Freedom

I'm thinking of what fear feels like and reaching back to find times in my life where fear grabbed me around the throat and choked off my joy or my chance to do something thrilling or fulfilling or anything that was on the other side of fear. I am thinking of this because I just had a discussion with someone very close to me about fear and I felt that fear slide up into my throat like a cunning viper snake and I remembered that I am not accepting fear at the moment. The door is shut and locked and I am not peeking out to look at the fear. One look can last for days and days and paralyze me with overwhelming imaginings of "what if" and I know that "what if" never happens. I am not talking about healthy fears here, just to stop that train of thought, cause I am not crazy or dumb. Healthy fear is good and I welcome it and there are times when I wish it would kick in for me.
I am talking about the fear of the other variety and I am going to try a few "remember when's" to express that fear of the other variety and what happened when I stepped through it. So here goes and welcome to the jungle.
I remember standing on the edge of a floating pier that was out in a lake and the water was over my head. I wanted to jump into that water and swim around and feel the coolness but the six inches from the platform into that water looked so far from the water to me and the darkness of the water seemed to swallow up any bravery I could summons. No one knew. I agonized many times from many edges over water that I wanted to jump into and enjoy. I did this for many years. No one knew. I pretended I did not know how to swim so I could be in the beginner class of swimming in my senior year of high school. The idea of jumping from a diving board petrified me. No one knew. I could not voice a fear that I knew was unfounded. I watched people dive into the water, fling themselves into the water, cannonball themselves into the water and they did not disappear into a netherworld or dissolve or die on impact. But I was frozen in that fear. I was in my forties when I met a swimming instructor with the gift of teaching people with a fear of the water. First I jumped from the six inches into the water. Oh, what joy! Then I did simple dives from six inches over the water. I saw myself going to the Olympics and being the oldest champion in swimming. But it did not stop there, friends, my most amazing story is that I became a certified lifeguard through the Red Cross. In my forties, I became a certified lifeguard. I passed the tests. I rescued the fake baby in the deep end of the pool. All of those years of fear that paralyzed me melted away. I looked back and I could see myself full of that fear and feel sad for that child, the teenager, the woman who simply could not make the next move. But then I did and fear showed itself to be a liar. Fear is a liar. The moment I made that first, short jump I knew the fear was a liar. As I type I can feel the freedom from the lie engulfing me again.
Fear of the unknown was huge for me. What was in the dark? Who was upstairs when I knew I was alone in a two-story house?  What lurked in the quiet woods near me when I was alone? Hours and hours of listening and waiting for that "something" to show up and...and what? I had no idea what would happen when and if "they" got me or the woods came alive and took me into their world. Lord only knows, my imagination was as big as this world and I used it to scare myself out of my mind when I could have been sleeping. Again, fear robbed me of the fun other people were having and the freedom they experienced coming and going in that "place" where I just knew something horrible held court. Lack of sleep watching shadows and listening to sounds and waiting for the shadows to move towards me and for the sound to show itself as an indescribable...indescribable what? I had no idea. Again, I became an adult with this fear as strong in me as it was when I was a child. But one day I found myself needing to confront that fear and move through it. The fear was in my way and what I needed was on the other side. I stepped through it. Joy! Nothing hurt me. No one did whatever it was that someone was going to do. Freedom. Precious freedom. Did I have moments later on when I had to walk through this fear again? Yes. Did I walk through it? Yes. Fear is a liar. Fear tells me in an anxious whisper that I better turn around and run. Fear lied to me. I did not run. I walk through it and today I can go where I want to go and stay where I want to stay and I do not have that liar named Fear calling the shots and the "what if's" evaporate and are replaced by the "Yes, I can!"Freedom!
Now I am in a new phase of my life and my husband is very sick. I have sprung a few leaks myself and we don't have a financially bright future and things are getting ready to change and the changes are going to hurt. They are going to hurt to the core. They are already hurting to the core. And the answers are elusive and the journey is fraught with the unknown and yet the known. Fear begins to creep in with the awful and ugly stench I know so well. But this time I have closed the door on fear. This time I have all the experiences of stepping through fear and I have a God who goes before me and, for today, I just slammed the door in fear's face. After all, fear is a liar and fear brings confusion and fear tells me I can't and I won't and things will never be o.k. and what if! Oh my goodness, what if? What if I keep that door closed and throw away the key? What if I dare to be fear-free? What if I choose to believe that I can, and I will, walk free and what if, when I remember the fearful times from my past, I just smile and keep on walking? 

Romans 8:31King James Version (KJV)

