Taking Care- Personal Care Assistants, Care Taking and the Husband-Wife Relationship

November 29, 2010 at 2:09 pm | Posted in Around the House, Megan's Blogs, Ramblings, The Nitty-Gritty | 1 Comment
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Relaxing with the dogs.

Relaxing with the dogs.

We’ve received some inquiries recently about how I take care of Barton, which are great questions. But I thought this would be a good time to dispel some myths and open the discussion for care taking in a marriage. While we all like to think that our partnerships are 50/50% equal, most likely- they are not. And the balance on who is holding the weight fluctuates according to what is going on at the time. We each need different things at different points in our marriage (disability or not).

Every inter-ability marriage is different, so before sharing our perspective and experience, we want to be assured that in the end, you and your partner must find your own way that works for you.

In our relationship, it is essential that as much as possible Barton and I honor the husband-wife relationship as being separate from actual caretaking that he or I may need.

Certainly, Barton needs help in the morning bathing, dressing, basic hygiene, and we either find private personal care assistants, organizations or even friends to help fill this role. Over the years, Barton has had a number of personal care assistants, and he runs this process from interviewing, hiring, reviewing and in some cases firing assistants. It is an on-going process that must be maintained, and while it is not always easy, Barton values having someone other than me heading up this role.

We are also aware of the times when I do help Barton get up in the morning- how that affects my day- physically, time, and energy level. In addition, we have found that it very subtle ways it affects our connection as husband and wife, so we work very hard to keep me out of the sole care giving role.

Perhaps the bigger question is how we define care taking in a marriage. We would argue that there are many other forms of taking care of each other in our marriage.

Picking up dinner, running errands, grocery runs, bank deposits and other daily tasks is one area that when I am having a bad day or crazy week, Barton takes over- and I can’t tell you what a blessing it is. On a particularly difficult day, Barton emailed me a poem he had written, and I will say it was exactly what I needed at the time. Allowing myself to become vulnerable and fall into Barton’s arms is another. A reminder to do meditation or to take time out for ourselves so that we can find our center is also a vital part of care taking.

I am pulling out all of the things that Barton does for me, to take care of me because most people wouldn’t even consider it when they comment, “You are so good to have married him.” I want to say, “I am so blessed to have Barton,” but I know that explaining how or why will fall short.

Our methods and systems will shift, when we have a child someday, as we grow older, if something happened to me. But we will figure it out, in a way that honors the care taking we both need in our marriage.

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The Work We Do Together

September 12, 2010 at 3:30 pm | Posted in Megan's Blogs, Speaking Engagements | Leave a comment
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Barton and Megan before speaking at the People First Conference at jackson's Mill, WV.

Barton and Megan before speaking at the People First Conference at jackson's Mill, WV.

Last year, we traveled to Jackson’s Mill, West Virginia and spoke at a People Conference, sharing our personal story and discussing creating healthy relationships for individuals with disabilities. In the session before the end of the conference, there was a talk and discussion on relating abuse to people with disabilities. Over 80% of people with disabilities will experience some kind of abuse in their lives, and more often than naught, it will be from those they know- direct support staff, families or caretakers. Many people were open about sharing personal experiences about abuse or the crossing of boundaries by others.  

This year, we were excited to come back to the People First Conference and shed light on creating safety in the community and creating personal safe space. We also talked about when your safe space becomes unsafe, both the physical and emotional impact.

The next day, Barton and I taught basic awareness, empowerment and a few self-defense skills to 30 participants during the morning. We saw participants come alive, become engaged and open up to how they can apply these skills in their own lives.

Barton and I worked well together during the week, building and playing off of each other. It is a reminder to us that in addition to our individual goals and dreams, we have this work that we do together that is undeniably important. It cannot happen if it is just Barton or just myself- it is a reminder of our partnership, our marriage and our vision of reaching others.

Megan's artistic picture taking a break at the Conference at Jackson's Mill.

Megan's artistic picture taking a break at the Conference at Jackson's Mill.

 

We each bring components that others can relate to, whether it’s Barton’s experience using a wheelchair, mine as a female, or or our story of how we met and how we overcome adversity together. When we are able to come together and work in this way, incredible things happen. And others are able to see, in tangible ways, how step by step, they can do the same.

During the conference, we took a break and spent a few hours writing haiku, lying on the grass in a spacious field. While I kept feeling the tugs of many other projects I should be working on, Barton brought me back to the present moment, enjoying not only the conference itself, but also the time we spent together.

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In the Wake of Katrina’s Path

August 27, 2010 at 3:34 am | Posted in Megan's Blogs, Our Love Story, Ramblings, The Nitty-Gritty, Wild Stories You Just Wouldn't Believe | Leave a comment
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An Unusual Detour.

Though we didn't experience flooding by Katrina where we were in AL, Barton & I have been in storms where it has flooded.

