Hope for 2011: Memories of a brother gone too soon



An early version of Disney's Pluto. This toy belonged to my mother.
My brothers and I would tease Pluto for hours with the magnet hot dog.
We would fight for control of Pluto and I never tired of playing with him.
My sister-in-law Kay sent it to me in our Christmas box which was opened late.
She told me my brother  loved this toy and thought I would like to have it.
I have placed him in the curio with my mother's and grandmother's treasures.

Let me tell you a little bit about my brother. He was born just a little over a year before me. What a great big brother he was.  Always there for me, for my Mom, for my brother. He never let any of down on anything. That was the kind of father he was as well.  He was also a genius. I have no written proof of this, but he managed to finish Northrop Institute of Technology with a college scholarship in 2.5 years.

There was nothing he could not do. It was hard for me following him one year behind in grade school.  I was always compared to him by the teachers, and I just was not a genius and could never quite measure up.

This is not meant to be a eulogy or a goodbye. He has been gone awhile. I have three family members affected by concussions and brain injury, separate from my husband.  As I learn more and more about head injury, concussion, and resulting neurological problems related to the changes in the brain, I believe my brother suffered a severe brain injury that may have changed his life forever, and possibly shortened it.

The day after he graduated high school, at 17, he was playing baseball with some friends.  He threw a pitch that connected with the batter's bat, and the line drive went right back to the mound into my brother's left eye and skull. He spend several days in the hospital with an egg on his head barely visible through the bruise. He lost all of his peripheral vision and all color in that eye.  What it may have done to his brain is unknown, since this was during the 1960s.  His health slowly deteriorated, and he was never able to get his blood pressure controlled, then developed diabetes. He died from complications of that disease, from a heart attack. He had been sleeping with oxygen for awhile for sleep apnea. He has been missed for many years and will continue to be so.

My son also hit his head when he was five years old, riding his big wheel. When I got home he had fallen asleep, a large egg on his head and did not know me.  I do not believe it has affected him much, and hope that is true. The doctor I took him to said a mild concussion. Thank heavens we have helmets now, at least. 

My father used to build airplanes in the 1950's, and when I was 5 years old he was late coming home from  work. He arrived home by a car I did not know.  He had been testing the air pressure in the cabin of one plane, and somehow it had gotten too high. It burst his left ear drum. He was never able to hear out of it again. I wonder if somehow it also affected the way his brain worked.  He was not the easiest person to live with, and I suspect that something happened to his brain that day that set him onto a path of irrationality.

I am adding a link to this page so that we can all keep each other aware of the dangers of head injury and the difficulties in declining health.  The evidence to my wondering and speculation is beginning to be established. 

In 2011, I hope the research continues, our knowledge grows and our loved ones are protected more than ever before from Traumatic Brain Injuries. 

Is brain injury a disease or a disability?

I love the Pluto toy as I loved my mother and brother.  Thank you both for wonderful memories.  To my younger brother: You can play with Pluto next! His string is still attached and it works like new!

Christmas season: Yes Viginia There Is A Santa Claus



Dinner with Bill and his brother and sister-in-law during the holidays.

This has been a long three months. I don't even know how to begin this morning. These are four photos that represent positive changes in our life.

Sadly, Bill's health is still a critical issue, but we persevere and hope for continued growth and recovery. 

You know that we live in an apartment complex for active adults over 50.  I fear that our medical system is making it very hard on many people who need assisted living or continuous home staff to receive it.
Our neighbors moved in about 2 months ago, but have both been taken away in an ambulance and will be going to a nursing home.  I do not wish to violate anyone's confidence or rights, but I feel so sad for this couple.  I hope they will at least be able to stay together in one room. 

I worry about the days when I may need someone to look after me, as I do Bill.  It is a concern that I face often, and we try to deal with the best we can.  Full time care through Bill's TBI program is available to him. But because he has a natural support...that is what spouses are called in the system...I continue in the role as advocate. The balance between wife, best friend, caregiver, driver and nurses aide all add to the confusion in our lives.  We do have some emotional support and it is growing.  Hopefully some physical help will become part of the picture soon. 



Brad and Bill the day after Christmas.
Just when you think there is no Santa Claus he shows up!
A joyous father and son.




Bonnie and Brad delivered our present.
A 32 inch flat screen LCD television.
I think we were the last 2 people in this state without one.
Both Bill and I are touched, overwhelmed and speechless.



How can we talk about Christmas with mentioning
the baby born that night  who said forgiveness is key.
Without it, we might just as well hang it up.
And you know that we are fighters and will never give up.



Christmas Eve: Sharing our life after brain injury

The stockings were hung by the chimney with care



In hopes that St. Nicholas soon would be there




Roasting our chestnuts by the open fire
then into the dining room for an
incredible dinner, our gift to each other. 




Waiting for Christmas Eve service
at the church near the Inn.
Our poet Emily would love that
certain slant of light only winter provides.

No matter how hard we try, our lives are
forever changed.  Day by day we move forward.



