A Good Morning?

As I start typing this, it is 7:31 AM on a Thursday. I have only been awake for an hour and a half, but already I feel like I have worked a full day. Some days, it’s like that when you use Consumer Directed Personal Assistance (CDPA) or self-directed home care.

In CDPA, I am the “CEO of me” and I am in charge of personnel. I recruit, train, supervise and manage the home care workers (Personal Assistants or PAs) who work for me. A business called a Fiscal Intermediary is responsible for the administrative paperwork and payroll required so my PAs get paid. In New York, where I live, I choose my Fiscal Intermediary. I happen to be employed by the Fiscal Intermediary I chose, Consumer Directed Choices.

It’s difficult to explain to nondisabled people who don’t use CDPA how intimate personal care is. Personal care creates a codependency in which both parties, the care recipient and the caregiver, rely on each other for a variety of reasons. I cannot function without the women I employ. They cannot function without the wages they earn from their work. We are tied together by complimenting needs, but we have developed relationships over time which go beyond typical employer/employee constraints. And for me, the most important member of my care team is the morning PA.

Today started like most mornings. My alarm buzzed. I shut it off and took stock of my surroundings. I heard Tina, my morning PA, in the bathroom. I smelled coffee. So far, so good.

As soon as Tina came into my bedroom, I knew something was wrong. Her energy was flat and she was not her usual upbeat, positive self. I could tell she was not feeling well and knew this would impact my morning. Tina and I have worked together for seven years now, so it is easy for me to gauge how she is feeling with just a look. She is the first person I see most days and normally makes my transition from sleep to work an easy one. We can anticipate each others movements and know how to make the morning routine go smoothly.

So today I was not surprised when she looked at me and said, “You OK for a minute Dee?” before running to the bathroom as I nodded. Tina was sick and I was going to have to change my routine before even getting out of bed.

This is what happens when you rely on other people. At least this is what happens to me.

When one of my PAs is sick or unable to work, I instantly go into problem solving mode. This level of executive functioning is necessary for me to be able to juggle my own bodily function needs while still balancing the need to show up for my job as my employer expects. The thoughts that filtered through my head this morning went something like this:

Is Tina too sick to at least get me out of bed? Is a shower out of the question? If I send her home, is there anyone else I could call to finish her shift? What is absolutely required for me to be able to function today?

Thankfully Tina was able to help me get out of bed. However, it soon became apparent she was too ill to continue her shift. Then the questions in my head shifted:

Is there anyone else I could call to help me use the toilet? If I don’t shower this morning, when can I shower? What time is my first meeting today? Am I on camera? If Esther helps me use the toilet after her shift at her other job, would I need to reschedule any work meetings?

I sent Tina home after she helped me put on a clean shirt (at least I will be presentable on camera!). I left a message for Esther and turned on my computer. I said a prayer of gratitude – at least I’m out of bed drinking a cup of coffee!

I logged onto my work computer to check email. My body started sending me signals that waiting for Esther wouldn’t be possible. I opened my contact list and started scrolling. The questions began again:

Who is relatively close and could spare an hour to help me use the toilet? Sally can’t make it before she has to be to work. Brooke has class this morning. Margaret never responded the last time I was looking for someone so is it even worth asking her? Maybe Sandy hasn’t left home yet and has time to stop on her way to work.

Thankfully, I caught my sister Sandy just as she was getting ready to leave home. She didn’t need to be at the office today until 10 AM. She had time to stop over and help me use the toilet. It was time for a quick gratitude list:

  • I’m up and out of bed.
  • I have coffee.
  • The internet is working.
  • I am able to work from home so it doesn’t matter if I am only dressed from the waist up (Guess what? I’m only dressed from the waist up today!).
  • And I’m getting a quick visit from my sister.

Now it is 8:15 AM and Sandy just got here. It’s going to be a good morning after all.

The Importance of Self-Compassion

This post is part of the 1000 Voices Speak for Compassion movement. On the 20th of every month, over 1000 bloggers feature posts related to compassion. I did not participate in March because I was traveling. This month, I am happy to return to lending my voice to those sharing posts related to this month’s topic: Nurturing

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During the month of April, I have attended several seminars and conferences for  caregivers. These events, often organized by community organizations or agencies which support caregivers, are important as they connect the community with available supports.

Most people have served as a caregiver at some time in their life. If you have not, just give it time and I’m sure you will be called upon to step into this vital role.