31 What shall we then say to these things? If God be for us, who can be against us?

Swimming in Unknown Waters

I pull into the parking lot of the nursing home and rehab facility. I feel tired and numb. A nagging cough has worn down my system allowing a fog to cover my thoughts and muffle my hearing. Robert is in room 105 of this facility. I push myself to open the door to the building, sign myself in and go to his room. He is not in his bed. A few doors down I find him in the physical therapy room. He is in no mood for a bright hello. I don't think there is any activity he despises more than physical therapy. Someone is telling him what to do and for how long and for how many times. It goes against his grain. He looks at me as if I have brought him into the castle of Atilla the Hun and I say something cheerful to the room including him. Robert struggles to conceal a snarl. He is out of his element in another and more powerful way. All of the therapists in the room are women. For Robert, feeling as vulnerable as he feels now, a group of women having a voice in his routine makes him want to bite nails!  
A week later: I thought Robert had given up on himself. He did not want to do the physical therapy or watch t.v. or open the door to the hallway. He wanted to sleep and be left to his own thoughts.
The medical staff discovered that Robert had a UTI and after a couple of days of antibiotics Robert was back, kinda sorta, agreeing to do p.t. and watching a little t.v. and strutting a bit of will to improve. 
Christmas is almost here and I have not done one Christmas thing. Whatever a Christmas thing looks like these days. No tree because the cats would find a tree particularly enticing. No gifts because of no money. No people over or to visit in their homes because Robert is in the nursing home and no one has put forth an invitation to their home. No sorrow about any of this because Christmas is more than just one day of the year. Putting it in perspective, which I can do at the age of 66, creates a peaceful place in me. I get melancholy when I imagine life as it was or how I have crafted it to have been long ago. Life always looks better in the rearview mirror. Oh dear, that sounds pessimistic and I don't feel pessimistic at all. I feel real and I feel free of the burdens of recreating something that was meant for a time in my life but not for all of my life. I could demonstrate a different approach to Christmas. I could decorate the deck and bake cookies and any number of other things to celebrate the season. I just don't want to do those things this year and have not wanted to for a number of years. I love the decorations of other people and how they have hung lights from every available space in their yards. I love the coordination of song and decor so popular these days. I love all of it. I don't want to do it here. I have learned that I end up with piles of lights and screws, nails, a hammer, some tape and a partially wrapped deck when the mood goes away and the decorating grinds to a halt. 
If children lived here with us I would take another approach. If donkeys could fly...you get my point. 
Meanwhile, back at the home place, I settle down for a long nap and a few motivational thoughts drift through my mind. I shoot them down with my imaginary motivational thoughts gun and settle myself in freedom from unrealistic expectations.                                                                                                                                                                                                                           

Two Sides of One Coin

When you wear the weed of impatience in your heart instead of the flower Acceptance-with-Joy, you will always find your enemies get an advantage over you.” 

― Hannah Hurnard, Hinds' Feet on High Places


"Outwardly, I was a person of service, sacrifice, self-discipline, and apparent loyalty. But inwardly, I was filled with spiritual ambition
-- the earnest desire for some achievement and distinction and the willingness to strive to achieve it. I had an insatiable desire to be seen and counted among the mature and successful. This resulted in a deep inner struggle with competition, rivalry, and jealousy, and left me with an ever-pervading sense of restlessness--the feeling that there is something more that I have to do or put in order to feel valued, affirmed, accepted, or like I belong.

Jack Frost, Spiritual Slavery to Spiritual Sonship

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.

Looking For A VPN

Every time I encounter a glitch, curiosity or system problem in any of my electronics I identify with Alice In Wonderland as she fell down, down into the rabbit hole finding herself in a world that made no sense and for which she was ill equipped to negotiate.

If you do not have the pleasure of knowing me you will not know that I am famous for buying a pig in a poke or, if you are not rural enough to understand that phrase, I am impulsive. Impulsive in spite of the many scenes of carnage scattered behind me from previous impulsiveness. Impulsiveness disguises itself as the brilliant deductions of a quick minded intelligent person. Or so it seems to those of us who possess this trait, in the face of all evidence to the contrary.
 
This is precisely the position I find myself in at the moment. I lost a phone. My phone to be specific and, though I complained about it, the phone worked and I could use it. I could use it because I had used that same type of system for years. The operating system operated as I anticipated because I did not know what operating system operated the phone. It was a given. It was one of those functions I expected to perform without a thought on my part. To be fair to myself I could have found the name of the operating system if I needed to know it. I did not, however, understand that one operating system can be quite different from the other nor did I pay attention to what I did know. I did know that operating systems are not always compatible. But the ones I used always seemed to like each other well enough so, like the renowned fictional character Scarlett O'Hara, I would think about that tomorrow. This is where I will admit that impulsive behavior operates out of a fictional assumption that things will always work out right in the end. At the time of making a decision based on that assumption I am blind to the assumption. At times I will sense a gut instinct that I am in dangerous territory but I scoff at that instinct. Remember, impulsive behavior operates on the belief that it is birthed from a quick-minded intelligent person. Which is exactly why I have spent an inordinate amount of time looking for a VPN for my new Windows based  phone with the latest update.

There I said it and I cannot take it back. I bought a Windows based phone. For people who understand operating systems and acronyms of the electronic world and navigate from one system to the other this is not an alarming confession. I am not of that ilk. Every setting that needs adjusting is a lesson in extensive research for me. And so it is with my search for a VPN number.

I am going on the assumption that the internet article from Windows explaining why I am having difficulty sending text messages on my Windows based phone with the new, miracle update is accurate. I am pretending that I have a clue about MMS and cellular something or other. I have had multiple windows open on my laptop. My search has led me to a site from Microsoft who owns the Windows operating system and now all I have to do is understand the therory of relativity in conjunction with world peace and the mechanics behind a thermal nuclear reactor and I will have my precious VPN number. It will then, after multiple inputs and configurations, allow me to send text messages without interruption. The thingy will know when the something or other is going to block a text message from being sent and jump right over that block, which will still happen, and make a connection allowing my important, critical text message stating, "K" to be sent.

None of this would be an issue if I had paid attention to the "windows based" comment the sales person made when I bought my phone. I heard the comment. It was made in passing because the sales person was one of the chosen ones who is not intimidated by such verbiage. I laughed a cunning and intelligent laugh and impulsively bought and paid for a windows based phone. That is why I am looking for a VPN number which will allow the jump over the block and connect me whenever I need to be connected. And I so need to be connected. 