Caregiving in Winter: Just part of Living with Brain Injury



Birch trees in front of the Four Chimneys Inn
Robert Frost loved a ride on a birch tree

Temperature regulation is another part of Bill's brain injury that has been pretty well controlled but decided to make a comeback last night after dinner. After I brought his temperature up, and the confused eased off, he went to sleep.
After a call to our internist this morning, they said it is another one of those judgement calls we caregivers are asked to make. Daily.  I think caring for someone and loving them is the hard part.  I am sure there are caring paid staff who care, but for families who love and are asked to make these judgement calls, it is doubly frightening. We are not afraid of losing our job but our loved one.  I do not mean to be insulting those of you who are committed staff members, I know many who care very much. I am just trying to share the added stress that caregiver spouses and family take on every day.

The bleed at the back of Bill's brain is very near the brain stem and his temperature can fluctuate...mostly down, so winter is particularly difficult for him.  We should move to a warmer climate, and one day that may be possible. Just not this winter. 

We enjoyed our visit to Vermont and wanted to walk to Robert Frost grave, but the path was buried under 10 inches of snow and the grave was covered. At 400 feet away, and 10 degrees, I thought it might be the better part of valor to let it go this trip.  For us this winter it was The Path Not Taken.  It will be there in the Spring. 

The day before the snow fall we did walk down Main Street and found a fascinating book about Robert Frost, commenting on a collection of his own poetry. I will include the title of the book here, and perhaps you other Frost lovers may be able to order it.  I cannot look at a birch tree without remembering his poem.  He talks about its creation in this book. 

I have learned more about birches living in the East due to the ice that can break the branches, which are very flexible. I had planted three together in my home in California and loved to watch them sway in the wind.  Caregiving is like birch trees.  Many branches, trying to be as flexible as can be, but occasionally an ice storm will come by and threaten to break one off, or snap it in half.  That's the time to take a break, caregivers, warm up as best you can, and let yourself just be.  That is my plan for today.

The book I refer to is Robert Frost: The People, Places, and Stories Behind His New England Poetry, by Lea Newman, New England Press, 2000. 

The Birches by Robert Frost

When I see birches bend to left and right

Across the lines of straighter darker trees,
I like to think some boy's been swinging them.
But swinging doesn't bend them down to stay.
Ice-storms do that. Often you must have seen them
Loaded with ice a sunny winter morning
After a rain. They click upon themselves
As the breeze rises, and turn many-colored
As the stir cracks and crazes their enamel.
Soon the sun's warmth makes them shed crystal shells
Shattering and avalanching on the snow-crust--
Such heaps of broken glass to sweep away
You'd think the inner dome of heaven had fallen.
They are dragged to the withered bracken by the load,
And they seem not to break; though once they are bowed
So low for long, they never right themselves:
You may see their trunks arching in the woods
Years afterwards, trailing their leaves on the ground
Like girls on hands and knees that throw their hair
Before them over their heads to dry in the sun.
But I was going to say when Truth broke in
With all her matter-of-fact about the ice-storm
(Now am I free to be poetical?)
I should prefer to have some boy bend them
As he went out and in to fetch the cows--
Some boy too far from town to learn baseball,
Whose only play was what he found himself,
Summer or winter, and could play alone.
One by one he subdued his father's trees
By riding them down over and over again
Until he took the stiffness out of them,
And not one but hung limp, not one was left
For him to conquer. He learned all there was
To learn about not launching out too soon
And so not carrying the tree away
Clear to the ground. He always kept his poise
To the top branches, climbing carefully
With the same pains you use to fill a cup
Up to the brim, and even above the brim.
Then he flung outward, feet first, with a swish,
Kicking his way down through the air to the ground.
So was I once myself a swinger of birches.
And so I dream of going back to be.
It's when I'm weary of considerations,
And life is too much like a pathless wood
Where your face burns and tickles with the cobwebs
Broken across it, and one eye is weeping
From a twig's having lashed across it open.
I'd like to get away from earth awhile
And then come back to it and begin over.
May no fate willfully misunderstand me
And half grant what I wish and snatch me away
Not to return. Earth's the right place for love:
I don't know where it's likely to go better.
I'd like to go by climbing a birch tree,
And climb black branches up a snow-white trunk
Toward heaven, till the tree could bear no more,
But dipped its top and set me down again.
That would be good both going and coming back.
One could do worse than be a swinger of birches.

Snow Power: Challenges for today

I see a few of our neighbors have gotten right out there in the midst of a blizzard and gotten into their cars and driven off.  Quite honestly they are lucky to have gotten out. Things have gotten much worse in the past three hours.

I still cannot get to my car because of the high snow drifts. We plan to stay in, and I do not feel like I can ask Bill to shovel, and I know I believe that Maintenance Free Living will ultimately clear a path to my car.  I may have to ask the plow person to move the car for me, but I just cannot force myself out into that cold, blowing snow to do it myself. Between both of our health issues, snow shoveling is not high on the list.  Safety first.

I think that I am wearing down. No serious motivation to go outside, so we will stay in and practice relaxation. Maybe play the Tai Chi tape and seriously get a workout. Maybe by then I will be more ready to tackle the 15 or so feet to the car.  Not a biggie. Just feels like right now, every task is huge.

