Breathless

The little girl squatted near to the ground with her head bent over as she stared at the earth directly under her nose. She held her breath. She waited for one grain of sand to move near the entrance of a tiny hole in the sand.  Earlier she had stuck her small wood stick into the hole while singing the doodlebug song. Now she waited. It was the doodlebug's time to play the game and come up through the hole in the ground pushing a grain of sand to the side as it emerged. The emergence was the sole reason for the stick and the song. 
The little girl rocked back on her knees feeling a tingling and the beginning of discomfort from squatting. Her hope of seeing a doodlebug was fading when she noticed, a little to the side of the hole, a small ant carrying a tiny twig while moving at a fast clip up and over miniscule obstacles in the sand. At his size and with the weight of his cargo there were a great many obstacles. He zigged and zagged around first one and then the other piece of leaf, pebble and tiny trenches crossing his path. 
The journey of the ant fascinated the little girl. She forgot about the doodlebug. The tiny ant claimed all of her attention. 
As the little girl watched the ant she struggled with the temptation to interfere with his journey. She fought the urge to confuse him with larger objects or to move him off his path with a small twig. The ant, unaware that his plans were at the whimsy of a huge being squatted near his path, continued on with his cargo of a tiny twig firmly in his grasp. 
The child moved her body around relieving pressure from her legs without losing sight of the lone ant. 
She became fascinated at the determination and tenacity of the little soldier ant. He seemed to be on a solitary mission. Moments passed as he toiled away and she cheered him on finding delight in his conquests and anxiety as he worked through yet another barrier. Many moments passed this way until the little girl heard her mother calling for her. 
Mouthing silent encouragements to the ant she stood and turned to leave.
Seconds later the doodlebug pushed a grain of sand out of the small hole in the ground. He pulled himself up onto the flat ground. Strange, he thought to himself, he could have sworn he heard someone singing the doodlebug song accompanied by the swishing of a small stick in the entrance of his home. He sighed a little in frustration at the effort it took for him to answer the doodlebug call. Turning, he began the journey into the safety of the sand pulling a small grain of sand in behind him.
Meanwhile, the ant continued negotiating his way over and through a tangled mass of detritus. He did not think of the struggle. He thought no further than the challenge in front of him. Oblivious to anything outside of his mission he soldiered on with his tiny twig grasped tightly to himself. 

Quite A Dry Spell

My creativity dried up for quite awhile this time. All attempts, on my part, to kick-start my brain have failed. Happy Harry the Hippie Man has paid me several visits in the past month. He walks into my brain trailing a dramatic and colorful portfolio of ideas for me to consider. I have paid little attention to him, which is not the recommended way of responding to Happy Harry. He struts back and forth in my head, sits for a few moments, jumps up looking around as if someone may be coming and resumes strutting though less enthusiastically. At this juncture, Happy Harry suspects he may have seen the last of me. It is not true but Happy Harry has a fragile ego and a need for attention. 

Meanwhile, back at the ranch, our days are much the same, day after day. There are medical issues, daily life challenges and not much else. Caregiving is a crazy maker. Every day could be the day the other shoe drops or not. Interpreting symptoms and making decisions about medical care; go or no go feels like a responsibility better suited for someone, the mythical someone, who will just "know" what to do and when to do it. 

Our washing machine and the dryer are broken. The dryer is optional. The washing machine is a necessity. A friend of my mother is an appliance repairman. He told me one thing to check and how to fix it if it was broken. I followed his instructions and discovered the part is broken beyond repair. I went on youtube and searched for videos of people demonstrating how to make the repair and I think I can do it myself. I am going to do the repair. I have had a craving for a long,  time to be able to repair something in this house. It is not my strength and I have been timid about trying. After following the steps given by the repairman and watching the videos for the full repair, I feel confident that I can make this repair and that is so freaking cool to me. Yeah, baby!

Do you, my faithful reader, ever think about how you got to where you are today? When you were a teenager did you see yourself where you are today and doing what you are doing today? I did not have a clue.Years ago I partied at the beach I live eight miles from today. I never thought that I would be living here, a full-time caregiver and soon to be 66 years old. I had no plan for living this long which is probably how I, in a willy-nilly fashion, ended up here. At one time I believed I was missing out on something that "could have been". Believing that concept made me emotionally sick. Today I believe that I am in the right place. I believe I am doing the most important thing I could be doing with my life and 66 years of age is o.k. with me. 

