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!