If you need to contact me dial 1-800-Looking For A VPN! !

I Hang My Hat

My large, orange cat just dashed across my chest and onto the arm of the couch. He started to scratch the couch arm, made the motion but kept just above the material. Watching him I realized that all the emphasis we have placed on stopping him from scratching the arm of the couch has finally made a mark stronger than the instinctual mark he has to scratch the fabric. Because he is a cat and a strong willed cat, even for a cat, I was caught off-guard by his choice not to follow through. I anticipated flailing arms at him, saying no firmly and with a loud voice, yelling no in a frustrated, human way that cats bring to the forefront of our natures and maybe the need for the occasional spraying of water while making noises of disapproval.  Instead he placed himself squarely on the arm of the couch, stretched out one leg towards me and fell asleep. If I were not on the laptop he would make the extra effort to place his paw on my arm or my side. He likes a small area of contact. He rarely chooses to curl up in our laps or to be held. 

His name is Tigger. He was adopted by a family who was not prepared to care for him and who ultimately chose to let him go. He was skittish from having been handled and chased after by children. He wanted a home. He settled in with our other two cats without challenging the hierarchy cats establish in their shared worlds. Tigger often seemed invisible. He was quiet and found places to be out of the activity of our home. He was at home though and he shared that impression by claiming space.

Time passed. We took in another cat. Our family of adopted cats now stood at four and we decided that was our limit. The entire "adopt a cat" process began as a response from me to the loss of our dachshund. His death was preceded by the death of our two cats, Rico and Sugar. Sonny, the dog of my life, left a hole the size of a passel of animals in my heart. Still there was no plan to have animals for awhile. I went to Pet Smart just to be around animal stuff and met Max, who became our first adopted cat. Then there was Zeus, then Tigger and then Kitty-Kitty. If we had planned on an animal it would have been a dog. Four cats were not on our list. Little did we know that four cats were perfect for what was to come in our lives.

I don't remember now when my husband began to show signs of the rare and elusive disease known as Frontal Temporal Degeneration. I suspect there were signs long before the symptoms that were obvious and demanded attention. Time has passed and the symptoms have morphed and morphed and they will morph again. I am a full time caregiver and my husband is confined to our home. Our routine is varied and each day is unpredictable yet mundane. But one thing is clear to both of us. We would not be able to look after the needs of a dog. I could not be sure that I could walk him as needed and we never know if stays in a hospital or home are on the horizon. It is evident that four cats are great company, aggravating and, I won't argue, more than a little over the top. I will never know if adopting these feline creatures made any sense at all. Once an animal becomes a part of our family that question has no bearing on whether they will remain a member of our family. It is understood by all of us that we are under the till death do us part commitment. 

When Tigger chose not to scratch the couch and to take a nice long nap instead I realized how far he has come since moving here. He chooses, at times, to be near and to fling himself across me or to jump into the middle of my chest,nuzzle my face and zip off on a mission that is entirely secret. He also chooses to hibernate in my bedroom for hours at a time and, once in a rare moment of complete abandon, he will groom and be groomed by one of the other cats. 

At a time when our lives are dominated by so much that is out of our control and by the tedious day in and day out of caregiving these cats participate in the journey. They are, for the most part, self-sufficient yet needing affection on their terms. We are, for the most part are self-sufficient and need to be needed when allowed.
 
Love works in mysterious ways. It comes to us in moments and in ways we least anticipate. It is on this belief that I hang my hat.
 
 

Any Landing

I worked at a military base for 29 years. They repaired military aircraft. One of the sayings I heard was, “Any landing you can walk away from is a good landing.”
I was reminded of that saying today as I guided my husband to the part of the couch where he sits to take his meals. When I prop him up with pillows so that he can reach his tray to eat he often begins to lean to his right. Slowly but surely he is eating from an awkward angle, doesn’t say a word, just keeps on trying to eat. After months and months of doing this same thing over and over I finally came to the bright idea that if he sat in the right hand corner of the sofa the problem would be fixed. Voila! Any landing you can walk away from is a good landing. Once more I saw the wisdom of accepting circumstances and being blind to obvious solutions and finding it hilariously funny once recognized. Then I wonder how many other processes I am complicating when a simple “move to a corner” will fix the problem.
 
Navigating a wheelchair offers ample opportunities to use the landing saying. Most offices have wheelchairs and all doorways are wide enough to negotiate but the darn entrance is raised up just enough to catch the wheelchair in mid-roll. My poor husband has been shaken, jostled, and frightened by those moments. I do so well with helping him out of the car and getting him into the wheel chair. I learned to pull the wheelchair backwards over obvious obstacles. I did not learn how to get up enough steam to make it over some of the higher obstacles. Therefore I begin with a high degree of confidence and end snagged on the door jamb. Robert experiences being flung around in a wheelchair, being pulled backwards with all the energy I can muster and then snagging with a jolt on the darn golden colored door thingy. Robert loses his cool. It could be the sheer terror of almost being thrown out of the wheelchair.  Every time someone eventually comes and helps pull my husband over the door jam.  It is rarely graceful and often embarrassing but we make it.  I think about the landing we just walked away from. How scary it must feel to be moving backwards with your seat beginning to tilt you backwards and suddenly realizing the person pulling you is out of control. I don’t bring up the “any landing…” saying at those times. I stay quiet. I got smarts real good.

