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.


 

Freedom's Just Another Word

At a meeting today we talked about freedom and how freedom was for us and how it is today now that we are clean and sober. I actually took notes because some of the comments caused goose bumps to rise up on my arms. I chose to go first because one of the on-line chat rooms I belong to posed a question to us this week-end asking what we had given up to be caregivers. I did not give the question much thought at the time but the moment I heard freedom was the topic of our meeting today I knew I had my answer.

But first I want to share with whomever reads this blog when I post it to Facebook a little of what I heard from other people. Keep in mind that we are from all walks of life, varying ages, no commonality other than we are all going through this day without drinking or taking a drug. Wisdom, in that environment, can come from a person who would qualify for "least likely to succeed" in the high school year book. 

A gentleman I have never met showed up today and talked of freedom. He spent time in prison. He said freedom was being able to have cold orange juice in the morning. He went on to say that he had always wanted a home to call his on and he finally achieved that goal and had been living in that house in Florida believing he had found freedom. But the house became a rock around his neck because of taxes and insurance and he began to see the house as a prison. Someone, through a long set of circumstances, asked him if he would like to live in a house they have here in North Carolina and he said he did not think twice. Now he is living here with a rent he can easily afford and has his stuff in Florida but doesn't know if he wants to go and get it. He said he now knows freedom and he knows that he is free to drink or not to drink, free to live here or in Florida, free to ruin his life or to learn to live a new way and he is happy. Very, very happy.

Another man shared that when he used the information we provide in our group he was able to admit that he had compulsions he could not control and that he could not control them by himself so he hooked up with us and life has become kinder and gentler. He said he is learning to be free of self-reliance and free of doubt. I have seen this man from time to time and I remember when he was full of anger and resentments. It is clear to me that he knows a new freedom. 

Another person spoke of being free of the need for justification. and being free to love God.

Each person spoke of having been in bondage to their own selves and of how they use to believe that freedom was doing exactly what they wanted to do when they wanted to do it. They said they were wrong and now they have a freedom that is real and for which they are grateful.

I shared that I spent years self-obsessed and controlled by bondage to self. I had my nose in my navel, figuratively speaking, and could not and would not see life from any other perspective. I, too, thought freedom meant doing what I darn well pleased without boundaries. I shared that now I see committed marriage as freedom and I see living as a responsible and contributing member of society as freedom and care giving of my husband as freedom. I am choosing of my own free will to live the way I live today and I am no longer controlled or bound by the burden of my self. Self-will run riot. A prison with no bars and with no jail keeper yet it held me as tightly as any prison bars with guards could have held me.

It is a puzzle how choices that now require more of me and often confine me feel like complete freedom. I guess it is because I am choosing out of a sober mind and out of a mind surrendered to God. Everything around me is open and full of hope. And, yes, like my friends, I can go and get back my old ways anytime I want to do it. I do not have the desire for those ways. I am free and I am happy in that freedom. 

God brought me to this point and He will continue to pave the path of my life in Him. I will often wonder if anything is going to work out and I will find out, as long as I leave myself free to hear Him speak, that everything is going to work out and in ways that I cannot think or imagine.

I’m using this freedom language because it’s easy to picture. You can readily recall, can’t you, how at one time the more you did just what you felt like doing—not caring about others, not caring about God—the worse your life became and the less freedom you had? And how much different is it now as you live in God’s freedom, your lives healed and expansive in holiness.

Romans 6:19 (The Message Bible)

It Is O.K.

Long is the night  a cold wind blows,
and an icy rain falls,
appearing in the light of a streetlamp
as streams of sparkling drops falling from the heavens.  

I avoid squishing bugs if I see them first and I always throw back any fish I catch. I apologize to trees when cutting them down for wood to heat with in the winter and I ask the ants politely to stay outside but they often violate that request much to my chagrin. 
I open doors for people and say thank you, please and "beg your pardon".
I adore the impish playfulness of small children in shopping carts and of elderly people when they are caught off-guard by something they have done that turns out silly. 
I cry when I am overtired. I cry when all evident options have been exhausted to no avail and then I wait on God and He is faithful.
I love to ride along highways and roads I have not taken before or return to places I have not seen in quite some time and I cherish the deep angst I feel as memories from long ago flood my mind as I drive by old, familiar places.

With little effort I convince myself that my grandmother is still sitting by the window of her house watching the traffic go by on the nearby road. I convince myself the lights are on as night falls and I know she has probably hidden candy in the sides of her chair or in her pockets despite the doctor's orders. I remember holidays, summers, reunions of the past that were held in her house and yard. I convince myself that time has frozen and, were I to drive by today, life would be as it was and this craving in my heart would be satisfied.

And...I love waking up from a nap with one cat on my lap and another draped over my chest, both sound asleep and snoring gently. I wait to move them off of me until I begin to feel their weight as a burden and then I gently push them off and onto the floor. Minutes later they have found another place to snuggle down and sleep. They dream of jumping with abandon from chair to couch to chair. They dream of knocking over glasses and kicking car keys behind coffee tables knowing it will take a long time to find those keys and they laugh in their dreams as they think of my scolding them and spritzing them with the water from a spray bottle. They run from the water only to return to the exact same spot moments later. 

I love the wind and the rain and the sun and the shade. I love the smell of the ocean, frying bacon, freshly cut grass, t-shirts with the faint scent of a loved one lingering on them and I love the time I have left to love. 

Standing at the ocean's edge, salt spray blowing onto my face
aware of the vastness stretching out before me
aware of my finite self
and it is o.k.
It is o.k. with me.

Ignorance And Some Quotes

“An offended heart is the breeding ground of deception.”

John Bevere

“Bitterness is a root. If roots are nursed—watered, protected, fed, and given attention—they increase in depth and strength. If not dealt with quickly, roots are hard to pull up. The strength of the offense will continue to grow. We are therefore exhorted not to let the sun go down on our wrath. (See Ephesians 4:26.) Now instead of the fruit of righteousness being produced, we will see a harvest of anger, resentment, jealousy, hatred, strife, and discord. Jesus called these evil fruits.”  John Bevere