December 27

6 months ago today.

Our last hello and our last goodbye.

The end of us,

the beginning of just me.

The Chair

The Chair

You should be sitting in that chair,

your cup of coffee in hand,

smiling at the antics of the birds,
announcing the coming of the neighbors' cat.

You should be,

but you're not.

I should be sitting here with you,

commenting on the day ahead,

filling you in with our plans.

I should be,

but I can't.

Now my coffee grows cold

while I get lost 

somewhere between those birds

scrambling for seed

and my heart

facing the future

without you.

You should be sitting in that chair.

Everything would be better.

So much better.

Single Woman Humor or Where's Bob When I Need Him?

     I am reminded often that living alone has its dilemmas, as well as advantages.  This morning, I experienced one of those dilemmas.  As I was getting dressed, the clasp on my bracelet--the one made with Bob's wedding ring--found a stray stitch on my underwear, in the back, and refused to let go.  Effectively, my right arm was, more-or-less, handcuffed to my backside.  Eventually, I managed to undo the clasp and my right arm's confinement, freeing myself and the bracelet again--but not before having to wonder who I could call to come release me from the grasp of my underwear!!

The Ornament

The Ornament

“First Christmas Together”
the wooden, red-tasseled circle reminds
from its perch on the tree.
“1985.”
My fingers savor the smooth grain
and my heart is transported in memory.
Our “engagement ring”
we called the ornament
with a woven heart at its center.
That December,
Rome had “dispensed” me 
from my vows,
gifting both of us with freedom
to proclaim our love.
That Christmas season,
you dispatched a scrawny pine
from its place on our property.
You were laughing as you dragged it indoors,
your eyes twinkling, your smile broad.
You transformed that pine sapling
when you strung it with lights
and added the blue glass ornaments.
We sat in the descending darkness
holding hands, 
enjoying the lights, the tree,
our first Christmas together--
dreaming of our future.

Thirty-two years later,
my first Christmas without you, 
our “engagement ring”
stirs this sweet memory 
of the beginning of “Us.”

I hold the memory close
and in it, you are here
again.

                      December 12, 2017

Christmas Conundrum

     In early November I happened to spot a good deal on boxed Christmas cards and purchased them on the spot since I found some I liked.  I put them away when I got home and didn't think about them again.  A week ago, when I got down my box of Christmas wrapping for the first time, I discovered I had already bought a supply of cards--probably at the end of last Christmas season.  While they looked a bit familiar, I really couldn't recall having bought them.  Then, as I continued to look through the box, I discovered at least 20 cards (I didn't actually count them) that I had addressed but never wrote nor sent.  These included some addressed to family members and close friends.  I don't have any explanation for why these never got sent, nor do I know in what year I neglected to finish these.  Was it last year?  And if so, what was going on that led to this incompleteness?  If it were THIS year, I would certainly think it was related to the loss of Bob and my lack of desire to write cards--but that is not the case.  I am actually about to begin my cards later this evening.
     So was life more hectic, was I more frazzled than I recall in one of the last couple of Christmas seasons?  I know that Bob was in the hospital in December of 2014--was that the year I didn't finish this project?  At this point, it certainly doesn't really matter, although I have been mildly bothered by my lack of any memory of how this could have happened.  One friend laughingly remarked that this is how "old folks" end up with lots of unused, unneeded items in their homes which their families may discover when helping them move or cleaning out their homes after they've died.  At any rate, my heartfelt apologies to any family or friends who didn't receive our card some recent Christmas.  I have written on the November and December pages in my 2018 calendar:  DO NOT buy Christmas cards!  Hopefully, that will help, come this time next year.

First Christmas

     It's Christmas time again; this year we celebrate for the first time without Bob.  It's time for me to write Christmas cards, and there are a number of people on our list, mostly his friends, who have not yet heard of his death.  In order not to have to write about it over and over, I have made an insert for their cards.  This is the insert:

(The photos in the insert run across the top of the page, but I can't figure out how to do that here.)

Christmas 2017.  Our first without our beloved Bob, Dad, Grandpa.  He entered hospice in March and died June 27 with all of us surrounding him.  After struggling with Alzheimer's disease at least six years, he is at peace.

The photos above are of his last birthday with us, #81, in November 2016; his last Christmas with us; and our last photo together at home in May of this year.

I Never Knew

     Lately, I've been thinking a lot about my Mom and what grieving must have been like for her.  She was 57 years old when our Dad died at 59, leaving her with four teenagers still at home.  As I walk through my own experience of losing my spouse, my Bob, I wonder if she ever really was able to mourn the loss of hers.  I can make my own space and time for that every day if I want to or need to.  Mom had to still be "mom" to all of us, especially to the four still at home.  She had to find a job.  She didn't have the "luxury" to surrender to her grief.  No wonder she seemed to live with an undercurrent of depression the  rest of her life.

     I remember trying to be as present to her as I could, coming home from St. Louis as often as possible, calling her regularly--probably every week, if not more often.  I thought then that I was aware of what she needed, I thought I knew what she must be feeling and going through.  But how could I?  At that time, I hadn't been married, hadn't lost my life-partner, my soul-mate, best friend, dance partner, my other half, father of my kids and provider.  I had no idea how all-encompassing such a loss is--not then.  But I do now.  I am learning each day a bit more about how much harder than I ever imagined the loss of our Dad must have been for Mom who, as I recall, was the first in her circle of friends to lose her spouse.

    I realize, too, that no matter how hard I might have tried to understand Mom's grief, it would have been impossible.  It was impossible to have imagined my own grief  before I was in its midst.  Not that I didn't sometimes anticipate what life might be like without Bob's presence--his illness forced those thoughts upon me more than once over the last years.  Yet no amount of imagining it could have prepared me for the actual experience of what one grief counselor I'm reading describes this way:

    "Grief is what we think and feel inside after someone we love dies, and it is an every-day experience.

     That is, when we are grieving a significant loss, we feel our grief every day.  We wake up each morning knowing that today we will experience hurt and an ever-changing mixture of painful thoughts and feelings.

    Grief's very relentlessness is often frustrating, challenging, and exhausting.

    Our hope lies in small, daily doses of mourning.

    Mourning is when we express our grief outside ourselves.  While grief is internal, mourning is external.  Talking about our thoughts and feelings, crying, journaling, participating in a support group--these and other expressive activities help us begin to integrate our grief.

     Yes, our grief is a daily challenge.  But if we actively mourn, each day in grief can also bring a small measure of healing.  Encountering and engaging with our thoughts and feelings softens them.  Mourning one day at a time brings healing one day at a time."  (Alan Wolfelt)

     Thirty-eight years ago when Mom walked this path, she didn't know, I'm sure, and didn't have time or space in her life to find out that "actively mourning" Dad's death would be healing.  Instead, she believed she needed to be strong for all of us, and to keep her feelings inside.  I can only imagine now what that may have cost her.