Bill said the snow blowing in our faces is the worst, and I agree.  It has been an interesting holiday weekend for us, and we will fill you in on that hopefully tomorrow. Lots to process on that. Stay safe today and take care of yourself as well as the one your love. 

(As it turns out, our nurse is snowed in too, so our extra day supply is ready to wait until tomorrow.)

Living with Brain Injury: Acceptance helps us be grateful for each day

I guess two days before Christmas has me thinking about my life. The wee baby in the manger...not born in the spot his mother would have liked for him. She did what she had to do. 

This blog is a journey on caregiving. It is not the life I chose to live when I moved to New York. My career and travel are no longer part of that life. But it is the life I have accepted.  Each day is a gift to everyone of us, especially for Bill who has been reminded so many times and ways he should not be here. 

We hide our sadness from each other many days, and this Christmas will be no different. But this year we are becoming proactive, and planning a joyous two days. Our plan is to literally explore the country of Robert Frost, stop by the woods on a snowy evening, and spend Christmas Eve in the church where he is buried in the yard.

Acceptance of our choices does come magically. It is a daily decision. Let me share a choice with you by the wonderful poet himself...and remember, your caregiving does make all the difference to the one you love.

The Road Not Taken, by Robert Frost

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I,

I took the one less traveled by,

And that has made all the difference.

Candy canes, flowers and caregiving


Yesterday proved to be a challenge with Bill still recovering or whatever it is that happens to him. Another episode. Fingers crosses, prayers upward, that he is well for Friday and Saturday. A two day celebration away that we both need. And maybe a long soaking mineral bath!

My grandchildren helped pick out these flowers for Grandma Ginger.
Jackson particularly liked the candy canes. I think Bill has his eye of them for later today.

A delightful surprise to receive these flowers yesterday, and a reflection in the back of my favorite picture of the two of them.

We will be spending today enjoying lunch with Bill's brother Jim and wife Julia.

When red roses and candy canes from family arrive, and out of town family is nearby, how much better can it get?

Well, it will get better when the baked goodies arrive from other half of the family.

Until then I will keep a close watch on Bill and hopes he is able to recover fully by Friday. We never realize how valuable good health is until it is in question.

My sister in law Julia has many health issues from her youth, and she carries herself with great dignity, keeps smiling, keeps laughing and caring for others. She is an inspiration and I will enjoy seeing her today.

Caregivers, enjoy the fresh air today, the sunshine if you have some, and the fact that you know in your heart that you CAN care for someone another day. Don't let the holidays get you down. It's your love that counts.

I hear Bill emptying the dishwasher and putting away the silverware.  I think it is going to be a good day!

SANTA'S WORKSHOP: A friend in need is the one who is always there.



Santa's Workshop by Thomas Kincaid.
Thank you special friend.



Seizure days for Bill make life a lot more complicated than usual for us. We had both the nurse and the Internist yesterday, both scheduled, but a gift either way.  Medical expertise is often not the forte of primary caregivers. It is not their avocation, but becomes their dedication. And it doesn't come without a cost. I remind myself again, and you, caregivers, that we cannot do this alone.

My years with Bill before the injury were not always easy. In fact they were downright difficult at times.  Marriage has made that easier on both of us. Living together was just not what we wanted to do. But because there was so much tension in our life, my friends from California were very supportive. When I told one particular friend that we had decided to give the marriage thing one more try she said, "If you are going to do this thing, I am going to support you."  And she has been there all along the way.

When I went through a sad divorce and needed a career she supported my move to New York.  When my first wedding plans to Bill were cancelled, unhappily for all, she supported me then. 

Since Bill's brain injury, she has also been there.  Every few months she sends a box of books for me to read. We have introduced each other to new series, new characters, and new genre. And that book swapping and grown to include several other dear friends. 

I had read an article early on in Bill's injury on caregiving. It said tell a few trusted friends that you may call them from time to time and what you say may not be very nice. I have used that advice more than you would realize. And this friend, who has asked to remain nameless, somewhere out there in the vast wilderness of California, has dried my tears, egged me on, picked me up and never given up on either Bill or me.

And the cool thing about this is she is not the only friend like this I have.  I have a number of lifelong friends who watch me travel and move and love me in my nomadic ways, share my pain and heal my sorrow. I love you all.  Unlimited long distance is primary in our budget.

Yesterday, after a worried night about Bill, the doorbell rang. I thought it was the nurse. But it was the florist with "Santa's Workshop," the latest creation by Thomas Kincaid.  My friend in need has been sending this for several years now and the Kincaid Village is growing, sitting in my front window, sharing itself with neighbors as the walk or stop by.  My heart was really touched.  Such perfect timing from a friend who just knows. It was so unexpected, but brightened our day.

Flowers and red roses especially are always nice.  But a friend who "has your back" when you are too tired or worn down to stand up, who reaches her arm down into the pit and says let me pull you up, I have a new book for you to read!  Or a friend who is always there for a phone call where sadness and grief will be shared, is what I call a friend indeed.  Thank you Anonymous Friend somewhere in the vast wilderness of California. I love you. Merry Christmas!