Tonight I am at peace with who I am and with my daily life. I do have fear and concerns about my husband's illness and the daily grind of caregiving wears on me. That is why a character like Happy Harry the Hippie Man brings joy and diversity into my life. I don't think he knows how much I like him and his visits. He may believe he is far too complex to be a comfort to an older woman with an utterly boring life compared to his own life. 

I suppose we shall soon experience him again. I will give him his voice and he will give me himself. As a writer, I run the risk of manipulating a character such as Happy Harry by the use of my own words. So, I give him his voice and I get himself, in return. The reader experiences the character's essence and I dress him up. It is a dangerous alliance. If I did not respect Happy Harry I could dress him as a "dandy" and make him bald. Did you hear him scream just now? Just kidding, mate! Just kidding! 





















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On Being Used Up

On one or more of my most arrogant days I have been so bold as to say to someone or other, as the arrogance would be less important were I to keep it to myself, that I have asked God to use me up. I have asked to be burnt down to the nub in my service to Him. Writing this in the early a.m. I am appalled at the arrogance of my belief in my own depth of ability to hold out long enough to be used up on an eight hour a day job, much less used up in the service to the Almighty. Nonetheless, I will say that today, in so much as I am able to be used up, I have been used up.
There is no need for me to go into great detail or to prove my case. I feel it in every fiber of my body and mind. As a full-time caregiver there are days that pass without much effort. There are days that pass with one thing after the other and there are days that are packed from morning to morning with one task after the other springing up as if in a race to the finish. Today or whatever I am calling these endless days with little sleep, was a springing up day. From start to finish, stem to stern, stick a fork in me I'm done kind of day.
Mind you, I am capable of leaving an alarming number of tasks undone. If there were such a thing I could be said to be a multi-untasker. I move from task to task moving first one thing and then the other and back again. It is precisely that trait that allows me to say with all sincerity that I have been used up this day. All the undone tasks remain undone. Today I, in the role of caregiver, have been used up. Hour by hour, need by need no hour was left with a minute in it.  At 2:30 a.m. I sit here at my laptop, before I prepare to go to bed, and I can state with all honesty, that I have done a good day's work. I have done it well and I have done it willingly. I have learned that, for most of the caregivers I know, a day like today means a great deal to them. It means a great deal to me. It humbles me. What is far more amazing is that my husband and I have done it together. Not professionally or skilled but, in our own way, we muddled through this day. Two of the most stubborn, self-willed adults you could hope to meet on the street worked together today. Not planned. Not rehearsed. Winging it all the way, following each other's cues and letting the less successful moments go without marring the next task. we, without discussing it, made it. Yes, he still has FTD and I am still not the poster child for patience. I am learning that less than perfect but done is just fine with me, just fine with my husband and I'm thinking much more to God's glory, than anything else, we could have done today.

Missing, Missed, Found

Friends seem surprised when I say I do not see myself as family oriented. I am 65 years old and 33 years sober and clean. This puts my mommy years smack in the middle of all the chaos of my drinking, drugging, awful lifestyle choices and all the associated trauma. I have judged myself, for years, based on those years The years when I loved my children more than I loved my own breath yet abandoned them, if not in body, from having a healthy, functioning mother. I have spent many years beating myself up and making the assumption that everything that could be said about my 65 years was said and done during "those" years. I could relate funny stories of how I believed I was not providing one thing or the other only to find out that I was providing that thing but was completely blind to what I needed to be providing. At best the love I had for my children confused me and them. I loved with all my heart and I protected with my broken part. What does this have to do with the topic of this writing?