A Little Child Shall Lead

     Yesterday Hope and David were here for the bulk of the day because there was no school.  When Hope and I sat down to eat breakfast together, I commented that it was nice to have someone to eat with because I usually eat alone now.  Hope looked up and asked, "Grandma, do you pretend that Grandpa is still here?"  I started to address the word "pretend," but then decided just to respond from her perspective.  "Yes, Hope, I do,"  I answered.  She had more questions:  "Do you pretend he is sitting in his chair at the table?"  "Do you pretend Grandpa is sleeping in bed with you?"  To each question, I responded affirmatively.
     Later in the day, as I returned to a game we were playing together, Hope surprised me with another profound question:  "Grandma, if you die, what will happen to all your stuff?"  I laughed a little and said something to the effect that it would mean someone was left with a big mess and a lot of work to do.  Then I said I am hoping not to die for a long, long time because I want to see what she and David and Frankie will be when they grow up.
     Besides being amazed at the maturity and depth of Hope's thought-processes, I am also touched that she reflects on what Bob's death has meant to me as well as what my dying might mean.  Additionally, I find myself reflecting on the timing of her questions--the beginning of the month of November, the month traditionally associated with death--All Saints' Day, All Souls' Day, the Day of the Dead, the dying of autumn and coming of winter.  I also feel a bit challenged by her second question--what will happen to all my "stuff"?  I know I need to be down-sizing and simplifying now because moving is definitely in my future.  It's a chore I've been putting off for months.  I know some of that procrastination can be excused because the grieving process itself takes a lot of energy.  But somehow, Hope's inquisitiveness has made me feel perhaps it's time to try to put a little more energy in the direction of down-sizing. Doing that, I also would be putting energy toward the Future.  I can almost hear Bob saying, "Yes.  Go on.  You can.  I am with you."

November-ing

     Tomorrow is the first of November.  In my mind and heart, November is about Bob.  His birthday is the 16th.  As the air turns colder every year, as the leaves turn golden along with the sunlight, I am always instinctively aware that Bob's birthday is coming.  Yes, November is also about Thanksgiving and family gatherings and maybe even first ski or snowshoe outings (first snow-shoveling, too, perhaps.)  But Bob has always been at the heart of those events, too.  So November, for me, is about Bob.  

    This year, November adds new heart-connections for me with Bob.  The local culture is very immersed in celebrating Dia de los Muertos, Day of the Dead.  Its rituals are even more elaborate and graphic than any All Souls' Day commemorations in the Catholic church.  Reminders of the event will be conspicuous around town for the next several days. I haven't come to terms with how I feel about all the skull and skeletal images used, but there is no denying that this year there is a profound link between me and Bob and this tradition.

    That link will be made again at a memorial celebration being held Sunday, November 5.  It is hosted by the hospice agency that cared for Bob and is for families of those who have died in this past year.  I hope to be able to reconnect with some of those aides, nurses, and therapists who were such gifts to Bob and to me in his final months.  I expect the service and the sharing after will elicit tears, but I have come to know deeply in these past months how healing tears can be. 

    I open my heart to the entrance of November 2017, knowing it will stir poignant memories and feelings.  At the same time, I trust that because, for me, it's all about Bob, it will be a month when his love--our love--gifts me with unexpected grace and deepened peace.   

Helping Me Cry

     A year or so ago, probably on Facebook, I read a sweet vignette about a little boy who'd gone next door to visit an elderly man who had recently lost his wife.  The little guy was gone quite a while and when he came home, his mother asked what he'd been doing all that time.  He told his mother he had just sat with the man and "helped him cry." 

     Today I thought of that story again when I tried out the other grief support group in town.  I had almost talked myself out of going.  Then, when I walked in, I wished I hadn't come.  There were only two women in the room--the obvious leader and another, older woman.  In such a small group, I felt I'd have to talk whether I wanted to or not.  Both women were very welcoming, and I learned the older woman is about to celebrate her 85th birthday and has been a widow for a little over a year, having lost her husband suddenly.

     These two women, strangers originally, invited me to talk.  As I told--in brief--the story of Bob and the Alzheimer's disease we struggled with, and of his death, I cried and cried and cried.  And, like the little boy on the porch swing with his neighbor, these two women "helped me cry."  They just sat and listened, and smiled gently, allowing me to feel my sorrow.  I remarked to them that I had begun to wonder if I was "stuffing" my feelings since I haven't cried at all in a few days.  But because they gave me a space to speak the story again, the tears flowed freely, as I know they need to do.  It occurred to me as I left the session that that is exactly what I needed from a support group--to help me cry.

Please Rewind

     I want my Bob back.  I want to wake up in the morning and to end every day wrapped in each other's arms.  I want to see the smile on his face, the brightness in his eyes.  I want to watch him glide across snow again, or stride blissfully up a mountain trail.  I want to feel his quiet, loving presence in our home. I want all our togetherness again, everything we shared.  I want it all back.  My head knows it's not going to happen, but, oh, how my heart aches for my head to be wrong.

A Poem

Today

Only a periphery of blue

outlines the cloud-heavy sky

matching

the sorrow-laden quilt 

over my heart--

edged with hope

and sweet memories of my Love.

Loss within Loss

     After Bob's death, a dear friend sent me a book of daily readings, Healing After Loss.  The reflection I read today touched me deeply, especially this part:

    

  "We know full well that our loved one has died.  Do we recognize that in that death a part

of us has died too?

     The part of us that lived in our relationship to that person alive in the world has died.

     The part of us that lived in expectation of a future on earth together has died.

     The part of us that enjoyed the commonality of shared memories has died.

     This is a lot to lose, and perhaps it will be easier to accept the effect of our loved one's dying if we acknowledge the profound event this is in our life, too."

     These words clarified for me what I have been experiencing without realizing it.  It's not just the loss of Bob, which is hard enough, but also the loss of a huge part of myself--the "me" in relationship to him, sharing life, grand kids, plans, hikes, trips, family news and events, friendships--sharing everything. The person I have been for the past 30+ years has been in partnership with Bob.  As one friend wrote, we were "Bob and Caryl"; that was our couple identity.  But that couple died with Bob. Now I am only Caryl again, solo--no longer a couple, a team, a partnership.  For me, the effect of this is much more profound than my words can convey.  No wonder I feel like I am "at a loss" for a sense of direction at times.  I am lost in a very real way.  I have lost my identity along with losing Bob, and losing my sense of self means I need to re-find, re-discover, maybe even re-create who I am.  