I am clumsy. I trip over a shadow. It is an inherited family trait. There is no clear reason why I do not fall at least once every day. I am exhausted from caregiving and exhausted from thinking and I move like a character in an old black and white picture show. I trip, stumble, catch my foot on a towel or a shoestring or a blank space on the floor that looked like something to me. This goes on all day. The two of us undoubtedly were meant to be together. Robert watches me from the corner of his eyes. I wonder what he is thinking. I never know because he has perfected the phrase, “Oh nothing, dear!” He has smarts real good too.

Most of our days now we are flying by the seat of our pants. We have never been on this path before. Each day begins with a look around and questions about how he feels and how I feel and what’s for breakfast. Each change in symptoms has a meaning but we do not know what kind of a meaning. So we go along as best we can with the day ahead and our minds half in the  drama and half on the t.v. We rarely discuss the future. Heck, we do not have a clue about the future. What, when, where and how are speculations that hang in the air. They annoy us. There is no rhyme nor reason to the pattern of symptoms or to the remarkably good days when it seems all is well. We fly along together dodging first one thing and then the other. I daydream and he sits staring ahead with the FTD stare. His face is in a grimace. He seems in pain but he is not in pain. We land. I help him get up and out and he goes off to take a nap. He stumbles. I gasp. He is in bed. I trip over a shoe while grabbing a chair to stay upright. Whew, I think as I narrowly escape a cat barreling by me chasing one of the “unseen” things in our house. The cats see them. I try to get out of the way. All of us, the entire family are just grateful to be here and to keep it simple. Real simple. “Any landing you can walk away from is a good landing.”

Flying the friendly skies of FTD. It is not for the faint of heart!

Pay Attention

Time flies except when it doesn't. Time in the world of a caregiver is often irrelevant. Days flow into weeks and weeks flow into months. I lose track of when symptoms began or when they ended or who we saw and on what date. Every day is a Saturday. It is an old habit from work. Saturday was a day off and I was home. I am home most of the time now. My mind calls all days Saturday.This creates the curious feeling of being a visitor in the coastal town where we live. I go out for groceries or church or almost anywhere here and I am out of step with the general culture of the working folks and more in step with the visitors. They are on holiday. I may not be on holiday but my frame of reference is from a holiday mindset. Every day is a week-end day. 

It is amazing how small the world can become as the caregiving process continues. I am not sure how this is changing me but I do know that I am changing. I do not have the points of reference I had with the community at large. I don't hear the ongoing stories of friends at AA or at church. I move in and out like an outlier showing up for supplies and a brief conversation with one or two people. It is amazing how comfortable I feel in this isolation. 

In the past month my husband's health has been playing havoc with his body. It is his mind. The doctors cannot find an actual cause for the variety of symptoms that are coming and going. This is the slow progression that could be the fast progression. This disease affects the brain cells, shrinks areas of the brain that tell the body what to do or not to do. No one has an idea how long it will be before a vital function is cut off from brain central. Currently we are experiencing forays of symptoms much like guerilla warfare. 

Symptoms rush in and then out again. His blood pressure is going up and down. The other part of this awful disease is that he is less and less able to identify his symptoms accurately. The immutable truth is that there are no cures. Hopefully we can treat symptoms to provide comfort. Hopefully he will be spared a long, lingering process. Hopefully I will be spared that also. But I am ready to stay the course and my husband is proving to be a brave man facing daily difficulties without complaint. I am learning from him.

Pay attention. We never know when we may be in the presence of people who unexpectedly become part of our learning. I am beginning to understand that precious life and wisdom dwells in every situation as in every soul. Like snowflakes no two of us are the same. There is always a teaching to be found. Pay attention.

Sharing The Burden

I blog on caregiving.com as well as here and for different reasons. Tonight I did a blog on the caregiving site that I am posting here also. My husband has Frontal Temporal Dementia and I am his sole caregiver. The caregiving.com site is an amazing way to share with other caregiver's and to learn from them. If you are a caregiver or know someone who is a caregiver I recommend finding caregiving.com and using the information to your best advantage. Without further ado....

Sharing The Burden

I was just in a chat when someone came on who expressed that she was exhausted from trying to be stronger than she felt. As so often happens in chats or when talking with friends over coffee, a comment will go straight to the heart of the matter. That lovely woman's comment spoke my truth. I don't think I would have known how to put it. She did and I am grateful for her.
There are days when I look around and I wrestle with the feeling that I am a four year old trying to be a twenty year old. I am much older than twenty but you get my point. Wow! Just as I typed that last sentence I got a picture of the National Geographic pictures of women in other countries walking miles to the nearest watering hole and then back home with the water weighing them down on the return journey. I'll bet if we could talk together we would all instantly understand the demands we each have on our lives and we would each say we have no idea how we meet those demands because we often feel far too little to take the next step or make the next decision. I am getting goose bumps. I am having one small memory after the other come to the front of my mind as I think of the times I knew without a doubt I was being carried by a loving God and He was making the decisions through me because I simply could not make them. I was too little. I was too overwhelmed. I was too hurt and sad and frightened of the future. I wanted to be little and have someone step in and take over.
There are many well meaning suggestions for resting and taking care of ourselves and they are all important and do make a difference. I just think there are days when the depth of sadness and grief supersedes all our good intentions. I think what I call overwhelming is often the reality of this journey. It is what Denise has identified as the journey that has only one ending and we are walking that journey, staying busy with all the daily tasks, exhausting ourselves with all that caregiving demands of us. We are walking the journey with our eyes so focused on the moment and then we look up and we clear our heads of the demands on us and we see the ending. We gasp at the ache inside and the sorrow pouring into our hearts. We momentarily fall to our emotional knees. I think this is when we experience the exhaustion of being stronger than we feel.
If we are fortunate enough to have a friend to share with, a group to talk with and this amazing site to use every single day we struggle as we stand up from our emotional knees, we bond together, we meet each other in that tender and vulnerable place and we share the burden. Imagine, if you will, the bond that binds us to each other and the miraculous understanding that on the days when I am strong, I can share some of that with you when you are feeling weak and when I am weak you will share your strength with me. Imagine that bond binding together hundreds of souls who are loving and providing care for someone. Imagine the love and energy of that love pouring out from us into the world of caregiving. We keep what we have by giving it away. This is a deep truth that I have been taught by others. In our weakness we find our strength. We share our burdens. I am deeply humbled and blessed by all of you. Thank you.