For whatever reasons my life circumstances and those of my husband's have brought people into our lives on a more intimate level than I allowed in my "other" world. Though outgoing with a flair for the dramatic I am also an introvert who has kept most of my cards close to my chest and have made our home a veritable fortress. This means we do not invite people into our home. My husband does not go out. I go out to see friends and family and I love them all. I have many friends who love me and I love them. Until my husband began showing symptoms that were impossible to ignore of something we did not know we spent little time together. He fished constantly and after work, I spent time with friends, my folks, church family and family. There had been many, many indications that something was wrong on a number of levels. I kept these times to myself. They involved psych ward visits, multiple medications, disappearances from home for up to a week at a time, a period of respite and then another cycle. I cannot say that all of this related to the formal diagnosis of Frontal Temporal Degeneration. I have done in-depth reading of FTD and I believe part of the long slide to the loss of the use of his legs began at least several years before that loss. It is this turn of events that brought me out into the open along with my husband. Suddenly we were visible at the doctor's, at the emergency rooms, at the nursing homes with the rehabilitation teams and in our home as home health care and social services began to involve themselves in our lives.

In retrospect, the process of becoming visible happened in the shock and after-shock of the changes that were coming at us one after the other. My husband learned to hear himself discussed and poked and prodded by complete strangers. I learned to speak up and advocate for him, inform medical personnel, hear the tough news, sign papers one after the other and listen. In different ways we have come to trust and depend on people in our lives. People aware of us. People who care and want to be involved. People we will never meet who help me through chat rooms and organizations on the internet. Both of us, intensely private in our own ways, have become visible and in need of being visible. It is in this new part of our lives that I began having people identify me as an intensely family oriented woman. The first time I heard those words I looked around outside and inside myself and made no reply. This person clearly did not know me. I was a failure at being family oriented. Look at my history, I wanted to say, but I remained quiet. At first these were professionals who expressed admiration and encouragement to me as an intensely family oriented person. I heard the words and I wanted them to be true. I so wanted that to be about me but I knew I had failed and I knew they did not know I had failed. I allowed the words to be said without my input. The story was too long to tell and no one seemed to want to hear anything about me that had to do with how I had failed at anything, let alone being family oriented. And so, I lived in this world of caregiving my husband, interacting with strangers, asking God for strength and once in awhile I took a peek at the idea that there were people who saw me as an intensely family oriented person.
But, that is not the end of my story. Friends began to identify that trait in me. They were surprised that I did not know that about myself. With friends I could argue, point to the obvious shortcomings of my past and still they persisted. They would not allow me to change their perceptions of me and they would point out where I was wrong and how I needed to wake up and accept reality.

So what does this have to do with my topic?

We have four indoor cats. They are all adopted and we have had them for several years now. Each one has a distinct personality and there are times when I would love to drop kick each one of them out the door and into the street. In addition I feed and water two outside cats who found out there is free food on this corner and now they are family by proxy. My husband loves to grouse about all these cats and how did he let this happen and I stumble over them uttering words not meant for paper and I clean the litter and buy treats and one by one they each spend time with me for snuggles, peeling off with their claws (because I do not believe in declawing), leaving scratch marks that led one doctor to ask if I had started cutting myself. "Oh yes, doctor, I am 65 years old and have seen heaven and have seen hell, and now, now of all times, I have decided to start cutting myself!" I answered sarcastically. I explained the cats, got a roll of the eyes for my trouble and left carrying my battle scars with me.

My black and scrawny cat goes outside and comes home or I go and chase him down and bring him in when it is time to come back to the house. All of us know this game and all of us (my husband, myself and the cats) know the ending. But, about four days ago, the golden orange cat with the golden yellow eyes shot out the door, rounded the corner and ran off the deck. He has done this before and he has always come home in a day or so. I started to chase after him but threw a choice word at him as his fat, house-fed buttocks rounded the corner of the trailer and disappeared. He will come home soon is what I told my husband on the first day. On the second day my husband told me that he will find his way home when he is ready. By the third day I am wondering if he is lost or off in the field with the feral cats playing and forgetting his home. The two outside cats are not giving up any clues. My heart is sinking. I love that orange cat. The big, white and so un-siamese Siamese cat is walking around the house quietly, going into rooms he never visits, creeping along quietly and I realize he misses the orange cat. I miss the orange cat. My heart is starting to fill with sadness as I pick up the siamese and hold him tightly. He is not interested in me. He wants down. He misses our friend. He likes to wrestle with him and bite him and make him scream that awful cat howl. So, I say a prayer and I let it go and I check outside once in awhile and no orange cat. I want him home. I worry about him. He is a part of us.