 

Barton and I are huddled in the bathroom, his power wheelchair blocking the door. In the background, tornado sirens scream. Over the radio- the announcement that the EMS station lost power and they can’t tell us why the sirens are going off. The phone rings. Thinking it’s my grandfather who is two miles away and living alone, I answer. My father, stepmother and brother burst into Happy Birthday. Do I hang up? The epitome of irony…

Everyone in the South has their own Katrina story, where they where, if they were rescued, if they assisted in the rescue effort, in church praying for those who lost loved ones and homes, those on the ground volunteering in rescue camps or sorting through and handing out donated items.

I was already off work since Barton had a doctor’s appointment in Birmingham, and we had planned a night out on the town for my birthday. Instead, we drove back to Tuscaloosa with green and gray clouds swirling overhead, the news of New Orleans already blasting over the airwaves.

That night, we huddled in our safe spot, (not how I was expecting to spend my birthday) and when we ventured to the bedroom, I slept with boots on, just in case I needed to haul us out of there. Katrina was still a Category One, and there was a tree over the bedroom. I was praying that it wouldn’t fall, not only for our sake, but so that we could sell the house as we planned! We were lucky and sustained only minor wind damage, but several houses in our neighborhood did have trees down.

Two weeks earlier, Barton found out that instead of moving to North Carolina that October, we would be moving on September 1st. Unprepared for the quick turn-around, I was scrambling to sort through items in my mother’s house, prepare the house for sale, and getting us squared away in North Carolina while wrestling the arrangements for resigning from my work (as we needed health insurance for as long as possible). We decided that Barton would move on September 1st, and I would stay behind for a week.

On August 31st, I was pulled into meetings about the rescue effort, when I knew the next day I would be resigning from my job. It was a difficult moment to tell the CEO that I could not participate in publicity for relief effort. Barton moved up to NC, and I was left to fend for myself. The days following would be harrowing- news of the gas lines lead to gas siphoning, gas price gouging- I would drive down the street to get a rationed two gallons at $4.75 a gallon, and the emptying out of grocery stores. Other than the grocery store and gas stations, the streets were empty, and you could feel tension in the community rising. While it was nothing like New Orleans, I learned a lot about what happens, when as a community, we are all in panic mode. I was lucky- I was kept from watching those horrifying images over the television by the overflowing list of things to do.

While we only lost power for two days, my grandfather didn’t get power back for over a week. Though he was stubborn and wanted no help, I would take a cooler with fresh food for the day, cleaned out his freezer and leave flashlights and candles on the counter when I left. I sorted and packed items for the move and worked hard to repair the house. I made a huge donation pile for hurricane relief. (Later I would realize that a box of our childhood toys had accidentally made it into that donation & am thankful they were put to use). And I still worked, over my eight hours a day, to prepare for my exodus of seven years working in corporate advertising.

The hardest part was moving. At a time where everyone was huddling together, working and volunteering, we were leaving to go to a place where we could better sustain our family. I didn’t see or say good-bye to many of my friends until we actually sold my mother’s house six months later.

But Katrina isn’t just about remembering what happened, it’s about how we live now. Are we prepared for another natural or unnatural disaster? Really? One film called On Higher Ground talks about emergency preparedness for those with disabilities and their direct support professionals. While we have made long strides, there is still much work to be done.

Katrina made us think about what would we have done, we went through scenario after scenario- what if Barton couldn’t get the medicine he needed, what if we had to leave without his wheelchair (either of them), what if we had to rescue the neighbors (what would our different roles & procedures be), what if we couldn’t get food, what if I couldn’t get to NC? Trust me, we talked about & had a plan for everything we could think of, and some of those conversations were difficult to talk through.

Even when we moved into the new house, we asked- how could I get Barton out of the house if there was a fire blocking the exits…While the “what ifs” can drive you crazy, it’s important to know how to take care of yourself & how to take care of others.

As we approach the 5th anniversary of Katrina, we are reminded that the people around us are precious, that anything can happen, and to take steps to prepare for an emergency beyond our control.

Check out some resources to create your own emergency plan:

http://www.dotcr.ost.dot.gov/asp/emergencyprep.asp

http://www.ready.gov/america/getakit/disabled.html

http://www.fema.gov/plan/prepare/specialplans.shtm

http://www.disabilitypreparedness.gov/

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Misconceptions that Hit to the Core

June 16, 2010 at 10:11 am | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty | 1 Comment
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Barton and Megan break down social misconceptions.

This week I had a conversation with a friend, but I was struck by misconceptions that hit to the core. As both Barton & I are in the midst of job transitions, this summer we are cutting back, everything that we can. At the moment we cut out morning help, something that we don’t normally like doing because it shifts our roles. But because of how expensive it is, we had to cut back. My friend responded by talking about how she understood, she took care of her family, and it’s like taking care of a baby, but a big baby. What? Are you serious? Really?