 

Just Keep Swimming!

O.K. Beginning two months or so ago the scenarios I am going to mention began impacting the world of myself and my husband who has FTD. If anyone were to ask him, he may know these events but would not relate to them on an emotional level unless he was directly impacted, meaning if the kinds of food he wants are not in the house or the Roku will not function properly. Outside of that he may "know" but he does not relate. I, however, am experiencing it, feeling it, working through it and looking for the humor. Believe me! I am looking for the humor.
As a reminder, I am the full-time and sole caregiver of my 70 year old husband who has been diagnosed with Frontal Temporal Degeneration (Dementia).
About two months ago my left knee began hurting at the back of the knee. I have had knee replacement surgery and blood clots so when I say my knee hurt it was painful to the max. As if that were not enough I twisted that knee trying to help my husband up off the floor. The pain at that moment flashed down to the bottom of feet and up to the bottom of my buttocks. I thought I was going to pass out. I could not put my left foot down and apply pressure without shooting pain. There's more but I will cut to the chase. I was referred to an orthopedic doctor/surgeon. They did an MRI and said chances were good that I could have arthroscopic surgery for a meniscus tear. Phew! NOT! When the surgeon had time to review the MRI thoroughly he determined that nothing less than a total knee replacement would work. Too much junk in my knee and that was the truth, the whole truth and nothing but the truth.
During this time my husband was at a plateau with his FTD.  He could get up and down under his own power, most of the time. Remember: Food! Roku! Happy man!
In no particular order I am going to fill in the blanks on what has happened since I was told I need a total knee replacement. If I don't do it this way I will never get it told.

1. Diagnosis: Need total left knee replacement
2. Gland on right side of my face became swollen and I began feeling run down and possibly with a low grade fever.
3. I was finding new and really old lady ways to walk and spare the knee and was void of any concerns about my appearance.
4. I forgot to complete my time sheets for the money I get paid for looking after my husband. It is not much money but it comes in handy. I had it spent in my mind and had not signed and submitted it in reality.  The money would come in the next paycheck, in two weeks. Big gulp! Electricity was due.
5. I freaked inside about the money and finally got up the nerve to ask my brother to loan me the money and catch him up later.
6. He wanted to do it bank to bank. I wanted western union. He did it bank to bank. It took four days for the money to be available. I still had to borrow money to buy food. Borrow from a neighbor. Oh the shame of it all!
7. I return to the doctor for the follow-up appointment where I learn about the knee replacement. I get a shot in my knee to help with pain.
8. I wanted surgery to be on June 1. Because of that shot to the knee June 1 was too early. I chose August 1.
9. Ongoing battle with the house and keeping it livable, i.e. clean! Losing the battle. Losing it mentally because I have clutter everywhere, my knee hurts and...
10. I get a sinus infection. It is why my gland was swollen. I thought it would go away. No! I went to the doctor and got two shots, antibiotics, Duke's magic mouthwash and a bunch of "to do regularly" stuff.
11. We have an old model t.v. It is the size of a small VW. I used the Roku adapter to use the older t.v. and receive Roku. My husband lost the t.v. remote and the Roku remote. This began the plaintive call of the "FTD Husband", "Did you find the remotes yet?" Repeat this to yourself every fifteen minutes until your own eyeballs fall out and you will understand.
12. We find the remotes! Yes!
13. Roku will not work on the t.v. we had hooked it to prior to the loss of the remotes. It won't work.
14. Plaintive alternative call of the FTD spouse, "Did you fix Roku?"
15. I bought a large, more modern, off brand t.v. from the pawn shop. It had HDMI meaning easy set up and I could not beat the price. I lugged it into the living room, hooked up HDMI and Roku took a deep breath and lived again.
16. Leaving out the times we lost the remotes again and the interventions I made to show him how to use the remotes which is when I remind him that pointing the remote at the ceiling is aborting his original purpose, and looking for something to watch...not counting any of that...tonight, after about a full week of glorious newer t.v. experience, I glance up at the t.v. that works like a dream and smoke is coming out the back and the intoxicating smell of electrical smoke filled my nostrils.
17. I freak out! One, the t.v. could have burnt the house down. Two, what will I do tomorrow when my husband wakes up and Roku is working, if we had a t.v. to watch it on. I can't afford a t.v. from a real store. Tomorrow looms in front of me as I scramble for my thoughts and my ideas. Nope. Empty head.
18. My husband has been on a plateau of relative good days. This week and in the snap of a finger, or so it seems, he has taken a turn into a slump. Typical of the FTD and always surprising to the caregiver. What a mean old disease! He is weak and his walking is hesitant and his legs are stiff and he is running a low grade fever. I consider a visit to the hospital. I make an appointment with his doctor for tomorrow.
19. Tomorrow I take my son to child support court (he does not have a car) and I take my husband to the doctor and I do what I can to make the Roku work with the old t.v. for now and I try to remember to take my antibiotics and other stuff.