In the United States, the National Alliance for Caregiving is a non-profit coalition of national organizations which focuses on advocacy and research to advance family caregiving. Every five years, in partnership with AARP, they publish a study on family caregiving in the United States. The 2015 results will be released in June of this year. The most recent data available on their website are from the 2009 study. According to that survey, in the United States most caregivers are female (66 percent), and typically provide care for a relative. Fourteen percent (or 1 in 7) of caregivers provide care over and above regular parenting to a child with a disability. Seven out of ten caregivers provide care to someone over age 50. The average caregiver provides 20 hours of care each week. You can read the full report of the 2009 survey here.

In my personal and professional life I have learned caregivers need support managing their own health and stress, in addition to help caring for a loved one. No single person can be the sole provider for another. Nobody can “go it alone” for very long without caregiver burnout.

What is caregiver burnout? I heard it described Saturday by a representative from the local chapter of the Alzheimer’s Association as, “the physical, emotional and mental fatigue caused by doing or taking on more than you can handle in a caregiving situation.”

Caregiver burnout may cause caregivers to feel resentful towards the family member who needs care. Caregivers may demonstrate increased anxiety, depression, or irritability. They may withdraw from social activities or family events. They may face new illness or sickness caused by disruption of sleep or eating patterns. In some extreme cases, they may want to cause harm to themselves of the person for whom they are caring.

How do we avoid caregiver burnout? Listening to workshops this month and reading some online lists, I think the key to avoiding caregiver burnout is practicing self-compassion.

Self-compassion is not selfishness. It is not self-pity. It is not self-indulgence.

Self-compassion is treating ourselves with the same understanding and care we display to others who are suffering. It is offering kindness to ourselves rather than judgement or criticism. Self-compassion is looking at a difficult situation around us and saying, “this is tough – how can I care for myself now?”

Self-compassion is one form of nurturing ourselves. When we show ourselves compassion, we recognize our humanness and frailty. We understand we are only one person, and allow ourselves to be imperfect. We are patient with ourselves, and acknowledge we may forget or make mistakes from time to time.

I am not good at self-compassion. I am not so understanding and forgiving of myself. I am judgmental and critical. I expect more from myself and I am disappointed when I don’t live up to the expectations I have set for myself – even if those expectations are not what some would call realistic.

Yet, if a friend makes a mistake and doesn’t show up for dinner on Thursday because she thinks we were meant to get together on Friday, I forgive her. When one of my Personal Assistants accidentally scratches me while she is taking off my socks, I don’t hold it against her. When a colleague brings me the wrong item from the storage closet, I don’t get upset.

Of course, I am not perfect. I make mistakes and disappoint those who may rely on me. I know I am only human, but rarely do I accept my humanity and practice self-compassion or self-kindness.

My head is full of what I call the “ought to” and “should do” voices. These are the thoughts like the one which tells me I should go to calling hours for a friend’s son even though I have worked a 53 hour work week and my body is too weak to transfer in and out of my van one more time. Or the one which suggests I push off my monthly therapeutic massage for another week to attend a baby shower for a distant friend who hasn’t spoken to me in four months.

I don’t always listen to those voices. I skipped the baby shower and kept the massage appointment. But acting in a manner of self-compassion took effort. For me, if often does.

In her book Uncovering Happiness: Overcoming Depression with Mindfullness and Self-Compassion, Dr. Elisha Goldstein states, “Self-compassion doesn’t come naturally to us, and there’s an evolutionary reason for this: the brain is hard-wired to cling like Velcro to our negative voices and to act like Teflon when it comes to the positive ones.”

It’s helpful to know I am not alone in my efforts to be more self-compassionate, and there may be a reason. The caregivers I met at Saturday’s conference had similar stories. They shared feelings of guilt at taking time away from loved ones to engage in activities which nurtured their own soul. Many described times where they felt they had to be perfect in their attempts at care.

If our brains are indeed wired to cling to negative voices, maybe self-compassion starts with changing our self-talk or those voices we hear in our head. Instead of saying “ought to,” “should do” or “why didn’t you” we could try “if there is time,” “maybe” or “I really did my best.” We can begin to stop saying “yes” when we really mean “no.” That last one is a personal struggle.

I suspect we all want to offer our best selves to others, particularly those who depend on us. One way to do that is to recognize we are worthy of the same nurturing and compassion we give to those around us, and then to act in a manner of kindness towards ourselves as well as those we care for.