Last night, just as it got dark outside, I stepped outside to see if that orange head would pop out from the trailer underpinning. Nope. An opossum ran out and the two outside cats ran towards me as I took the garbage out. I was pondering the oppossum trying to remember if I should be alarmed or not when up jumped the orange cat onto the opposite side of the deck. He gave me a look. He gave the two cats a look and turned as if to leave. He is easily frightened. I called his name. "Tigger! Tigger Come here, Tigger! He paused and I swooped down and grabbed him and hugged him and whispered happy stuff into his ears and opened the front door for him to jump inside.

He was disoriented. He clearly had not meant to be gone so long. The other cats began sniffing him to discern where he had been and catch the scent of adventure. The siamese cat approached him, backed off and later made overtures at him to engage him in a small battle. But the orange cat followed me around. He came into my room and mewed until I picked him up. I put him down. He mewed again. O.K., I thought, you want me to go into the living room and stay where you like to stay. You want to feel safe and you want me. I got up, stretched out on the sofa with my husband stretched out on the other sofa and four cats finding their individual spots. The orange cat stopped mewing. I slept.

In the morning my husband told me I was surrounded by three cats as I slept. The black cat is too cool to find himself in that number. I looked over later and I saw the orange cat gently reach out one paw and put it on the white cat. I watched him snuggle down a bit with that outstretched paw and I felt so happy, so happy deep inside. This afternoon I understood. This afternoon I believed. I am an intensely family-oriented woman. I love my family, I love my animals, I love my friends and I love loving them. I get it. I understand now. A deep sense of peace entered me as I saw it for myself and I claimed it. I am an intensely, family oriented woman.

The Truth

I am not so keen on the truth at the moment. I chafe at the bit in my mouth. The reins are held tightly, pulling at me, holding me back from my daydreams of running, feeling healthy and free of distress in my body. As the years pass I experience a deep disappointment in my body and all I have missed.

No one sees the cruel restraints. No one knows my deepest cravings. No one knows the relentless straining at the bit and surrendering to the tension over and over again. I have let go and let go and let go of so much of what I wanted for myself. Tonight I am frustrated and hating this enemy, this nemesis who holds the reins and controls the tension and has no compassion or mercy for the dreams I watch slipping by one after the other. 

Dreams of long walks, camping, breathing long, deep breaths of air every day, a release in my chest, no sore throat, no exhaustion, free of the impatience illness breeds,the anger that grows so quickly into a wild rage and, most of all, the ugliness and infectious growth of self-pity. Oh yes, self-pity fueled by my dwelling on the dreams I have watched passing by. Self-pity conjured up as I sit, even now, feeling the illness in my body. It has been with me so long, with brief respites teasing me into a false sense of hope, and a delicious rush of excitement at the idea of being free.

Tonight I am experiencing the fight against the system that has besieged my body for a very long time. The fight is not for the release of the bit in my mouth or for the return of good health.
The fight is for a victory nothing can defeat. The cost of this battle is the surrender of my hopes, dreams, and desires associated with physical health. The victory is surrendering to win. Letting go of all that angers me, frustrates me, creates that wallowing self-pity and relaxing with the bit in my mouth, relaxing with the tight rein and the absence of a plan of my own. The victory bears a high cost. The surrender removes the burden of that cost.  Nothing will change yet everything will change.

I am learning. I want to be content in whatsoever situation I find myself. Paul wrote of that in the Bible. He suffered greatly and he rejoiced with abandonment in the face of suffering. He wrote that he learned patience. This is why I know I can wean myself off of the unhealthy staring at what could have been or could be and living in the truth as it is today. I can learn from all the angst and the loss of freedom and dreams unfulfilled. I can be content in whatsoever situation I find myself. I have a powerful example in Paul and I want what he learned. But, it is not easy and I don't come towards it jumping with joy. The only way I can come to it is through surrender. I am facing a clear choice. Hold on to my disappointments and frustrations about my health or let them go and live free and content just as I am.