When Finding Nemo first came out I began receiving phone calls from friends. They told me I must see Finding Nemo because I was in the movie. I did not have a clue what a Nemo was or how I could be in the movie. I watched the movie and knew immediately that I was Dory! Since that time I have learned to embrace the Dory part of me. In that spirit I titled this blog: Just keep swimming!
Caregiving requires the spirit of a Dory! Just keep swimming! Just keep swimming!
I gotta go. I am thinking of killing at least two of my four cats before I turn in for the morning! They glance my way with scornful looks. They are not afraid! Just keep swimming! Just keep swimming!

Non-Traditiional Easter

A PREVALENT PERCEPTION



THE TRUTH OF THE MATTER
 
“We are closest to Christ when sharing the world’s misery. Think you Jesus came to remove our pains? Wherever did you get that notion? The Lord came, not to remove our suffering, but to show us the way through it to the glory beyond. We can overcome our travails. That is the promise of the cross.”
― Stephen R. Lawhead



ALL OR NOTHING

“Love is beautiful, but it is also terrible—terrible in its determination to allow nothing blemished or unworthy to remain in the beloved”…”He will never be content until he makes me what he is determined that I ought to be.” Pg. 179  From Hind's Feet on High Places


LOVE LIFTED ME

It is better to go stumbling, and weeping, and crawling like a worm along the way of love, than to give up and choose some other way.

Hannah Hurnard

 





 

The Night

The night has ceased to be a time of closure for me. Day and night cycle through the 24 hours meant to hold them and I recognize the passing but take little notice. Every thing I read says this one thing will be the death of me. It was going to be cigarettes. It was going to be drugs and alcohol and then a violent husband and now maybe my weight or the food I eat or the stresses of life. Lord knows, as far as I can tell I have been living with the threat of death over my head for years now yet here I sit writing this blog. I am intelligent enough to know that not sleeping in any defined, normal way does affect me. I just wonder, after all these years and miles and miles of living if it is going to be the end of me. I am weary of thinking about it and pondering the idea of why I don't sleep at night. I think I want to just accept it for now. I think I am in the mood to just let me be me and accept the consequences. It is about all I can do right at this moment. The nights when I do get good sleep make the point for sleeping well. But, for now, I am what I am and I know, from long experience with myself, that this too shall pass. I am 65 years old. I suppose if I die tomorrow it could be said that I died an early death. How do you figure out that kind of statement? Death does seem to have a great deal of leeway. I am overweight and I don't sleep well and there is a crap load of stress in my life. All of that is true. But I am well loved and God fills my spirit with joy and I love deeply. I love people and the sound of their voices and their stories about themselves. I love animals and I love being allowed the honor of being the care giver for my husband and I love life but I am not married to the idea of it. Does that sound weird? I don't think so or at least not for myself. I don't think it sounds weird at all. I am not suicidal. I want for people I love to find their way to loving and being loved. I got sober and clean 33 years ago and there has been very little time that I have actually been physically healthy. Is that the ruler by which I measure myself? I was not particularly healthy as a child. I had malaria in Africa and bacillary dysentery and I believe my immune system was compromised but I can't prove it and I can't see as it really matters at this point. I haven't smoked in forever. I don't drink or do drugs. I know there are so many choices I could be making that would be so much better for me and my health. The energy and the drive to make those choices does not exist in me right now and I am just going to accept that about myself for now. Lord knows, life changes on a dime. I am open to change but I do not plan to go chasing it down the street to catch up with it. And I know ya gotta be wondering what on earth has gotten into me and that this is proof that staying up at night is a problem. But I don't think it is proof of that at all. I think I just need to speak my truth and for some ridiculous compulsion choose to share it as if folks have nothing else to do but read my stuff. But maybe my stuff and my sharing it will resonate with someone and that matters. So, I don't know how much time I have on this earth and neither do any one of you. I do know this though, if any of you are left standing when I go, please make sure they play "Sitting On The Dock Of The Bay" at my service. I do love me some Otis Redding.

This Girl Ain't Playing!

 

OUCH!

$%^&*(*

I found this clip art in honor of my knee. My left knee hurts. It has been hurting for several weeks. I am finished with it hurting. It is not finished hurting. I am a child in an adult body. "Make it stop!" is what I want to scream at the doctor. They are so professional. They are clinical. I want hugs and a profuse outpouring of comforting phrases. I want a lollipop and a shot. No, I want two shots and a couple of pills. No, I want two shots, a couple of pills, eight ounces of good whiskey and a joint the size of a large cigar. Did I mention that my knee hurts? I hobble along like the 65 year old woman I am and I use the carts in the stores and I learned to use that darn cane and I am in pain. No way around it and I will tell anyone who will listen, as a matter of fact I do tell anyone who will listen, that my knee is only surpassed in pain by the kidney stone I had a few years ago. A kidney stone would make me forget this knee and I do not want that thought to go to God's ears. Shush! That was a between me and you thought.