     Somehow it's comforting to recognize this loss.  It helps me understand a bit better that there is more to this grief that comes from losing my life's partner, my best friend. The couple we were has vanished just as surely as Bob himself is gone.  Now even though I am in many ways the same person, I am also no longer that person.  It helps a little to reflect back on our life together, to remember that when we were newly-weds, each of us had to become someone new, then, too.  Just as it took time to let go of being self-contained individuals in order to "marry" our lives, so it will take time to let go of the person who was "Bob's other half" in order to become comfortable as a person "flying solo" again.  In the meantime, I hope that my new awareness of this additional loss will somehow make it easier to ride the waves of grief when they come.  Who knew that at 70 years old one might need to once again answer the question "Who am I?" 

     

Another "First"

     Esperanza, Hope and David will be here for supper tonight.  So I am actually fixing an evening meal for the first time since Bob died.  I just finished putting together a crock-pot lasagna. We'll have that and a salad.  And, hopefully, leftovers for a meal another evening.  It seems strange to think of this as some sort of milestone, but fixing an evening meal isn't much fun any more.  I have gravitated toward frozen dinners more often than not, and when I don't have those on hand, then a quick sandwich or maybe scrambled eggs have been the go-to entree.  And, of course, there's always popcorn!

Tender Loving Care

     A couple of months ago, before Bob died, on any given day I accomplished a great deal.  Much of what I checked off my figurative "to do" list were things I did for Bob, but there were many other things, too--making phone calls, doing laundry, writing notes, paying bills, running errands-- mostly mundane but necessary tasks.  I don't know that I was exactly a "ball of energy," but I certainly seemed to have a lot more then, and motivation as well, than I do now.  Then I was going pretty much nonstop "from sun-up to sun-down," as the saying goes.  Now, by about 1:00 or 2:00 in the afternoon, it is a huge effort to imagine doing much of anything for the rest of the day.  Sometimes I manage to push through this lethargy until time for dinner; but there are times when I just surrender.

     This afternoon, I pushed myself a bit and sorted through an accumulation of papers.  In the stack, I found materials from hospice, including a booklet entitled Journey's End.  On the last two pages, the author comments on "Bereavement."  There I came upon these compassionate and supportive words:

"You have probably pushed yourself to be strong for your loved one, giving little attention to your own needs.  Now is the time to treat yourself tenderly.  You have sustained a deep wound that will need loving support to heal."  

Unbroken Connection

     The medical center where Bob died is on a main street in Taos; I drive by it numerous times a week.  The window of "his" room overlooks the street, as does the patio where we sometimes sat when the grand kids came to visit.  Some days as I drive by, I am only vaguely aware of the countless memories we made there in two-and-a-half weeks.  Last night as I passed, the memories washed over me in waves, vivid and strong.  I could almost feel Bob's presence with me--as real as if he were sitting, as usual, in the passenger seat beside me.  The sensation didn't last long--about as long as it took to pass the building.  That same sense comes over me in the morning when I sit down with my coffee, facing "Bob's chair" where he always sat with me as we began our day.  I know he isn't sitting in that chair, but I feel his presence as intensely as if he were.  I feel it, too, when I sit at "Bob's place" at our dining table, or when I fluff up "Bob's pillow" as I make the bed. The feeling comes again each time I put on, or glance down at, the bracelet made of "Bob's wedding ring."

 

There is unexpected, welcome comfort in these connections--reminders that the bond we shared and the life we lived together were real, and continue unbroken--although in a new and unfamiliar guise.  

A Changing Sense of Self

     This past Sunday, returning to New Mexico from very rich and supportive time with family in Illinois, I was aware that I was not thinking of myself as "coming home" but rather as "coming back."  It doesn't quite feel like home without Bob.  Then tonight, for the second time after his death, I attended the monthly Alzheimer's caregiver's support group; this time, I felt out-of-place--even though several in the group have urged me to come, and assured me I am a "permanent member." Tonight, there were three new members who talked at length of the way the disease is affecting their mothers, and thus, their own lives.  It was very difficult to listen to their stories and I felt myself distancing emotionally from them.  On the way home, I realized that that is consistent with other responses I've made since Bob died.  I had belonged to a caregiver's support group on Facebook, and was getting posts from two or three other Alzheimer's-related Facebook groups, but after he died, I couldn't bear even seeing the posts much less reading them.  And so, I discontinued those connections almost immediately. Tonight I think it's time for me to move on from the local support group, too--although, not from the members with whom I've grown close.  We can certainly find ways to stay in touch. But I am not feeling up to beginning the Alzheimer's journey anew, and I don't want to be a "permanent member" of the group, even though I know the invitation is offered as loving support.  It feels like time for me to move on, and I'm inclined to trying a grief support group I've heard good things about. That feels more apropos for my heart and journey now.

"Hard" is a Relative Term

     So often in the last few months of Bob's life someone commented to me about how hard things must be, and I guess they were.  But they are much harder now.  What made it easier then was that he was here with me; we were sharing each other's struggles and sadness about the effects of Alzheimer's disease on both of us.  And that made a huge difference, still sharing everything.  We also still spent our life together.  Still enjoyed sunsets and moon rises over the mountains, and the walks we took in the park or woods.  We still held hands, still shared our morning coffee, still hugged and kissed every morning and every night.  We could still enjoy time with Esperanza and our grand kids, still laugh together at their antics, and delight in their newfound abilities.  We were still a couple and felt each other's loving presence in so many unspoken ways.  Now, in the absence of sharing, this season is so much harder than all the hard days and nights of his illness.

"First Hike"

     There have already been many "firsts" without Bob's presence, and today was another one.  It was my first time to hike again the trail that became one of our favorites because it was close to town yet on a mountainside.  The last time we hiked that trail, over a year ago, Bob fell twice.  After that, I was afraid to take him on any mountain hikes unless they were on wide (two-track) paths with no chance of falling over the edge.  This morning, Esperanza invited me to join her on it.  It felt good to be there again and brought back many happy memories of hiking it with Bob, and also with her and the grand kids along a couple of times.  It also felt good to exert myself so much again.  It's been a long time since I've been able to challenge myself as much; I had scaled back to whatever worked for Bob.