Please feel free to leave a comment to let my know you have been here and if these stories of support are helpful to you.  I appreciate the time you take to visit us on our journey.

CAREGIVING 102: Sugar and Spice and Everything Nice....not last night!



Last night felt like anything BUT sugar and spice. It felt like Frogs and snails and puppy-dogs' tails.

Bill's seizures often come on Sunday nights around 6, after a quiet day, and when the doctors are all home with their families.

He is better this morning, but last night I was a few seconds from pushing the 911 button to let the ambulance take him to ER and let them sort it out. But I called a nurse next door instead and she came over and listened to his respiration.

This is the latest thing in our Caregiving at the Gingerbread house. After respiratory failure in October, I don't want to take any chances with Bill's health. But we also think he is often better off at home than in ER. This "we" is the doctor's, Bill and I. 

He has a doctor appointment today and I am glad it was pre-scheduled. I am sore from trying to lift him after he slopped off the bed.  I know better, but the two neighbors I call upon are both 90 year old men! They are both strong, and I have only called them one at a time...my friend said to call them both. I think I will ask the Dr today what to do.

I just now talked with 911 and they said that if he is stable and does not need emergency transportation to ER they will lift him into bed and evaluate him. He can sign not to go if not needed. These decisions are hard each time they happen.

Some days the caregiving is a bit more physically challenging than I think I am up for.  A lot to think about today and in the near future. Thank you all for being here, and for sharing this journey. 

I think Getting a Foothold today will be little bit easier with a gingerbread cookie from my tin can, pictured above.





Living with Brain Injury: Caring for others during the holidays

This Gingerbread "G" is one of an assortment of
Gingerbread's and "G"s in our Gingerbread House.
Thanks to my friend Fran for this beautiful addition.

After our wild day yesterday I felt quite down by 4 p.m. Bill was fast asleep from a late lunch and drive to a town north east of us, through the snow filled countryside. It was fun to see the century or two old houses decorated very Victorian, and feel a bit of Christmas spirit. I guess I was emotionally out of gas. It happens more than I like.

My excursion to the post office after a flurry of wrapping let me know we did not want to head anywhere near the highway or malls.  The post office itself was quite enough.

When I arrived there were 15 or so people lined up in our small strip mall substation. I got to the end and man was struggling with one of the boxes they give you there to mail priority.

"Do you know how to put together these boxes?"
I said, "Yes, I've been doing it all morning."

I folded it for him as we stood in an ever growing line behind us. 
"You need tape," I said.  No tape. He grabbed one from the front as I saved "our place" in line, and said he would pay for it later. I held the box, he taped. Then he added a beautiful fleece vest with a card to someone named Steve.  It was from one of our nicest department stores.  A lovely gift. 

We taped the top and then he said where do I address it? I found him a label, he placed it on, wrote the appropriate information. By the time we got to the front of the line I waved my arm to him, you were here before me.  Happy Holiday Steve!

I paid for my own packages, then turned to leave. The people in line were standing there with a glower on their faces, watching the clock for that dreaded time: 12:00 noon! That's when the post office shuts that window! I hope they all got there before then. 

My gifts were small but meaningful to me to tell the people that receive them, I love them each in a special way.  My big box of toys is still on its way to California, somewhere I guess. It has not arrived. I will fret and worry until I hear from my son it is there.  Christmas for five-year-olds and younger is really a magical time.

Yes, Virginia (where the G in Ginger comes from) still believes in Santa Claus.  I hope those elves get busy finding that box of toys for those 3 beautiful children.

Maybe my act of kindness to Steve's Dad in line at the post office will pay off, and the box will arrive on Monday. I hope so.  I just know that the holiday season is very scary this year.  It bothers me that media is marketing the holidays as the savior of our economy. They did this last year as well, and yet more and more people are unemployed and need assistance. 

Christmas is a holiday that is about a savior, but not about the economy.  I have a tin that is a gingerbread girl and boy, that reads Ginger and Spice and everything nice.  But I believe kindness, tenderness, goodness and caring: That's what the holiday's are made of. 

I called a couple of lifelong friends and I felt better by the time Bill awoke at 6 for dinner.  He and I are taking the day off today to just be.  Take care of yourselves today, caregivers. You deserve it.

Week Before Christmas Madness: Remember to SLOW DOWN



Bill and Ginger celebrating a few days early

It is late for me to be getting started for the day, and especially on the last Saturday before Christmas. Actually I should be enjoying the morning and waiting for Bill to get up for breakfast. I guess I am doing that by writing this.

I just went into the kitchen and snuck a piece of Emily Dickinson's black cake to have with my coffee.  Wonderful stuff. I see now why her father would sneak down into the kitchen before anyone got up and cut his own piece! It is very rich and it disappears quickly.  The Dickinson's probably had to monitor how big a piece he ate. I have to monitor both of us.

I have so much to do today. Finish Christmas cards, rush to the post office with the last little packages to mail, after they are wrapped and boxed, hang up all the lovely cards that have come in the mail. My friends are so creative and thoughtful at this time of year with the cards they choose. I admire that. Then I have to buy some groceries, clean the apartment and get ready for next week.