Tomorrow I find out what the MRI shows and we will make a plan. I DON'T WANT A PLAN!! I want the pain to go away. No! I will not try to think about pretty things or go to my happy place and I refuse to utter platitudes nor will I take back the desire for whiskey and dope. Of course I will not drink or smoke a joint but I am not going to lie and say the thought doesn't have a certain comfort to it. I am not that mature. I am not that evolved. I cannot say, in the face of ongoing pain, day after day, "Oh, me? No! I do not think about using substances that may cause me to lose my umpteen years of sobriety." I am not that girl! I am this girl. If it were not for the grace of God and the fear of another bunch of years of destroying my life looming before me you can bet your sweet bippy I would avail myself of those substances. Yes and Yes! But I won't, of course, act on the thought. I may share the thought with people who will not look at me as if I have lost all of my hard won sobriety even if I did not use a drug or a drink. Honestly, all I can think at this moment is, " A pox on your smugness!" And guess what! This is me without a single substance in me. No aspirin or puny little pain pill, NOTHING!

So, I'm just sayin', MY FREAKING KNEE HURTS!

It is unpopular today to express personal moments with such abandonment. Certainly not if it smells even a little bit like you belong on the right or the left. Well, guess freaking what again! My hurting, pain in my every day life knee is on the left side and the knee that is on the right side is feeling real good so draw your own conclusions.

Call this a vent! Call this a little, tiny bit of my insanity showing around the edges! I personally don't give an owl's hoot what you call it or me. Make my knee stop hurting and you will be my new best friend!

The Diversity of Perspective

My husband has a form of dementia. I am his full-time caregiver. I want to be his caregiver. It is not easy for either of us and it has been and will be a long journey. 

Recently I chose to join a few chat rooms at different sites. One is specific to his type of dementia. One is specifically for caregivers and one is the Mayo Clinic chat for caregivers and/or carees.

There are so many people facing incredible challenges as they care for family members. There are people caring for more than one family member in the same household. There are elderly people caring for their elderly spouse and adult children caring for elderly parents. There are carees who are easy to care for and there are those who are unbelievably difficult and dangerous to themselves and others.

Many caretaker chats are great places to get and share ideas of the practical nature. The help is invaluable.

There are also chats that become a safe place for people to vent, break down, ask questions on how to survive the tough job ahead and just generally come apart. 

One of the sites has a trained caregiver consultant in each chat. Tonight I learned from her an unbelievably freeing approach to how I feel about myself and about why I am caregiving and why I need to take care of myself. Not all caregivers see things from the same perspective. All caregivers present with the same frustrations, sorrows, exhaustion, and, concerns. 

Some believe in the use of medication to help control emotional symptoms. Others believe it is a cop out and argue for the whole health approach. Others wrestle with when it is important to make the right decision about long term care in a facility for their loved one. Still others just want to know when it can happen and yesterday is too late. No matter what I question about myself and our own situation there are a variety of options supported and championed by other caregivers. I find this diversity to be a safe place. I am not rejected for wondering when it will all be over and I can have a life again. I am not rejected if I want to place my loved one in a facility now or if I plan to wait. People ask questions and help each other to think through their own situations.

I know cyberspace can be a tool for much harm and evil but it can also be a tool for community and communal sharing with people thousands of miles away that I will never meet but share the same challenges and heartbreaks and successes and victories. 

I probably have at least 20 friends across this country that I have never met in person and probably never will meet in person and yet they know me inside and out and I know them. I met some of them when I was working from home and I have met others through the caregiver chat rooms. This is the new world we live in today. Connecting with others is becoming more fluid and diverse. 

I know the question could be asked about how I know these people are being real. I can't prove it in a court of law but I also cannot imagine why anyone would come into a care giving chat room and fake a painful story of caring for their mom who is ungrateful and difficult and ask how she can learn to manage that situation with her in a more positive way. Besides, if she was blowing smoke, the response she got from the trained counselor helped me immensely.

Like I said...diversity in perspective. Take what I need and leave the rest. My field of the experiences and insights of others has grown exponentially. I am grateful.

At Home

Tuesday night and a storm passed through earlier. The trees are dripping water onto the top of my aluminum condominium. Listening and then writing about the dripping on the roof brought back the memory of my grandfather going outside on Christmas Eve and making noises on the tin roof over the room where we, the children, were sleeping. Of course we were not asleep and, until we were older, we did believe the reindeer had made the noise my grandfather made and, as we got older, we never told him we knew. 

Sounds on a tin roof have brought me excitement, as in thinking the reindeer were on the roof, and they have brought me terror as I, in my vivid imagination, heard trees scratching against the roof and imagined them to be all manner of terrible and heinous creatures. As a child I was frightened in the dark and frightened when standing at the edge of a forest by myself. I imagined each sound to be the last I would hear or each shadow to be an evil character. Thinking back now I realize that my imagination often assigned the exaggerations of a vaudevillian actor playing the part of a villain in an old black and white movie. Those bad guys performed roles with the gusto of the stage. Their eyes were wide and their movements quick and furtive. The shadows hid them well until an unsuspecting and helpless maiden came along and the villain would jump in front of her, eyes wide, mustache twirled with a maniacal grin on his face. Who knew I would assign those attributes to the tall, lazy sunflowers in my grandmother's back yard. They were taller than I and the wind pushed them down towards me at times. I knew, beyond a shadow of a doubt, that they were after me. My grandmother never knew why I balked when she asked me to hang clothes on the line. She thought I was stubborn and lazy. I knew the tall, monster flowers were waiting for me.

 I would earn the label of "crazy" by my father as the years passed and I woke up screaming or began screaming on the way to the bathroom. Catching a glimpse of myself in the mirror of my bedroom sent me into a terror. The moonlight was streaming through the porch windows. I was wearing a long nightgown and had long hair. As I crept toward the door of the room I turned and caught a glimpse of a woman, bathed in moonlight, wearing a long gown with her long hair falling over her shoulders. She was creeping along and looking at me. I lost it. My father lost it. Writing it now I want to laugh at the description. At the time it was real to me and I let out a frightened howl. When I heard my father's feet hit the floor I knew I was in trouble. After I got back in my bed I heard my father telling my mother that something was wrong with me and I might need counseling. This was incredible as my father did not have faith in counselors, therapists or in confessing. I am certain his comment was birthed out of the adrenaline rush he maintained as he returned to bed.
 