Looking Back after Two Weeks

     Today is July 12, 2017. Two weeks ago yesterday, I lost my best friend, beloved companion and partner, my husband, my Bob. The last two weeks of his life (June 12-27, 2017) he spent at Taos Retirement Village Medical Center.  He walked in there with me, intending to stay 5 days to give me a respite.  But Alzheimer's disease had other plans and began intensifying its grip, disabling him more each day.  To save money, I briefly considered taking him to a VA-contracted facility in Albuquerque, but am so grateful I decided against that.  I wanted to keep him here, as close to home, to Esperanza and the kids, and to our friends as possible.  I am so grateful I made that decision.
     During those last weeks, he was able to enjoy visits from friends—Donna and Steve, Janice, Rose (who spent the bulk of two different days with him), Kathleen and Genny.  Because he was here, he also had visits with Esperanza and the kids who colored pictures for him and gave him hugs and kisses and told him they loved him.  And because he was in the nursing center, I was able to focus again on being his wife and best friend.  We were able to share quiet evening walks, to attend an opera performance on the Village grounds, to listen to music, and even to dance one more time when a local folk music group performed at the Center.  One evening I played the piano and sang for him. While he was still eating, we shared meals at a “table for two.”  As he drifted off to sleep at night, I could sit and hold his hand, sometimes I would also sing to him. More than once, we had a whole day of just being together, enjoying each other's company while listening to our favorite CD's.  In a very real way, the Nursing Center became “our home” for those two weeks.  We were surrounded by love and care, and we were able just to “be” together.  We were “at home” with each other to the end.

His Love-Filled Life

     Robert James “Bob” Bournique, 81, died Tuesday, June 27 due to Alzheimer's disease, after living a very full life. He was born on November 16, 1935 in Butler, Pennsylvania, the 6th child of Louis and Frances Bournique.  As a young man, he served as a Navy pilot flying off the carrier USS Independence. He survived ejecting from his plane over the Mediterranean Sea in December 1960 when his engine quit and his parachute failed to open.  After six years in the Navy, he completed a degree in Industrial Engineering at the University of Cincinnati. Then, after some years as a commercial pilot selling Piper airplanes,  Bob became an FBI agent serving in Boston, Detroit (where he was part of the team working on the disappearance of Jimmy Hoffa), and Marquette, Michigan.
   
     It was in Marquette that he met and married his wife Caryl.  In their 31 years of marriage, they opened their own home as a homeless shelter for five years, and adopted two children from Colombia, South America.  Bob was a lector, eucharistic minister and 7th grade religion teacher at St. Michael's Church.  In 1986 he completed the diocesan lay ministry training and became a pastoral associate at St. Mary's Church in Big Bay, MI where he was a monthly homilist.  He volunteered at the Marquette Branch Prison and at the St. Vincent de Paul food pantry.  His activism with the Marquette peace community eventually led to his resigning from the FBI for reasons of conscience.  His final career path was as a licensed practical nurse for ten years, the occupation that he enjoyed most.

     Bob was a lover of the outdoors.  He hiked, biked, skied, snowshoed, camped, canoed and fished.  He shared all these passions with his wife and family. Bob was also an excellent cook, famous among family and friends for his home-made pasta and pizza.  His greatest passion, though, was loving and serving others.  Numerous people were blessed by his generosity.  His quiet personality was rooted in a deeply reflective and spiritual outlook that made him quick to respond to others' needs.  His spiritual path included daily meditation both at home and at the Lake Superior Zendo.  He often remarked that his prayer was "to become a better lover."  Those who knew him described Bob as gentle, reflective, dedicated, sweet, and kind.  At his last residence, Taos Retirement Village Medical Center, he was known for his bright smile.

     Bob's greatest joy was his marriage to Caryl and their life together, especially becoming parents and then grandparents.  He delighted in time spent with family and always made that his priority.  It was in order to be part of the lives of their grandchildren that he and Caryl moved from Marquette, MI to Taos, NM in April 2011, shortly after receiving the diagnosis of Alzheimer's disease.

     Bob was preceded in death by his parents, two older sisters (Mary Lou Campbell and Virginia Thompson), a younger sister (Frances Gay), and both his brothers (Louis and Jacque).  He is survived by his wife Caryl of El Prado, NM;  son Fabio of Marquette, MI; daughter Esperanza of El Prado and three grandchildren—Frankie, Hope and David--each of whom brought joy to his heart and smiles to his face.  He is also survived by three sisters: Ann Bykowski of Red Hill, Pennsylvania; Barbara Richards of Lake Wales, Florida; and Bette Bournique of Costa Mesa, California, as well as by 14 in-laws who consider him a brother; numerous nieces, nephews,great nieces, great nephews; and countless friends.

     Celebrations of Bob's life will be arranged in the coming weeks.

A Collage for Bob's 70th

I made this to celebrate Bob's 70th birthday. Left to right, top to bottom:  Teaching our kids to ride bikes; a hike with niece Mia; dancing with Esperanza at his brother Lou's wedding anniversary; high school photo; with his brothers, Lou and Jacque; "just married"; family reunion with sibs; little guy on a pony; with Esperanza in Marquette; his motto: "It keeps getting better"; at Lake Superior beach with Esperanza, nephew Charlie (buried) and niece Mia; about 12 years old; in Miami airport returning from Colombia with our children; holding baby Tim, our nephew; snow cake for his 70th birthday; cross country skiing at Pymatuning State Park in Pennsylvania; handsome groom; with his first bicycle; about 9 years old; with niece Mary Lee.

Shocked and Disbelieving

     Today, at about 2:50 pm, surrounded by family and friends, Bob died in my arms.  Tonight I walk about the house knowing it's true but disbelieving.  Memories rush over me.  I almost hear the slap of his slipper on the tile floor.  I see him bent over, tugging on his shoes.  His smiling eyes gaze at me across the table.  How I wish it were still true.

Little Ones bringing Love

Love, Light our Way

     Late last week, Bob developed two infections.  Over the weekend, he struggled mightily and has responded somewhat to a course of antibiotics.  But the respiratory infection (and/or possibly lung cancer) is still causing him a great deal of discomfort, especially from hard, tortuous coughing.  He has eaten very little the past several days, and can barely take the smallest sips of water. He rallied a little bit today, and was mostly awake during the several hours of our grandson Frankie's visit.  He even managed to get up in the wheelchair for a couple of hours, to cruise around the facility for about 20 minutes, and to eat half a bowl of chocolate ice cream.  But then he wound down and slept fitfully the rest of the afternoon. Pain medication finally helped relax him around 6:00 p.m. The time is upon us to make him as comfortable as possible and to celebrate in his hearing all the love and joy he has brought into our lives as well as the love with which we surround him.

