need to sustain and take care of our family.
Not only that, but last year I traveled down to Atlanta, dad and I had a wonderful discussion healing many of the past hurts, the effects of my mother and father’s divorce when I was three & the aftermath of switching houses nearly every day. My father was able to see how much my life has changed (for the better), and I was able to see his presence in my life.
Before my father left on this Sunday, Barton was asking questions about how dad set up his private psychology practice- scheduling, building the practice, best practice questions because Barton has found that he would like to be able to coach and mentor youth and their families in addition to his current work.
What a wonderful dialogue to have, and I realized there was quite a bit I didn’t know about how my father, how he set up his practice and work in his life that I wasn’t able to be open to or hear before. Not only that, but my father really acknowledged the work I was doing in addition to giving some advice to Barton as well. What an amazing gift this weekend!
Shifting Attitudes: Perspectives of Personal Assistants
August 27, 2009 at 4:47 pm | In Ramblings, The Nitty-Gritty | Leave a CommentTags: daily living, disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, Megan Cutter, personal assistants, personal care assistants
We’ve just started with a new personal assistant in the morning for Barton. It’s great because some of my best writing flows before 8am, and it’s been a busy week, so there’s been a lot to do in the morning. I don’t have to worry about getting both of us ready for the day- I can go ahead with my schedule without worrying about what Barton needs. Being a married couple and adding a personal assistant in the mix can be quite a challenge. It’s can be a little weird, rolling out of bed to let someone into your house at 6am- it’s a pretty vulnerable position to be in, for both of us.
We noticed something interesting, though. Last week, Barton’s personal assistant began asking questions- how did Barton eat lunch, was he okay at home alone, how did he use the bathroom during the day, what agency/program (SDD) did he use, what did he do while I was gone all day. It wasn’t so much the questions, because we are so open and would gladly answer them, but the attitude behind them. While Barton told her he had a full-time contract and worked, she didn’t really believe him. (There we go again, bursting illusionary- bubbles).
Not only that, but his personal assistant began asking me questions- the same ones as well as some others. Not realizing that Barton has already told her, my answers matched his- although looking back later, I realized how I should have just deferred the questions back to Barton since they weren’t really mine to answer. Both Barton and I felt devalued, not just as individuals but as a married couple. As a man, and as a husband, he felt his assistant judging and mothering both of us.
For example, if Barton doesn’t want to eat lunch, he doesn’t eat lunch. He can make his own decisions. Now I can do the wife-nagging bit, but I’ve learned it doesn’t work very well with Barton- it really only pisses him off. So I’ve learned to back off & let him handle it. And if he needs help during the day, he has gotten to know neighbors in our community or figures out how to get the assistance he needs. And I trust Barton, in guiding our family with the decisions that he makes, like when we moved to North Carolina.
This morning, Barton spoke with his personal assistant about his feelings, pretty openly, and amazingly, she was open enough to listen when he told her I wasn’t his mother, I was his wife. We don’t know if her attitude will shift, but I felt Barton become more empowered by addressing these issues head-on, and I felt her attitude shift as she heard him and she spoke about him being an inspiration to live so independently. There’s not a day that goes by where we aren’t learning how to shift perspectives, in others, in each other and in ourselves.
Walking Down the Aisle
August 17, 2009 at 2:00 am | In Our Love Story | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, love, love story, Megan Cutter
When people ask us about our wedding, Barton & I look at each other, and our faces light up. I remember before we walked into the church, my father’s advice to be present and remember each moment of the ceremony, and I do remember Barton’s incredible smile beaming down the aisle as we approached.
I knew that Barton was planning to walk us out of the church after the ceremony, and that this was the first time his family had seen Barton stand and walk publicly. At the dress rehearsal, it was the first time we had tried walking down the ramp together, and we had slipped on the surface.
Barton stood for over an hour during the ceremony, and the ceremony was truly unique. We even had a special way that Barton could slip the ring on my ringer; rings that a friend & jeweler custom made for us. I remember when we saw our rings before they were crafted and polished, the process of alchemy was truly at work. We had written our own vows, and we had homemade bread and wine for the Eucharist, made by dear friends of ours.
As we set up to walk out of the church, I remember holding onto his arm to go down the ramp. At the bottom of the ramp, we looked at each other with the delight of “We actually made it!”
To have Barton walk me out of the church was one of the most blessed moments of our ceremony.
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