Happy Harry the Hippy Man

Happy Harry the hippy man made a hasty decision to extend his stay at the Hula Hotel for the Faint of Heart. He felt the fear of old age and the ache of his bones as he moved across the worn carpet of the cheapest room he could get at the Hula Hotel. His hair hung damp and limp from the humidity of a mid-day heat. He drew a  secret smug delight in leaving his hair long and often pulled back into a ponytail. Happy Harry the hippy man yearned for hair thick enough to braid and wondered why someone such as himself was destined to thinning hair as he grew older. This explained, though he might not relate it to his thinning hair, the tongue stud and a tattoo of a praying mantis dressed in a zoot suit with a top hat perched at a tilt on his head and a saxophone swung around his neck. As if that were not enough the front of the body of the praying mantis faced one way while his head, turned one hundred and eighty degrees in the opposite direction, setting the stage for his diabolical grin. Small notes of music floated up from the saxophone. The tattoo was exquisite in detail. The praying mantis had a deep, rich green body He wore an outrageously purple satin zoot suit over a rich buttery, sunset yellow silk shirt, a blood red top hat and black, custom-made leather shoes sporting spats and a high gleam shine. The golden color of his saxophone appeared to catch an unseen light source producing the unsettling illusion of movement. The music notes floating up from the saxophone were sharply defined and etched in black. The entire ensemble set the stage for the crowning victory of the face of the praying mantis. Sat precariously at the top of his fragile body and turned in the opposite direction of the front of his body the artist had chosen to first draw and then color in the maestro's eyes in the deepest emerald green. Half closed by an exaggerated fold of the eyelid a glint sparkled from one eye The artist captured the glint as an exquisite minuscule diamond.The praying mantis had thin lips drawn back in a smile so perverse that friends of Happy Harry were shocked and confused. What possessed a man like Happy Harry the Hippy Man, they conjectured over dinner and a few drinks, to wander so far afield in his choice of tattoos. Inevitably, one of them would remind the others that Happy Harry had always drifted a tad left of the center line. Everyone would nod and take a sip of their drinks.

Happy Harry believed himself to be the last of a dying breed. He carried himself with an air of barely concealed disdain, except in the presence of the occasional hedonists to cross his path. His ego forgot his superiority in the presence of people he believed crossed the lines of decency without a hint of guilt. Though such characters rarely crossed his path Happy Harry was incapable of responding in anything other than an embarrassing and most unattractive form of hero worship. This trait also puzzled anyone who knew Happy Harry on a daily basis. The old, hip, slightly haughty man they knew disappeared into a fawning, sniveling pawn in the hands of these strangers. He catered to their every whim until the day they left. Afterwards Happy Harry confined himself to his room until he could emerge with what he believed was an air of mystery and secrets. The kindness of his friends saved him from well deserved snickers and snide comments. He was a most frustrating man and yet engaging in the way that oddity often presents itself. In truth no one who knew him would have him any other way. So they shared drinks with him until the mystique wore off, the haughty swagger returned and, some would swear, the praying mantis winked an intensely wicked wink.

How May I Help You?

 How may I help you? 

I hear this question often these days. Well meaning people with good hearts and willing hands ask me this question. I don't know what to say in response. We are loners in our home. The idea of anyone coming in and helping creates a discontent in me. Not that our place is clean and ordered. It is our place. With rare exception we have always chosen to go out rather than have anyone in and the dementia has not changed that about us. 

How may I help you?

This question requires me to think. I shrug it off and run as fast as I can peeping over my shoulder to see if I am being followed by the "how can I help you" people.

 A lovely group of men came and installed an awesome ramp for us. No cost. A friend of mine saw the need, organized the people and they arrived and proceeded to build the ramp and built it professionally as well. We peeked out the blinds and followed their progress. Conversations of our gratitude inevitably led back to their gratitude for being able to help . So I stood and Robert stood a little and we watched and felt cared for and loved and cherished. With the minimum of fanfare they left one day. On to their next project is what I am thinking. 
How did they help me? Obviously the ramp and paying the cost of it was a huge help but how did they help me individually. 

They helped me accept help. They brought everything including the plan, the wood, nails, schedule, water, food and their own conversation. They helped me by beautifying the front of our home and by fixing the steps at the back of our place. They helped me to understand that someone saw us and got it. They got it and they knew where our journey is headed and they understood the road ahead. They helped me to feel less lonely, less alarmed at all the things that need doing. They bore our burden. 

How may I help you? 

Share my burden. Know me. Know my need. 
Understand the journey or ask me to talk about it. Then love me and suggest a frivolous snack. 

Did I mention that yummy snacks play a huge role in helping? They do. I don't know why. They are comforting and child-like and help me experience a child-like pleasure.

How may you help me?

Let me help you. Ask me to do something that will help you. It sounds odd but helping someone else is the greatest way to get outside of suffering and into relieving suffering. Keep it simple but not condescendingly so. 

How may you help me?

Pray. Pray. Pray.

How may you help me?

Love your life. Live your life. Remind me that this too shall pass. Bear my burden and I will bear yours. Inside of that is a truth I do not understand. It is true. It works. But I do not understand it.