Questions with No Answers

     How did this happen?  How could it be that Bob walked into the nursing center with me last Monday, and now needs the assistance of 2-3 people to get in and out of bed or the wheelchair, or to use the bathroom?  His hospice nurse said to me a few days ago that she was so sorry, that had she realized this would happen she never would have recommended I take advantage of the 5-day respite. I could only tell her what I keep telling myself:  We can't second-guess ourselves.  All of this could have been on the verge of happening and may have occurred when he and I were home alone.  And I believe that.  Still, I can't help wondering did this hasten his losses (which are inevitable in this disease) or did his placement on Monday save us from having some sort of "catastrophe" happen at home?  We can't know the answer, and in a way, it doesn't really seem to matter now.  What does matter now is that he needs me more today than at any time in our almost-31-years of marriage, and that the loving bond we have is strong enough to hold us both through whatever lies ahead.

A Glimmer of Light

     This morning I was given a glimmer of light in the bleakness of this past week.  It's something to hope and pray for, and will be close to a miracle if it occurs.  I was speaking with Jenny, the administrator of the Retirement Village where Bob is.  I had called her to see what I need to do to make the transition from his being in respite (which ended at 11 am this morning) under the auspices of hospice and Medicare, into an ongoing and indefinite stay under "private pay."  My thought was that perhaps a few more weeks, or a month, would give me time to sort out my options more carefully without feeling like I was under so much pressure.

     Jenny told me that last night, until 12:30 p.m., she and Kip (director of nursing) and Sarah (business manager) had met together about how they might approach the VA for either a one-time contract to take care of Bob, or becoming a VA contracted facility for northern New Mexico (currently there are none in northern NM).  I was pleasantly and humbly amazed and flabbergasted that these three people whom we hardly know have cared so much about us that they would give up an entire evening, literally working late into the night to try to help us be able to stay here in Taos.

     Of course, they still have a lot of "leg work" to do, beginning Monday (although a staff member was already dispatched to the local VA clinic this past week with the mission of obtaining the proper contact information for this group to initiate their plan.)  And, of course, the VA may not end up collaborating in this attempt.  But the fact that these three are even working on this means more to me than I can say. There are good people.  There is compassion.  There are angels.  May their kind and dedicated hearts be rewarded with success, on our behalf, and on behalf of all the vets in this area. 

Dilemmas and Decisions

     Tonight I feel a strange peacefulness.  It's strange because my mind and heart are filled with "dilemmas and decisions-to-be-made."  Perhaps the peacefulness is because of the day Bob had today.  He was given no sedatives at all since last night, and he had a pretty good day overall.  He ate all 3 of his meals in the dining room instead of in his room--breakfast with the help of a CNA, lunch with the help of our friend Janice, and dinner with my help.  He enjoyed several wheelchair excursions around the facility, including several trips to the patio areas.  We listened to music and "chair danced" (which made us both smile) and after dinner, I took my sheet music books to the sun room  and played the piano and sang to him--eliciting his applause each time.  Once he was in bed, he seemed to grow restless so I'm not sure how his night will go.  I hope it will be restful since the staff tells me he was up A LOT last night!

     Yesterday's trip to Albuquerque was....hard, I guess.  It was made easier because Donna was my chauffeur, companion, and loving friend, but overall it was hard.  It was hard physically because it was a long day--getting up at 6:00, leaving at 8:00, touring the one and only facility contracted by the VA which actually had both a memory care unit and a bed available (this was out of at least 10 facilities in Albuquerque).  I came home thinking I had no choice but to put Bob there--because of his needs, and because of our financial situation.  This would lead to a whole complicated series of dilemmas and decisions--having to pay rent and utilities here in Taos while I move--temporarily-- to Albuquerque (about 3 hours south), finding a furnished place in Albuquerque for me, figuring out what I need to take with me to Albuquerque for both of us, accepting the fact that I'll be living in a place where I know no one and have no support system at all, having to forward mail (and as yet, having no address to send it to), and on and on.

     Then today happened.  Bob was, as I wrote above, more like himself--mellow, smiling, mostly easy-going, and all without the aid of any medication.  I asked the day-shift nurse if he continued this way, would they be able to manage him at this Taos facility.  She didn't hesitate to say yes.  As Bob and I shared dinner in our usual comfortable silence, I began to think it might be worth it to me and to him to try to stay here in Taos, even though it would cost me dearly financially.  Here is "home" now--where we have friends and support.  I would have to pay out-of-pocket at this facility because the VA has not contracted with them, but perhaps it would be worth it for both of us.  He would not have to go through another transition period in a new facility.  We would not have to weather all of what lies ahead totally alone in a big and unfamiliar city, 3 hours from our closest friends and support system.

     I don't know what to do.  Logically, it seems ridiculous not to accept the placement in Albuquerque since Medicare would cover the hospice portion and the VA would cover the rest.  But my heart is tugging in a different direction, even if it means out-of-pocket payments of $6,000 a month--which we could manage, but only for a very short time, and not without jeopardizing my financial security for the future.  Our friend Steve mentioned the other day that clarity sometimes comes in sleep, and I have experienced that, too.  So I think I will sleep on this, maybe for the next couple of nights, until I can ask some more questions come Monday.  And I will welcome insight from family or friends who read this that may help bring my dilemmas closer to clear choices and decisions. In the meantime, I am grateful for the "strange peace" I feel tonight, and for the gentle, happy day Bob and I spent.  May he and I have a restful night, strengthening us for the day ahead. 

Heartbreaking days

     So the respite week that was supposed to be has turned into my worst nightmare for Bob.  He has not handled this time well at all.  Rather, this disease has overcome him during this time.  I can't even begin to put words on all the heartbreaking things he/we have endured.  He is not coping well, and I have spent this time trying to resolve:  What will I do for him now?  I don't feel I can bring him home and care for him safely (for both of us) at this time.  So tomorrow our next door neighbor friend, Donna, and I are going to Albuquerque to explore some possible memory care placements that would be funded by Medicare and the VA (whatever Medicare doesn't cover.)  If we find something for him, I will be looking for at least a temporary (maybe month-to-month) apartment there for myself so that I can be with him every day.  My heart is breaking; the only reason my spirit isn't crushed is because I know how much he needs me to do this for him.  I am grateful for the wonderful support of our NM friends--Steve who ran an emergency run to get meds to Bob and brought me kleenex tonight while I wept and hugged me tight before I left; Donna who came to keep me company as I made myself eat lunch today, who will go with me tomorrow to Albuquerque even as she copes with her own misery from allergy season, and who has listened to me countless hours as I sort through feelings and fears and whatever else this brutal disease demands; and Janice who also listens with her heart and who will go to have lunch with Bob tomorrow in my place.  I am weary of the worry, and overwhelmed with the changes in Bob and the decisions this has suddenly thrust upon me.  I don't know what to wish for or pray for except peace, especially for my beloved Bob who is so tortured right now.  My heart grieves and rages and longs for release for him.  

