Mom

companions

One of my companions during this journey has been fear. I have come to know him quite well. I know his smell. Its vaguely the smell of burnt coffee mixed with a sweet perfume. I know the taste of fear. It is metal. It collects in the back of your throat, lump-style, and feels like it might choke you.  Fear pops up randomly sometimes. Other times it is when you receive news that should scare you. Fear doesn't miss the opportunity to make sure you know he is there. I have read, discussed, cried, begged, shouted and swore about how to get rid of this unpleasant companion.  The last article said I should bring light into the situation to offset the darkness of fear. The method it suggested for bringing light in was to do something to fix the problem that is causing you fear. The treatment I am going through is what I'm doing, but its pretty scary itself so it doesn't bring much light in.  But there are other forms of light. Yesterday I spent hours on the phone with a DNA consultant that is doing genetic research on my form of cancer. I was wrecked after the conversation and fear offered to come sit with me and keep me company. I let him for awhile until the rainbow man appeared and filled my house with rainbows.  And then the crocodile woman came snapping at my pain and bringing me comfort. Fear started easing toward the front door. And there are others who show up with laughter and such caring that fear begins to gag from all the love and has to take a break.  I know he'll be back but everyday I find new ways to keep him at bay. And if I can't then I rant and rave and cry and that brings some relief and fear backs away a little. I am not by nature a positive person but by the time this is over you may not even recognize me. Or at least maybe fear will be a little less likely to want to hang with me.

everyone loves Raymond

I am home again. I went to Florida for my mother's memorial service. I spent a week there enjoying Quality time with my favorite (and only) sister. Loads of tears and laughter, sadness and grief and just being together.

My flight home was a nightmare. It is usually a one and half hour flight. This time fog prevented us from landing and we were diverted to an alternative airport and ended up spending six hours on the plane. But obviously I survived without going into a panic and screaming at anyone.

Today I was determined to write but a refrain kept playing in my head saying how much I don't want to live this life I have now. Finally, I was able to talk back to that negative voice and say this is the life I have now and I am determined to make the best of it and enjoy life as much as I can. There are things to be grateful for...

ok Denise, not profound or humorous as something you could write but.. I did write 3+ sentences  ...it is a start.

It is what it is...

Yes my life is still topsy-turvy, surreal almost. Since this summer my father has moved into an assisted living facility. Sometimes he loves it and sometimes he is confused and frustrated. My mother will pass any time now...probably today or tomorrow. Wise Owl is away again, and we hope daily she will return with the strength and beauty that we know are inside her. And if all this wasn't enough cancer has now fallen into my lap. It is not an easy cancer, treatable but not curable and I have just started chemo treatments. I haven't been able to do what I usually do for others, like go to Florida to be with my family, to spend more time with Wise Owl, not being able to work...I am feeling useless and irrelevant. Not sure who I am. But there has been so much love extended too. My husband is amazing, my family is loving and friends have provided food and support in many different ways. So as life tends to be, it is a mixed bag. Sometimes I have dreams of running away to Bali but that being a nonsensical fantasy I will trudge on following the only path I have at the moment...

down on mainstreet

A holga journey down Main Street:

chemo wigs and other fun

Everyone home from the hospital and we are trying to find a rhythm to our lives. We have home health assistants, hospice nurses, social workers, physical therapists, occupational therapists, etc that we must schedule and open our house to as they make their mandatory visits. Often we are tired and exhausted but every once in awhile there are moments of mercy and grace that swoop in unexpected and refreshing. We are grateful for these moments.

A family dinner recently was spent in laughter as we talked about our day and remembered funny stories from the past.  The good feelings hovered in the air around us and we felt hope...at least for a bit...at least there was that.

Transitions

warning: there may be extreme expressions of emotions and sentimentality that some may find offensive.  For those who are or know my family you will understand I hope.

I take Dramamine when I fly. So when I arrived I was just a bit groggy. My flight arrived on time, my bag appeared in a timely manner and good friends drove me to my mother's house to pick up her car and head for the hospital. My mother was coming home that day. I drove there with no problems, got the room number from my sister, left the car in valet parking and hurried inside. The room was missing though. I walked up and down the hall in my Dramamine fog but there was no such number. I finally went to the nurses' station and found there was no such room number in that hospital. I felt irritated and confused until it hit me...I had driven to the wrong hospital. Both my parents were in the hospital...less than a mile apart from each other, on their 61st wedding anniversary, no less. Dad was in because he had become suddenly weaker, leaving him unable to walk, even with the walker he uses to support himself. My mother, who has been battling cancer for awhile was admitted to the cancer hospital due to pain. The oncologist did not bring good news and palliative care to reduce pain and alleviate discomfort has begun.  Since I was in the same hospital as my dad I ran up to the physical rehab unit for a quick visit with him. He was greatly amused that I had driven to the wrong hospital. He seemed happy to see me though disappointed that what he thought was a bag of popcorn was actually just my purse.  My father's dementia has worsened and even more so when out of his normal routine.  Finally arriving at my mom's hospital room I was struck by how small and frail she looked. But once she smiled and I held her in a long deep embrace I felt better. The hospice nurse was there, they were discussing assisted living facilities so that my parents could be together in a home that provided my mom the help she will need to care for my dad. She has been his primary caregiver for many years. She has Herculean strength and a stubborn constitution that has served her well. But this latest cancer pain was taking its toll and she would not be able to care for him as she always has.  My sister lives with them and helps as much as she can but she must work so we have to find some solutions. The entire prospect is overwhelming and discouraging. My sister shut down after I arrived and let the fear wash over her in waves, leaving her quiet and withdrawn.  The fear and despair is almost palpable at times.  I want to be the one that brings peace and calm to the situation but what can I do?

After bringing my mother home she wanted to visit dad as it was their anniversary and insisted on taking herself.  She came home in tears, overly tired and exhausted. It had been one of his difficult days and nothing she did or said could please him.  This journey...this transition will be a perilous adventure for all of us. A friend talked to me before i left about how to handle it all without being engulfed by the emotions. She suggested I hold the space...be there but don't try to 'fix' everything. I am practicing holding the space, pausing, responding not just reacting and, most of all I am practicing breathing and trying to be in the moment.

Later my sister, my mom and I enjoyed a pleasant evening talking and laughing and just being with each other. It was a gift that I will cherish. I have always loved my family but times like these make you realize even more about each of them and yourself.  My sister is a beautiful, generous, tender-hearted soul. My mother loving, lion-hearted and brave.  Despite the difficulties ahead I love being with them.  I am grateful I have the time to be here to help if I can.

I will spend the summer here and we will see...

kaleidoscope

broken, smoldering, pleading yet

sometimes a flame of crimson...blazing,

bright and fierce...too hot to touch...

we cower in terror

 for she who comforts also burns

spinning in tiny circles, floating above

in a perplexed and weary refrain

the edges blur into a cacophony

of pain and despair

Grey, smoldering ashes with

tiny sparks of fire that flare and fade

into bleak and somber quiet. 

in the quiet she dreams

a muddled  kaleidoscope

of all she was and wants to be

snowmen ride on swans

and demons haunt her sleep

soft skin, gentle scent of 

something akin to life and love

rising in the night to pacify

the fretful fears of the weak and helpless.

unyielding embrace of solace hold me now