Day to day to day

Anton Chekhov said, "Any idiot can face a crisis; it is this day-to-day living that wears you out." This says a lot about caregiving. Personally, I have loved those that I cared for so much, the wear comes more in the form of weariness from feeling helpless, and the devastation of witnessing the transformation of a vibrant loved one to a vulnerable loved one. When I am unable to relieve someone's pain or help their life circumstance, it leaves a scar on my own heart, an ache in the background. In my own experience, the three people I cared for were each so heroic in their own circumstances, that it made (makes) my day to day a series of lessons. The gratitude I receive in return is more than compensation and soothes that scar. Time spent together is precious. I have experienced the circular nature of life and relationships, the give and take, stretch and ease. Caregiving is a gift to us. It may wear us out but it won't wear us down, it will make our hearts larger in the end.

Family

"If everyone would just take care of their own family the world would be a better place." I've heard my mother say this many times. It sounds so simple yet it's so profound. Many people spend their wall to wall scheduled days working, volunteering, trying to give back to their community, stressed out and exhausted from all the stuff they have to do. There is little time and energy left over for family-the people we love that need us most. In fact, our families often get the leftovers...the tired, grumpy bits of us that collapse on the couch at the end of the day. Just when you've given all you have to give, your family stands there wanting more.
Here's an experiment. Decide for one week that the members of your family are honored guests at your house. Don't tell them you have decided this, just act this way and see what happens. Dole out kisses hello and good-bye. Greet members of your family like the family dog greets you, with unconditional excitement at their presence. Say the words, "I understand" when they have a hard day. Listen. Give a heartfelt compliment instead of just thinking it. If mom's theory proves true, the world will be a better place. (And you might discover a few surprises yourself).

I wish I may, I wish I might

Woke up wide awake at 2:30 a.m. again with thoughts running wildly through my head. I did what I always do when I lie awake in bed at night. I prayed. Whatever you call it: wishing, meditating, praying- it's where we go internally to give thanks, face our fears, ask for courage and strength, or send our questions up to the universe-especially those questions we don't know the answers to. Why do good people suffer? What is the meaning of our life? My mother's room is her nest, padded with mass cards and small prayer booklets. She is a devout Catholic and it has served her well. Her faith shines through her daily actions and guides her life. She says she's not afraid to die, so why am I afraid to watch her die? "Say a Novena for me, Mom." I've heard my siblings say this sentence many times over the years. Ever since we were little kids we knew the Novena was the 'big' prayer, the one that meant business and got results. Mom's Novenas were our emotional booster shots. There's comfort in prayer, the kind of comfort that reaches through the blackness and takes you by the shoulders, reminds you that your words drift upward and twine together with all the other prayers in the universe to form a sort of net that catches us. So here I am once more and here's to all of you out there wishing and praying for peace.

Outer Banks

I'm in the OBX right now for a weekend getaway with my husband. I've been advised to 'take a break-relax a little.' I visited with a dear friend, Nancy, yesterday. It was her birthday and we took a walk in the winter sunshine, then had lunch out at a landmark diner on the beach road. She's someone I can pour my heart out to and she never hesitates to give me the same treatment. Honesty with compassion, so refreshing. Last night was dinner out with my husband and another couple, followed by a fire in the condo and a cuddle on the couch. Yet even with all this, there's the invisible umbilical cord connecting me to that bedroom upstairs in my house in Richmond where my mother spends her days and nights. A nurse is looking in on her this weekend for the first time. It's all new to us-- the need for her to require help--and so shocking to me, since she was always the first one to help someone else. That's why, when she called to tell me the nurse has had a somewhat difficult life, and that she kissed my mother on the cheek when she left, I wasn't surprised. She has already bonded with this stranger and become her friend and mentor. In fact, I smiled to myself knowing full well that we are paying this nurse and she's receiving the gift of time spent with Jule, and will come away a better person for it. Truth is, it's great to get away, but I can't wait to get back home.

Insomniac

It's 12:41 a.m. and I've been tossing and turning...not sleeping is the hallmark of a caregiver. I know many non-sleepers who share this trait:all day they function quite well (With the exception of those very first "gotta get up NOW?" moments) but at night, when it's dark and quiet, troubling thoughts come marching through like a parade complete with trombones and trumpets. I've tried just about every remedy including ear plugs in a quiet house, and sitting right in front of me on my desk is my empty cereal bowl (maybe the milk will help). I have relaxation tapes, I read in bed, and make my husband rub my back (Sound familiar sibs?). It's all to no avail. The upside of this is that I have a deep appreciation for a good night's sleep. I treasure it like an unexpected gift and even now, I'm thinking, maybe tomorrow I'll get one :)
When my children were babies, I sang to them...the song from Mary Poppins: "Stay awake, don't rest your head. Don't lie down upon your bed. As the moon drifts in the sky. Stay awake, don't close your eyes. Though the world is fast asleep. Though your pillow's soft and deep. Your're not sleepy as you seem. Stay awake, don't nod and dream..." They loved that song. I never knew I'd be living the lyrics. Good night all. Sleep tight.

My Funny Caregiving Story

My dad had dementia and lived in an assisted living facility. One night, the phone rang. Dad was being taken to the hospital. I rushed to Morningside to be there when the ambulance arrived so he wouldn't be afraid. He lit up, as he always did, when he saw me. Everyone loved my dad. He was gregarious and sentimental, always friendly. As the crew carried him out on a stretcher, the nurses and aides crowded around him wishing him well. "I love you Mr. Healey," one nurse called to him, as they carried him down the hall. "I love you too!" yelled dad in his musical voice, then he lowered his head, looked at me and asked, "Who was that?"