Decor with a Message

Last evening I came home from the support group I attend each month and found this arrangement on the kitchen windowsill.  My first reaction was a chuckle and the thought that once again Bob had been rearranging things around the house--something he is doing a lot of lately.   Usually, his placement of things puzzles me or even annoys me.  But this time, it first amused me, then it amazed me.  The reason for my amazement was that it eventually dawned on me that in the Buddhist meditation classes Bob and I have attended, there is an expression "monkey mind" which refers to the mind's tendency to run on out of control, especially when one is trying to empty the mind and focus solely on the breath, or on loving-kindness, for example.  This made me wonder whether something deep inside Bob's brain saw that same connection as a reason for placing this mini-gorilla next to the laughing Buddha.   I'll never know for sure, but I've left these two together as a reminder not to let "monkey mind" rule the day.

Still the Love

     The hospice staff  have begun encouraging me to take advantage of a 5-day respite they offer.  It would mean Bob spends  those five days in a small nursing center in Taos, part of the Taos Retirement Village facility.  When this first came up, I couldn't picture myself doing it.  Mainly, I couldn't imagine leaving Bob there, even just for 5 days.  And I worried about how he would feel about going.  But I'm also trying to trust the objective observation of the hospice workers who, like my family and friends, remind me that taking care of myself is essential to taking good care of Bob, too, as well as being necessary for my own long-term health.  These are things I know in my head, but my heart sometimes gets in the way of seeing clearly.
     So, I have been approaching this in stages.  First, I went to see the facility where Bob would stay.  I met some of the staff, talked at length with a nurse, and came away feeling a little better about his being there--especially since it would only be for five days.  The center is right in town, on a main street, with lovely grounds and the chance to get out--both on the grounds, and in one of their two garden/patio areas.  Walks into town are also possible, with a staff member or with me.  Hospice team members who already know Bob would also be checking on him and the CNA who does his showers at home would go there to do them as well.  The facility is small; there were only 12 residents the day I visited.  That would probably make things easier on Bob, too.
     Since my visit, I have been mulling over how to approach doing this.  I wanted to be sure Bob understood it was temporary.  I didn't want him to feel hurt, abandoned, or fearful.  I hoped he wouldn't be resistant.  Tonight I decided I would test the waters.  So I told him that the hospice staff think it would be good for me to have a break.  Before I could say anything else, he was nodding his head and smiling.  I asked if he thought so, too, and again he nodded.  So then I told him about their proposal.  I got out the calendar to help him visualize "five days."  I told him I would still be seeing him every day, just not being the one responsible for his care.  I mentioned how good it would be for me to be able to sleep through the night  at home knowing the "night shift" would be there for him when he needed to get up.  All the time, he was nodding in agreement and looking at me totally peacefully.  I told him this was something he can do for me, and he agreed with that, too. 
      All of our married life Bob has always been willing to do whatever makes me happy, so his generous and selfless response was not really a surprise.  Rather, I felt a deeply touching and welcome realization that he is still capable of paying attention to me and my needs, that he has not lost the capacity to care about how I am. Now it doesn't feel like I'm foisting this on him. Instead, it feels like this is Bob's gift of love to me: his support and encouragement, as well as his willingness to make this short adjustment in his own routine for my well-being. I always knew I had married a wonderful, loving, big-hearted guy; tonight I felt all that anew and my heart is quietly, joyfully celebrating. 

New Vocabulary, New Experiences

     Delirium.  Haldol.  Visuospatial deficits.  Wheelchair. Handicap placard.  Frequent falls.  5-day's respite care.  These words and phrases are all becoming part of our life now.  Once again, many changes are occurring in our day-to-day life together because of the progression of disease.  Thanks to the ready-and-willing hearts and hands of our next-door friends, we have righted all the falls so far and kept Bob safe when I had to depart early in the morning and he couldn't bring himself to get dressed in time to go along.  Because of the expertise and caring of the hospice team, I have come to understand the delirium (sudden mood change) and to summon the calm I need to make a more helpful response in the moment.  Thanks to medicine, and a few adjustments over the past two weeks, Bob is much more peaceful and content again right now.  With the sturdy shoulder and gentle ways of the hospice counselor, I have been helped to imagine taking advantage of a hospice-covered 5-days of respite care at a facility in town, and will have a tour tomorrow to help my heart "picture" Bob there for that brief time.  Still to come is the handicap placard for which we applied today, and the wheelchair the hospice nurse suggests we get to make our outings a little less stressful.  (The physical therapist ruled out a walker several months ago, saying it would be hard for Bob to learn how to use it now and therefore, could actually become more of a hazard to him than a help.)  As for those "visuospatial deficits," those are problems related to not always being able to judge with his eyes where an object or his own body is in space.  And so he has some "near misses" approaching a chair, can't always find his mouth to brush his teeth or eat, can't quite get his foot into his shoe, and other befuddling (sometimes nerve-wracking) experiences.

      Amid all these new terms and experiences, there are still moments punctuated with more familiar ones--smiles, laughter, hugs, singing, and even dancing. Words have mostly escaped Bob, but not love. Nor has he lost enjoyment of the rabbit or cat or bright oriole passing through our yard. He rarely fails to point out the vivid colors of sunset over the mountains, an unusual cloud formation, or the moon rising into the night sky.  He may scowl in frustration when eating becomes a chore, but he still melts my heart with his sweet smile as he snuggles into bed and we say goodnight.  These are the moments that keep us connecting, and keep me going, even as the "going" gets tougher.

You Never Know

     Last weekend Bob and I managed to do a bit of shopping at Walmart.  He "drove" the shopping cart (meaning he had his hands on the handle bar) and I steered him through the store by holding onto the front corner of the cart.  Off and on, we came upon three women shopping together who looked like they were probably sisters.  One was wearing a T-shirt from Oklahoma State.  As Bob and I exited hand-in-hand into the parking lot, I felt a hand on my shoulder and heard a woman say, "Your love inspires me."  I turned to see one of those three sisters smiling at me.  What a sweet and encouraging gesture she offered.

     This past week, I posted in our "neighborhood watch" group some pictures of Bob, a note about my growing concern that he might sometime wander and seem lost, and information about how to get him back home as well as how to reach me.  Two days later I had this email from a neighbor I do not know but who is an under sheriff in Taos county:  

 "I am writing to let you know that Sheriff Hogrefe has disseminated your, “Heads Up” to the entire Sheriff’s Office and I want to assure you, on behalf of Sheriff Hogrefe and the entire Taos County Sheriff’s Office, that we will be vigilant and rest assured that if we encounter your husband, we will return him home safely. If you ever are in need of assistance, please feel free to contact us at any time."