A Little Something

Sitting at my laptop and sending out emails and responding to others while listening to the rain fall is about as mellow as it gets for me. My car has not left the driveway for a day and a half. I have been home and resting, doing a bit of cleaning, sorting through a few boxes and eating. Eating is high on my priority list it seems. I am eating healthier a little at a time. Smoothies with berries, tofu, peanut butter and almond milk are yummy. My weight has increased more than I would have believed during these years of caregiving. Honestly, losing weight is a plan I have but it is not a passion I have at this point. I made my peace with that reality by reading and chatting with other caregivers. Gaining weight goes with the territory for many of us. I don’t think I am using that as an excuse. I am using that information to give myself some grace. I need grace more than ever these days. I receive grace in the chat rooms and in the comments on the fb group I joined. Caregivers are, for the most part, supportive in a deep and comforting way that takes some of the negative self-talk away and replaces it with the understanding that I am doing a good job and I am appreciated among my peers.
I had the pleasure of speaking with a long time friend of mine who has been caring for his wife for a number of years now. His wife has ALS and requires someone with her at all times. I don’t see him out and about very often .  Yesterday he came to mind and I called him and mentioned that I had not seen him in quite awhile and I wanted to hear his voice. He has been bitter and unhappy the majority of the times we have been together. His wife cannot scratch her own nose so it does not take a great deal of imagination to know how much she needs done for her. She has been unpleasant in the extreme, ungrateful, demeaning, etc. to him. We discuss how awful it must be for her. He agrees yet with the constancy, confinement, exhaustion and loss of companionship with others he loses empathy for her. But, this conversation he was upbeat. The aide he hired to be with his wife for 20 hours a week so he could get out had been a disappointment. She stopped showing up. This is not a new story in his life. For six weeks he has been at home. I called at a good time. They purchased a new wheelchair for his wife. He said it is the fifth one in the house but this one has lots of bells and whistles and, best of all, there is a gadget that allows his wife to use her head to move it about the house on her own. He said she has been doing circles in the living room and was so happy. I said I had never heard the enthusiasm in his voice or the affection and excitement towards his wife. As I was talking to him I thought of what it would mean to me if I could not move at all to help myself and suddenly I had the ability to move myself from room to room without help. The chair has a number of positions and is a deep blessing in their home. I told my friend that I felt wonderful hearing the change in his voice. He had also hired a new health worker who seems to be responsible and reliable. He can begin to get out and do yard work, see friends, hang with the guys.
We were talking about attitudes and caregiving. We talked about the traps of self-pity and the many mindsets that can take over and ruin our days. He said something that I loved and I wrote it down and may blog on it later. I share it with you now. It isn’t a new thought but the way he worded it gave it power. He said, “We do not have to sabotage ourselves.” Aha! I had one of those moments when the way a sentence is worded shines the light on my choices and I take a mental note and a step back. Inside of his statement is the truth that we choose our behaviors. I know this, of course, but I forget that it is an unhealthy thing when I make decisions and choose thought patterns that sabotage me. The painful and not so pleasant aspect of his observation is that I have nowhere to point my finger and claim this person or this situation did this to me. I  am reminded of the old spiritual with the line in it..”It’s not my brother, not my sister but it’s me oh Lord, standing in the need of prayer.”

A Way Out

There are days when nothing seems
to work out right.
When darkness crowds around me
blocking the sunlight.
There are days when sorrow fills me
up
And I cannot seem to look past the sense
that all is lost.
And there are days when helplessness robs
me of my joy and my strength
BUT
I am an overcomer!
There is a way out!
I do these things to find my way and
I offer them to you.
I tell God I am lost and I need Him.
I call a friend who cares
and loves me.
I know the darkness is a lie that I buy
 into.
I know the helplessness is a trap I fall
into 
I know the sorrow is honest and I feel
it.
I know when I feel that all is lost I 
can choose 
To find ways to lift my spirits even
if nothing changes
Because I am an overcomer and I
may get down and out
BUT
There is a way out and
I choose it!

The song I posted below is one of the songs I listen to when I cannot find my way. I have been so lost in the past couple of months and I lost my way. I could not find it on my own but I found this song and this song woke me up and reminded me that I have a choice. We have a choice. I hope you will choose to listen to this song. I pray it will bless you as it blesses me.  There is a way out.