This comment floored me- absolutely floored me. Now my response was quite defensive, and if I had been paying attention I would have pointed out how sad it was that she was not able to see beyond the actual issue. Of course, instead I went on to defending my husband.

Yes, as we grow older, we lose our memories, our capacity to take care of ourselves, to be independent. Many of us take care of parents and grandparents as they grow older or transition into a state that is more child like. But this misconception hit to the core that Barton was a big baby because he had a disability and needed additional help.

Barton is an independent man, husband, coach, teacher, poet. His heart and service is invaluable and he has worked his butt off to get where he is. He doesn’t like relying on others, not even me, and works hard to be as independent as possible. He provides an example for others to open the space for them to see that they too can live fulfilling, independent lives.

Looking at those with disabilities as being babies is dehumanizing, demoralizing and strips them of any value or worth. It’s easier to think those with disabilities have no value in the community whatsoever where we could put someone in an institution or dismiss them altogether.

Often people tell me that I am so good to have married Barton, as if Barton had no say. Do they not know that he was the one to asked me to marry him? I am so privileged that he chose me, especially since it’s common that women swoon over his bright blue eyes and smile.

Would she have believed me if I had talked about how much Barton does to take care of me? I doubt it. Many people don’t see the ways in which Barton takes care of his family, work, service. They only see what they want to see, and often times, miss the heart that is right in front of them.

Later when I talked about adoption & fundraising we were doing for accessible equipment, she quickly assumed we would be adopting a special needs child because I was talking about accessible equipment. Her shock that Barton could take care of a child was clear. Again, the misconception that Barton could never be a father or take care of a child even though he’s in a wheelchair or has a developmental disability.

So much work is being done to negate these misconceptions, and just in the time Barton and I have been together, we constantly push beyond the barrier that people place around him, around us together as a married couple.

Yes, right now it is tough- it is tough for everyone hit by the economic turbulence. And we aren’t immune to that. But it does not mean that we can dismiss those with disabilities or devalue their contribution to our community.


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When the support isn’t supportive

October 14, 2009 at 8:27 pm | Posted in Barton's Blogs, The Nitty-Gritty | Leave a comment
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Yesterday, as Megan said in her post, we had to let go of my morning help.  While on one hand this was extremely difficult for me as we had been without help in the mornings for over a year, it became apparent that there was a clear disconnection between my needs and her understanding of this situation. 

As a person with a disability, I have a strong conviction that I was put here in this form to help teach.  Moreover in situations where I require the support of others, I expect that at a very fundamental level that they will enhance, in one way or another, the relationship or task at hand.   Much of what I attempt to do, in every interaction, is to provide an example of  inspiration despite any physical limitations.  In my own experience, this comes from a strong determination to do what I believe to be right in any given circumstance.  Often this involves great patience, deep faith, and the ability to act on the need of others at that time.  Most of the time I have found that people  respond favorably with a willingness to learn and grow from our encounter.  Yet in this particular situation this was not the case.

While I do rely on the support of others to perform certain physical functions, this in no way lessens who I am as a human being or as a man.  So what happened when someone who is supposed to support me does not view me as a whole and capable human being?  I understand that because of her training as a nurse she had a very clear understanding of what was required to get the job done.  However, as often happens in nursing homes or other atmospheres where human dignity is compromised, there was, from our perspective, a resistance to acknowledging that I was capable of asking for what I needed in the way that was most appropriate to my situation. 

I found that in this situation I gained a unique perspective on what happens to people living in nursing homes and institutions who lose their passion for life.  I found that after several times of asking for things in the way I needed them done I soon quit asking as I realized that my attempts were nothing more than wasted breath.  This lack of respect began to impact the way I viewed my decision making ability.  At the same time she  continually placed Megan in the position of sole decision maker which over time began to erode  the balance in our relationship. 

While  both Megan and I had attempted to address the situation with her, both as a couple and individually,  our attempts did not prove helpful in changing the circumstances. As you might guess, the emerging patterns and behavior that  I noticed in myself as well as in my relationship to my family were in drastic opposition to the way I choose to live my life. 

It was for this reason and this reason alone that Megan and I chose to let her go.  Interestingly  in the past 36 hours or so, Megan and I have felt more aligned than we have in months and it has felt incredible.


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When Help Just isn’t Working: Letting Go Our Personal Care Assistant

October 13, 2009 at 8:44 pm | Posted in Around the House, Megan's Blogs, Ramblings, The Nitty-Gritty | Leave a comment
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Barton and Megan in the gardens at Cambridge, UK.

Barton and Megan in the gardens at Cambridge, UK.

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!


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Shifting Attitudes: Perspectives of Personal Assistants

August 27, 2009 at 4:47 pm | Posted in Megan's Blogs, Ramblings, The Nitty-Gritty | Leave a comment
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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.

Barton Published an OpEdPiece, published in Raleigh’s News & Observer about how personal care assistants are often devalued in their work.  


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