     Another response to my post was a voicemail message from a neighbor letting me know that he has "walked the path (I am) now on," and letting me know I could call to talk any time.  These simple gestures from 3 different strangers really touched me.  It's comforting and reassuring to know that there are still many people "out there" whose hearts are kind and inclined to helping others.

     We experienced that same kindness and generosity the week before when finishing up at a restaurant just outside of Santa Fe.  Bob needed to use the restroom (which has become an anxiety-producing event for me when we are out since he needs a lot of help doing that now.)  I told him I would take him into the women's room, but was uncomfortable going into the men's room since I didn't know whether anyone was already in there.  Bob was not willing to go to the women's room, so reluctantly, I watched him enter the men's room alone.  I stood waiting nearby, at the end of the completely unoccupied bar. Soon it occurred to me to ask the also unoccupied bartender whether he might check the men's room for me, and explained that I would like to go in and help Bob and why.  Without hesitation he said, with a bit of a Spanish accent, "I go check.  And then I wait outside and keep anyone out."  Relieved, I went in, helped Bob, and returned with him to the dining area.  Sure enough, a rather puzzled-looking gentleman was standing at the end of the bar watching us exit, while the helpful bartender was standing just beyond him offering us a kind smile and gentle wave. It was truly heart-warming to be the recipients of such simple willingness to help.

     This last incident of needing a restroom that Bob and I could use together, on top of numerous other similar situations when we are out and about, has drawn my attention to the need for "family restrooms" in every public place.  These are certainly few and far between here in Taos, and I suspect that would be true all over.  It has also prompted me to make a sign which I carry in my purse to put on a women's restroom door.  It reads:  "My husband has Alzheimer's and needs assistance using the restroom.  We are both inside at this time.  If this makes you uncomfortable, please wait outside. Thank you."  I haven't used it yet, but at least I am prepared.

     

Caution--Rougher Roads Ahead

     I learned something today.  I learned that if company wants our house to be clean when they come, they'd better plan to help clean it--ha, ha!!  Seriously, though, trying to do just a minimum of cleaning this afternoon was a much bigger chore than ever before.  The reason was that Bob wanted desperately to help, but he couldn't seem to figure out how.  Even after I demonstrated something several times (e.g. pulling the fitted sheet corner over the mattress), he didn't even come close to doing what I'd demonstrated.  I asked him if he wanted to dust the kitchen window sills and he said "yes" so I left him with the dust rag and proceeded to vacuum the rug.  Each time I looked in on him, he was rearranging the dish drainer on the counter, running water in the sink, and cleaning out the (already clean) drain stopper.  He never did dust the window sills.  He took a wastebasket from the bedroom to empty into the larger trash can in the kitchen.  When I walked in on him, instead of emptying that basket, he was trying to put into the larger trash container the kitchen footstool, the dust pan, and hand broom--all of which were sitting near the trash container and so distracted him from what he had thought he would do.  He went outside to shake out the dust rag and instead began wiping down the screen door with the same rag.  At one point, he was cleaning off the dust build-up on the vacuum attachment and I thought  that was great--until I noticed he was flicking the pieces of dust onto the already vacuumed rug!  All the Alzheimer's literature says to let the person help you, but sometimes (like today) it seems like not only does Bob's helping make more work for me, but it also makes it harder for him because he knows he's not getting it right.  What a challenging disease this is, and it seems we have only just begun to know the depth and breadth of those challenges.  I'm hanging on tight, expecting this to be a rough ride.

Getting Harder

     It's been a hard week, beginning with last weekend when Bob was agitated with the volunteer on Saturday and then with me on Sunday.  His agitation has occurred again several more times this week.  There was a whole day of it Tuesday, and it's been going on much of today as well.  Twice this week (once today) he took off out the door in frustration? anger? I don't really know what he was feeling, but he expressed it in annoyance with me, though I couldn't begin to say why.  His leaving like this (that's 3 times this week) scares me.  What if I'm not around and aware one time when he takes off?  What if I can't talk him into coming back some time?  It also worries me because it makes me wonder if I'm going to be able to keep him here at home, after all.  I want that with all my heart, but these new manifestations of Alzheimer's are making me seriously question whether it will be possible as the disease progresses.  I'm feeling very sad.

What Now, Alzheimer's?

     Something new is happening,  and unfortunately, with Alzheimer's disease "new" is not good.  Yesterday while I was out, Bob spent a few hours with Jack, a hospice volunteer.  They enjoyed some opera music, a cup of tea, watched a National Geographic DVD.  Then, out of the blue, Bob became very upset and agitated and would have nothing more to do with Jack.  At one point, Bob even took off but, fortunately, didn't go beyond the carport.  Still, this gesture worried Jack who was rightly feeling responsible for Bob's safety and well-being.  So Jack called me and I came back home as quickly as possible.
      Bob was pretty uptight when I got there and it took another half-hour or so after Jack left for him to relax and be able to move on.  We had a glass of wine together and then ate dinner, but I could sense that he was still not quite relaxed even by the time he went to bed.  He even tried to signal me with hand gestures that he was feeling a bit "off."
      Then this morning when I was trying to help him dress, as I always do now, he became agitated again, asking me several times "why are you doing this?"  I kept trying to distract him (as all the literature suggests), but his agitation lasted for a good hour.  Then all of a sudden he changed again and was ready to get dressed.  Throughout the day, however, he was very restless.  Whenever I was unavailable to do something with him, he was pacing the house and sighing heavily.  We were able to get out for a few hours, ran a couple of errands, walked in the park, and then came home and did a bit of yard work.  He seemed mostly to enjoy all of that activity, but once we were back home and I got busy with balancing the check book and fixing dinner, he resumed his restless pacing.  I tried to help by putting on a PBS Great Performances concert, but he seemed unable to focus on that. He tried taking a nap but that didn't happen, either.
      I know that Alzheimer's eventually begins to affect the emotional center in the brain.  It causes people to lose emotional control.  Some people become agitated and angry.  Some laugh without obvious reason.  Some cry.  I can't help wondering if these episodes this weekend are signs that the disease process is deepening.  It is a little scary to watch this play out in Bob, but even more, it is sad.  I felt such compassion for him when I returned home yesterday because he was so troubled and couldn't begin to express why.  How very frightening and lonely to feel something so intensely but not understand why nor be able to talk about it.

"If Alzheimer's Could Speak..."

This was posted on Facebook one day last week and really touched me.  I admire the empathy of the author who was so able to "get inside" the mind and heart of her loved one.  I am sure, if he could, Bob would tell me this is exactly how he feels:

If Alzheimer's Could Speak...

by Tara Reed

Talk to me...

I can hear your words

and they still touch my soul.

Smile at me...

My eyes can see you and feel your heart

even if I don't remember how to smile back.

Hold my hand...