But again as a caregiver I have to rein myself in.Slow down. If Bill gets caught up in this whirling dervish he is going to start spinning too and will end up collapsed on the bed.  Pacing, timing, planning are all so important when brain injury is such a problem in your lives. You know what I mean if you live with it, either as a survivor or as a caregiver.

We are looking forward to our days in Vermont, and have scheduled rest periods into our trip.  The only way to make it happen safely and relaxed.  I always check where the nearest hospitals are, but over the years I have learned that if I call 911, whoever if closest will get to us first, and we will let them make the call from there.

Our year and this holiday has been blessed by making so many new friends this year who have been supportive of our situation.  And for the long term support of so many of my longtime friends who make such a difference in my life. It isn't always easy for them to understand, but I think we have made it this far through commitment, sharing, learning to communicate in a new way, and discovering who that new partner we married has become.

We are both different than before the brain injury.  But I think that is true of married couples all over, with or without brain injury. Commitment and communication are two keys to any marriage.  And we all change. I hope we both are better people than if we had given up years ago. 

I have a little time to myself to get something done before I wake Bill for his medication and breakfast.  I find I don't move nearly as fast as I used to.  Caregivers, please take time today to take a walk, a break, read a book, and ponder how lucky you are to do what you do.  I am proud to be one of you.  So many of you are true inspirations.

Living With Brain Injury: It's all about choices



My husband Bill said he never wanted to miss Christmas again. This looks to me like a happy man who is choosing Quality of Life over chronic illness.

As one of my neighbors was overheard saying

while watching a sporting event, "HIP HIP HOORAY"

You go Bill!  So proud of the changes in your life

and the challenges you have overcome!

He's come a long way from the man who left the hospital at the end of October this year after respiratory failure and pneumonia.

You wouldn't even recognize the man who left the hospital in June of 2006. Thank you to our friend who took this picture yesterday and has been here for and before this long journey.

Merry Christmas and the Happiest New Year Ever.



Busy snowy day

When we return we finish the Emily Dickinson
Black Cake. Fruit is now soaking in brandy.

One of those rare days you would rather stay inside! A bit nippy and snow falling, but we have a long standing medical appointment 20 miles away.  We will be stopping at a friend's home for lunch on the way back.  Bill has not seen their new house, and it will be a joy to share it with him. We can even see his old house from her hill to his.  A beautiful view which ever mountain top you stand on!

Bill and I talked at length yesterday about the dashed hopes of the current home heath experience, and have decided it was due to the whole "Maximize the Medicare Benefit" and say goodbye.  They did that.

But we are going to keep moving forward, relearning and adding skills as we can.  I learn from Bill so many times.  It is amazing what a marvelous brain he has, and how much knowledge and beauty it holds. 

So the team of Gaitor and Gaitor will be out and about for the morning.  Caregivers take heart.  Consider yourselves fortunate, and know you are not alone.

Challenges in Caregiving and Life



Candy Canes at the Ginger Bread House this year



These candy canes are what my 4 year old grandson and granddaughter had at their house last year. He so proudly showed them to me.  They were pretty neat.  His smile and joy and sharing was magical to me. I will always remember that glisten in his eye that these were the signal to Santa to stop here!

I had the same 4 candy cane lights in my closet, and Mike, a lovely man who works with Bill as Behaviorist saw them when we were getting the boxes down two weeks ago. "Oh, these are neat," he said the next week when I was putting up the lights and wreath. He lent his creative talents and thanks to him we have lights this year.

After we took the holiday boxes of the top shelf of the walk in closet, they stayed on our extra bed for a week.  I just do not have much of a holiday spirit this year.  The 3 week hospital stay in October was very hard on both Bill and I, followed by the numerous doctor visits and in home services that seemed to offer new hope that Bill would recover some of his abilities that were lost due to the bleed at the back of his head proved disappointing.

Disappointing is mild for what I feel. I think devastated is more realistic. The loss of hope that was unfairly dashed into the frozen creek and washed away in the melting ice. Can I keep doing this? And if so, for how long? I pride myself in being able to care for someone I love. But my family is calling me today. All things being equal I would pack Bill up in the car and off we would drive west.  But we all know, all things are not equal and he would never make it. And if he did, he is medically better off in New York.

That stage of anger in grief is pretty strong this morning, because the hope that I had is pushing me toward acceptance, the stage when I say to myself, OK. This is it. Bill will need 24 hour care for the rest of his life, and yours too.  I apologize for sounding selfish, I feel selfish, but I just can't quite get my head around not being able to see my family this holiday. I think the holiday compounded with this dashed hope has made it harder than I thought it would be. These are the kinds of discussions I don't have with Bill. I think we both hide our pain from each other everyday/

So caregivers, off of the computer and into the day.  It is 11 degrees here, so I am not going very far! Mostly into another room where I can write Christmas cards and tell people in the world how much I love them. And there are so many of them to write.  My friend Dave always says, "This too shall pass." 