A Little Humor Never Hurt Anyone...

Okay, several friends have written me on email commenting on my blog but no one writes on the blog site under comments, and what I've heard from people is....whew, this is depressing...you could use a little humor...so here is the challenge...

For those of you who know how to post a comment I'd like to hear your best funny caregiving story EVER...I will sleep on it and post mine soon...ah, the suspense! Please, someone WRITE:)
(and, on a personal note, to my friend, "Retoite" you better write soon).

How Long Do I Have?

From the moment we are born, we begin to die. It's odd how our culture waits for a labeled disease and a deadline to say we are dying. "He's dying of cancer, or she's dying of heart disease." Mom's hospice nurse reminded me that we will all die and it could be sooner or later so let's all get on with living. That's the message of hospice. Live well, live comfortably, and live with dignity. This is advice I could use right now in my own life. Why wait until "I'm dying."

Walking Through the Wilderness

Caregiving often takes us where we don’t want to go. In a paper entitled “The Wrath of God” written by my sister, Mary O’Brien, for her Masters degree in Pastoral Care, she refers to a poignant quote by John Sanford from The Man Who Wrestled With God. His words hit home with me.

“To be forced to undergo a journey through the wilderness is an archetypal experience. Perhaps everyone who is called upon to a higher psychological development must undergo such a wilderness experience. There are many ways we are forced to undertake such a journey. People can be plunged in to a psychological wilderness, a dreadful time of doubt, anxiety, or depression and never leave their doorstep. Looked at purely clinically, the journey through the wilderness appears to be a sickness or breakdown; looked at spiritually, it may be an initiation or rite of passage we must undergo in order that a change in consciousness may be brought about. Egocentricity dies hard in most of us. Often only the pain of a wilderness journey can bring about the desired new attitude.”

These words jumped out at me as I thought about all three of my caregiving experiences. In each case, the person that was sick underwent a transformational change. As a witness to their journey, I too was transformed and taken through a rite of passage that produced a potent blend of fear, denial, anger, sorrow, joy, gratitude, and eventual peace. Sometimes the lessons learned through hardship are better learned earlier in life than later, as was the case with my husband’s sudden injury. Live for the day. Enjoy the moment. Don’t sweat the small stuff…clichés—that is, until you truly understand and live what these simple sentences mean. All these lessons have stuck with me and have greatly enriched my daily life. I’m grateful for having walked through the wilderness with such mentors as my husband, father and now my mother.

Take Care

I often leave people with a cheerful "take care!" Only today did I look at the words literally.
To one who gives care most of the time, taking care can be difficult. I went for physical therapy this morning for pain in my neck and the therapist gave me print outs of exercises to do along with a healthy dose of advice: stop reading in bed, raise the computer monitor, get up and do ten sets of these stretches for every hour at the computer--sounded like an awful lot of rules to follow just to limber up my neck, but the therapist said if I didn't do it, I would have a bulging disk, and that sounds like something I don't want.

Three generations of women are living in my house this week. One of my daughters is home on break from college. She offered to cook me a vegan lunch. She heaped my plate with roasted vegetables and a slice of toasted whole grain bread, sat down with me and ate. Then she cleaned up the mess. Eating such wholesome food made me feel a bit healthier. I actually "took care" today, and it was a welcome change of pace.

We learn what we let in

I've taken care of three loved ones. First was my husband, who suffered a severe traumatic injury in a bicycle accident in 2002. He taught me endurance and patience. For nearly two years, he struggled to regain the use of his left side, to rekindle his memory and to restart his life. His recovery was a near miracle and was so grueling, it left me with post traumatic stress, a stiff neck, and some emotional baggage. Thankfully, my happy gene and lots of support from family and friends helped me remain sane. Once he was back to work, my dad's health deterioriated. His problems were many: heart disease, diabetes, weak lungs, and vascular dementia kept me busy with many doctor visits, falling injuries, emergency room visits, and his ultimate death. He taught me to see the lighter side of everything, including sickness. "Death is a part of life," he'd say, "It's all just a cycle." No matter how horrible he felt, he always lit up when he saw me. He was my "strong dad" to the end, if not in body, in spirit. And now I care for my mother, the woman who has been my rock through all these other times. She has encouraged me, advised me and let me cry on her shoulder. She lives upstairs in my house and is in hospice care with COPD, a prisoner of her own immobility. Moving takes her breath away, so she mostly sits and reads in her cardigan and pearls, sitting straight as a lady at tea, blue eyes shining. She's taught me too many lessons to write here. She's modeling how I should gracefully accept my own final days on earth with dignity and gratitude. So caregiving is also care-receiving. We learn from those we care for. Their job is harder, because they are trapped in bodies that won't cooperate anymore. I, at least, can go for a stroll in the sunshine, get away, run if I want. It's harder to receive than to give at the end of life, especially if you spent your life giving.

Therapy

Mom and I have been watching "In Treatment" on HBO. Somehow, watching various people in crisis, cry, deny, hide, and vent entertains us. We especially like the episodes where the therapist visits his therapist and behaves in ways that resemble his own patients. The show shines a light on how easily we detect denial, fear, and insecurity in others but fail to recognize them in ourselves.

That which I most detest, I am.

It's so much fun to watch other people be crazy. It makes us feel so sane.