Let me close with a brighter spot. The two pictures below are from a holiday party at Bill's group last week. This was for Bill's brain injury group who hang in there together, and when their family and friends are out Getting a Foothold on caregiving, they have each other.  Thank heavens for the program and their peer friendships.



One of Bill's friends brightened our holiday spirit with this light hearted tie.
Who can resist that big smile of Home Simpson?
Thanks for adding to the joy of the night.



This is the owner of the program who does a marvelous job.
The food and sharing with other family members was invaluable
for all of us.  



Missing a shoe? Some days we just need to smile.

Now this little shoe has been on this window

since Thanksgiving weekend in our mail room.

It is about 3 inches long, so I imagine the tiny

one who lost it must not need it very badly.

He probably doesn't do that much walking yet.

It has captured my imagination, and I thought

I would share with you all. Lots of stories could

emerge from this shoe. Maybe a poem.

It's that kind of day, I guess. Not much to add.

Just wondering to whom this shoe belongs???

Living with Brain Injury: Caregivers Must Take Time to Themselves



The trails through the woods are more than Bill's damaged eyesight can handle, but we love the walk there and back, and this beautiful creek.



I took this one for my grandson. Something made me think he might think this ice bound log was cool.

Yesterday while Bill slept I walked across the road to the park across from where we live. Our building is rather isolated in the hills, surrounded by farms and homes from the past 200 years.  A rather idyllic spot.  When the weather is good we drive around to the other entrance and view the creek from the bridge. Sometimes we sit and swing and listen to the babbling waters over the rocks. Sometimes the community has small events in the pavilion.

It was 46 degrees and heading down fast. Bill and I had already taken a walk. He said to me, "We won't see another day like this until Spring."  He was right. We woke to sleet this morning. I guess living in the great Northeast for 50 some years, he would know!

So while I had nice weather and he was safely resting, I walked to this favorite spot to capture the creek before it froze again this week.  I had some photos from Thanksgiving 3 years ago, when we were still in an Indian Summer. I lost them when the computer crashed and hope I can find some hard copies to share. Winter has crept upon us early this year. 

The walk, the fresh air, running into a couple of friends for a quiet chat were all bonuses. When I returned Bill woke refreshed and ready to help make dinner. 

I was refreshed and able to make dinner...not a small feat for me some days.  No appointments today and it is what we call a free day. We are home like any old couple enjoying a Sunday at home.  Maybe we should tackle the newspaper! 

Happy 180th Birthday Emily Dickinson: A caregiver and more

There has always been something uniquely fascinating about a woman who lived fairly isolated in the world and became one of the most celebrate poets in American literature.

She always gave me hope. I was told she did not start writing seriously until she was 35, and since I wanted to be a writer, I had plenty of time. 

The most valuable thing I learned about Emily this year was from my visit to her home in Amherst.  She not only wrote, she edited, rewrote and edited again.  The most important thing about writing is rewriting, I was told in writing classes over and over.  It was a lot of work.

And the little packets of poems tied together in her dresser drawer by her loving sister Lavinia were her final choices, to that point.

Sadly, Emily died at age 56, just a year older than my mother when I lost her to cancer, the age my father died of cancer, and the age I lost my brother to heart failure. They live in my heart and my memory and in those of my family.

Emily Dickinson's life, letters and poetry have been a gift to the world that no one ever imagined. Her family lived their lives and little dramas, and then Emily attained that state she longed for for so  many years...immortality. 

I hope she looks upon us today with kindness for recognizing her words and her world.
That world was reintroduced to me by a novel, in a dark time in my caregiving. It brought me back to my youth when I was free, in college, a young mother, a wife. A woman who loved to care for her family and a baker. 

I began to read every letter that had not been burnt or destroyed by Emily Dickinson, the research, the many books suggested by the Facebook Page, The Secret Life of Emily Dickinson. I visited the museum for the second time, and I shared this experience with my husband, who is my constant companion and best friend.

And when we arrived at her Homestead, Bill's best friends, the birds of the air greeted him. A nod from Emily for him being kind to me and sharing this time with me.

When we had a medical crisis with Bill two months ago, my new Emily friends rallied around me and sent messages, made phone calls, and let me know that I was not alone.  Many tears were shared at the fear of losing him this year.  Thanks to you all, and you know who you are. I could not have made it though that crisis without you.

Today I am baking Emily Dickinson her own birthday cake, the black cake her father loved.

Thank you Jerome Charyn for your novel of love to Emily, and to Lenore Riegel for have the foresight to realize that this book would touch many lives.

Happy Birthday Emily!

Santa Claus loves Macy's: Braving the Cold

Living with brain injury is a serious task. Bill and I are so lucky. I cannot stress that enough. The holidays make the isolation even harder for caregivers and those they care for.

If I had my choice of where to be this Christmas Eve it would be handing these Smurfs to my grandchildren or hiding them under their tree.  My son and his wife will do that.  And I would be hanging a huge stocking full of everything for my oldest grandson. But I will not be there. I know how hard the holidays can be for me, and so Bill and I will be having a special time overnight in Vermont at a Bed and Breakfast where we are friends with the owners. My plan is still to make to California next Christmas, and that will be a year long goal for me to accomplish.

Last night we attended a dinner/support group in our area, but with a 30 mile drive in the dark, we did not stay too late.  When we were leaving the restaurant we were struggling with our coats, and gloves and hats, my "medical" bag and purse. We were helping each other getting ready to brace the cold wind and rush to the car, only about 20 feet away. Then I heard the song that was playing in the background, "One is the Loneliest Number That There'll Ever Be," from the late 50s or early 60s.  At that moment I said to Bill how lucky we are to have each other to do just what we were doing.  Helping each other brave the cold.

As we left the restaurant a car pulled right in front of the door blocking our path. He had stopped to let his elderly mother out and bring her inside before parking the car. He and I looked at each other and he said, "Oh, sorry." We started laughing and I said, "Perfect timing. You do what you have to."  He was being kind to his mother, which as a Mom, I know is so appreciated.

I know many of you will be alone this year and have lost loved ones recently. This Christmas will not only seem bleak, but be lonely. I encourage you to find the support wherever you can.  I love my friends and family, and the time I spend connecting with you on Getting A Foothold.  It is really helping me. I hope it helps other carers as well.

Let's remember, we're all in this together!


It's Beginning to Look a lot Like Christmas: Waiting for Butterfly Wings

At least from the outside looking in, things are beginning to look festive. That butterfly in the center of the live Balsam wreath was a gift from my daughter-in-law Sara. We were shopping last year on our visit during the holidays when Bill and I were visiting my family. She knew I would love it.  She has such a flair with decorating, cooking, design, mothering, you name it! That's our Sara. And she is a wonderful wife to my son Chris.

So this butterfly is still with us, reminding us of the fun we had last year, and the promise of joyous beauty coming from dark cocoons. The isolation many caregivers feel is not unlike a cocoon. The outside is closed up, wound tightly, but the growth continues unseen.



If you are caring for someone now, and we know there are millions of you, please take hope and care and comfort in the wings of beauty that will give you flight from this growth period.

It was funny this morning, because just as I was ready to snap a picture of the front door Bill opened it, wearing his cute boxer shorts, no shirt and a big smile! I started laughing and said "Open it again!" But he didn't fall for that. This guy has some real cute legs, but let's not add more insult to injury. He lives with enough as it is.

His friend Mike came yesterday afternoon and he and I gathered the greens and lights, duct tape and wreath out to the front yard.  It was 20 degrees, but so much fun. Bill was grateful to have the lights up without having to stand on a chair in the cold. 

Yesterday we had an early appointment, and it was snowing. Bill wanted to brush off the car and I said go ahead.  I worry about him falling, but since there was no ice then, he did it and it was a treat for me and for him.  Sadly by afternoon he forgot that he had done it.

Creating memories, living daily life, all is a momentary process. Perhaps in a month or two he will recall cleaning off the car. The ice is back already this morning, and with his brain injury we do have to be so careful.

I will tell you what the appointment was yesterday:  my appointment to have my teeth cleaned.  Bill is very kind to me and only gets frustrated with me if I do not take care of myself. I had not had my teeth cleaned for two years due to both money and health issues on both of our parts.  He put me on notice last month when I received a discount card, that I HAD to have my teeth cleaned and x-rayed in December. No excuses!

So I did. He may not be able to remember what happened a few hours ago, but in his heart lives the reality of taking care of those he loves.  I have always loved that heart of Bill's.  And his legs are pretty cute, too!



Living with brain injury: Caring with love

One thing about me I have learned is "out of sight, out of mind."  And why hide our treasures and things we love, anyway.

A friend told me once I have a peripatetic brain, like his. I took this as a compliment, but I know it is really difficult to follow sometimes.  I jump from thing to thing, and somehow miss those transitions we all need to make the leap with our speaker.

My bulletin board displays a collection, not a collage, of things I love, care for, and want to be reminded of often. It is above my monitor and changes often. But it is full now. Somehow, things I love are getting covered up, sort of like what is happening in my brain these days.

But I did take a look up from my keyboard a few minutes ago, and amongst my many loved ones and loved items, one stood out.



This gingerbread ornament was given to me by a good friend in Utah 13 years ago. She has been with me since my move to New York, and the friendship with the friend has continued through the years. Bill and I visited her and her husband in their beautiful home in Utah ski country. She recently lost her mother, and I want her to know we love her.



Caregiving is a role I have taken on because I love my husband and do not want to see him in a home or with shifts of various staff who may or may not show up for their assignment.  The idea gives me a stomach ache.  Literally.

 

I don't know where that idea comes from in the middle of this story about the gingerbread ornament, but I think it has something to do with keeping or memories alive and making new ones.  Bill and I are very lucky that we are still able to live in a nice apartment, depend on each other, and are still covered by medical care. That is nothing we take lightly, and with a very confusing year coming up for the economy and the future of Congress, Medicare, Medicaid, Social Security, we take it all very seriously.

 

Like my bulletin board, my brain is filled with serious anxieties.  So is Bill's. Yesterday he was feeling depressed and we decided to just get outside and take an old fashioned Sunday drive. We headed to our Karma Spot, but the hunters were out with the orange vests and rifles and we did not want to walk in that environment.

 

We took the quiet road into town, and saw about a million cars! We decided to follow them, it was obviously a happening!  We ended up in the New York State Museum at a free Chocolate Fest, with numerous holiday vendors. By the time we found a place to park, walked up the hill into a blowing wind filled with snow flakes, Bill's face looked like Ralphie's with his tongue stuck to a pole in A Christmas Story.

 

We warmed him up, had a snack, looked at a few vendors. One was even selling Ralphie's Soap from the movie. Who knew this would be the movie classic that would survive into the decades?  My family loved it by the way.  But I am still waiting for Clarence to make his appearance this season, in the classic 1946 version of "It's a Wonderful Life."

 

We ended our outing in a warm Italian restaurant with pasta and eggplant, and a long winter nap for Bill, a good book for me.

 

So for those of you who want to know what a brain looks like on overload: Here is my bulletin board. But remember this: Caregivers like me know exactly where everything is on this board, and what it means, to me and to those who sent them to me. 

 

 



What's Life Without a Sense of Humor

I think I can find a nickle after I pay for my health insurance bill for the month.

Calling for appointment.  Wouldn't she be great to talk to.

I think it would be a short session.

Lucy is a no nonsense girl!
This picture is actually on the wall in my office, aka, second bedroom.

Living with Brain Injury: Choices and Challenges at Holidays

Just one of the moments we've missed since the brain injury.

This is a picture of my youngest grandchildren's first visit to the pumpkin patch three years ago.

Holidays always make my role as a caregiver much more difficult.

The children are growing up and I am missing it.

Thank heavens for photos and the digital age.

(I also have a wonderful photo of my 15 year old grandson when he was a baby inside a pumpkin shell but I am under strick orders from him NOT to post that!)

Many families are in the same situation, but that knowledge does not seem to help, at least not today.

To other caregivers, and those who feel stranded from their loved ones, or who are alone due to loss, I am with you in spirit.

The best thing for me to do is get as busy as I can with life today.

Enjoy your day, and let's all look for the spirit of Christmas in each other...he is in each of us and gives us our strength.

Living with Brain Injury: Caring Can Be Fun or NOT (part 2) for today

Just spent a half hour on the phone with nursing supervisor for home services.
Make no mistake.  Just because services for those who are "at home" vs. in a nursing home are offered, does not mean they will get them.

I just want written assessments for what they learned from working with Bill for his records. Medicare has paid for these services and we want to see the assessments in writing. And that should be our right.  And where we can go from here. Out patient or not?

Life with brain injury is hard enough, and because of my memory issues, I want these things sent to us in writing.  That seems to be pretty difficult for this agency.

I believe that cuts are coming and coming fast for both Medicare and Medicaid.  We are going to need to rely on each other and our families more than ever. 

Even the fun Holiday socks from the earlier post didn't help with this phone call. Off to get lunch and try to do some exercise today.  Thank you for listening.  Signed: An irritated, rational caregiver.

Living with Brain Injury: Caring Can Be Fun





As long as there are
humans breathing on this earth
As long as lives continue to be restored
As long as love continues
We will all survive.
Care for someone in your life.
And it the load gets heavy...
Wear funny socks.
They are so much fun.
(These socks from the holiday
collection at Target! I love the lights! $1 a pair.)



Living with brain injury: Seizure disorder

Bill with 24 hour EEG monitoring system.
He will be glad to get this off!

Another day in the caregiver world.  Most days I feel like a wife of someone I love, but others, like this morning, I am definitely caregiver.

Bill has had his head wired with EEG pack for almost 24 hours.  In a few minutes we will return to Neurologist and have it removed, hopefully to find out what has been going on in there for the past 12 weeks.

We had such a wonderful summer, and then the headaches, anxiety and hospital stay.  This is also bill paying day, grocery shopping day, and hoping I get everything organized for the next month.  I tend to forget things. Sometimes a bill will get paid, and forgotten, sometimes it will get sent to his trust to pay with the wrong bill attached.

The Social Worker who came yesterday to work on long term planning said that we done everything we can to get Bill in a program that works for us, and so go with what you are doing.  My only option at this point is to bring in supervisory staff for Bill if I need to be away, and that is really unavailable in the programs.

What is promised and offered to get you to sign on the bottom line, is often not the reality of what the can deliver.  And good staff, any staff at all in emergencies does not happen.  It's a rough road to walk, and today I feel the rocks under my Clark's. At least I have my Christmas socks going now! They brighten my day.

 But the road is getting rough and it may be time for the snow boots anyway, given that it is December 1. They have more grip, more stability. If you are a caregiver you already know every little bit of help counts.

Bill wants me to be in a good mood when he wakes up in the morning.  I don't blame him, but this hour to myself, sharing the news of Getting a Foothold, does help me.  There is more to me than wife/caregiver/driver.  Thanks for joining our journey, and kicking the small rocks away from us if you see them up ahead.