I can feel your energy when our hands connect.

It makes me feel safe and less alone.

Love me...

 My heart can feel your love even if

my words can't express mine.

Live your life...

Help me on my path but don't press pause

on your life.  Be the vibrant person I know and love.

Trust the process...

I know this is hard and not what we planned

but trust the process.  We can't control it but 

we can choose our focus.  Remember the good

times, know that I am ok and that

you are in my heart always.

Reflection on our Walk

We walk in silence.
Both of us know
you are leaving.

Neither of us can change it.

You have no choice, no say in the matter.
I don't beg you to stay.
That would only make it
harder for you.
You have no choice.

Even though you don't want to leave,
you will keep on going,
keep leaving--me, all of us,
and everything you've ever known,
done, been able to do, loved.

You will keep on leaving
little by little.

And all I can do is
hold your hand,
wait and watch
until you're gone.

You know this.
I know this.

We walk on in silence
holding the knowledge in our hearts
where we don't need words.
We already understand.
Our hands hold on
for our dear life.

                                --May 25, 2016

Good Friday Grief

     This morning, after watching Bob struggle to figure out where his fork was (sitting next to his plate), I offered it to him.  Then I watched as he tried to figure out what to do with it.  So I put some pancake on the fork and held it out for him to take.  He took it, but then struggled with what to do next.  Ultimately, for the first time, I ended up feeding him.  This was followed by his not being able to drink his orange juice.  I put it in a cup with a handle, thinking that might help.  He didn't know how to pick it up.  Twice I helped him put it to his mouth and he managed to drink some, but it was difficult so we have put it away for later.  Maybe this is a passing dilemma, as many Alzheimer's losses are--they come and they go for a while.  Or, maybe it is the beginning of a new place along the way.  We will just have to wait and see.  For now, my heart is even sadder for him.

Words to Cherish

     Last week during her school's spring break, Hope and her brothers were both here the bulk of Monday and Tuesday.  At one point during one of those days, I was outside when Hope came running out the front door and exclaimed, "Grandma, Grandma!  Grandpa just said his second word."  I couldn't imagine what she meant by "second word" and so I asked her to repeat what she had just said, thinking she might not have said exactly what she'd meant.  She repeated it word-for-word.  Of course, then I asked her what Grandpa had said.  She was obviously deeply pleased to report to me that Grandpa had said, "I love you, Hope."  What a treasure he had just given her!  What a sweet memory she had just given me!

Witnesses to our Story

     Susan Sarandon's character says, in the movie Shall We Dance?:    

“We need a witness to our lives. There’s a billion people on the planet…I mean, what does any one life really mean? But in a marriage, you’re promising to care about everything. The good things, the bad things, the terrible things, the mundane things…all of it, all of the time, every day. You’re saying, ‘Your life will not go unnoticed because I will notice it. Your life will not go unwitnessed because I will be your witness.’”

As the abundance of family has been arriving and departing here these past weeks, I have begun to realize that "witnessing" is also part of the gift they are giving me and Bob--witnessing our lives and reminding us of the worth of them, especially of ours together.  Who else but family would drive for two whole days just to be here with us and wash dishes, do odd-jobs, run for groceries?  Who else but family could recount the hilarious and not-so-funny stories of our past, and stir up the poignant feelings that go with those memories?  Who else but family would take whole days, weeks, and even months out of their own lives and give them to us--to support and encourage us, to rejuvenate our spirits and remind us of where we've been and what our story means to others? 

Tonight I am feeling so blessed by the love of our families, by their willingness not only to support us but also to witness for us and with us "the good things, the bad things, the terrible things, the mundane things..."  Their witness has been invaluable to me, filling in the gaps that have begun to grow in my own ability to witness and "care about everything."  The stories they've recalled, the moments they've observed, the concerns they've reflected have moved me deeply and reminded me who I am, as well as who Bob and I are--and have been--together.  

More Sweet Moments

     All three grand kids were at our house today--spring break.  At one point, I was out in front of the house doing something in the yard when Hope came rushing out.  "Grandma," she said excitedly, "Grandpa just said his second word."  Not sure I'd heard correctly, I asked her to repeat.  She said it again, exactly as I'd thought I'd heard.  So I asked what Grandpa had said.  With a big smile, she responded, "I love you, Hope."  Oh, my heart.  Such a beautiful gift to her and she was obviously delighted.

     Then later as we were picnicking at a popular Taos outdoor play space, Frankie--who was seated on the ground near Bob--looked up at him and asked, "You doing okay, Grandpa?"  It makes me so happy that the kids love and care about Bob so much; I know it means the world to him as well.

Of Greetings and Goodbyes

     This Thursday, Bob's sister Barby will be returning home to Florida having spent exactly one month here.  Her help and cheerful presence have been more valuable than I could ever fully describe.  She instigated a major rearranging in our kitchen cabinets which, other than causing both of us to be disoriented a bit for the past few days, has also made our kitchen much more efficient.  She also helped with other big "projects" that I had been postponing, the biggest being cleaning our oven.  She took on lots of daily tasks which have made it easier for me to focus on Bob, and to get some brief time out on my own.  Besides all these really helpful tasks, her loving presence has made everything easier and lighter for me.  I have literally felt myself relaxing more just because she's here, and I have been grateful to have her here to generate memories for Bob, to help me sort out decisions we have faced or may face soon, as well as to share "sisterly" conversation on topics both light and serious.

     In the last hour, I said goodbye to my brother Kevin who came down from Denver for the weekend.  He, too, was a source of great help and loving support.  I had a "to do" list for him when he arrived and he only needed to hear about it once and managed to get everything done, including "teaching" me the fine points of washing our car at a nearby car wash--something Bob has always done and which I've been reluctant to do because I hesitate to hold up a line of cars behind me while I muddle my own way through the directions!   Yesterday, we all piled into our van and took a fun driving tour of the Enchanted Circle, a scenic byway in northern NM.  Kevin and Barby bought our lunch and dessert in Angel Fire, then we stopped by the Vietnam Vets Memorial, and took pictures of New Mexico's highest mountain--Wheeler Peak.  From there we traveled alongside the ice-covered Eagle Nest Lake, took time to play in a park in Red River, walked a bit at Eagle Rock Lake in Questa, and finished our tour at the fish hatchery where we fed the trout.  A good time was had by all.  

     As Barby leaves, she knows more help is arriving.  My siblings have begun setting up times to come, and the first one will arrive next Sunday from Macomb, IL.  Ginny and her husband Bill will be here until the 16th of March, and then my brother Pat, and perhaps my sister Mary, will be showing up at our door on the 17th until the 22nd, coming from Peoria.  My sister Lee Anne and her husband are hoping to come from their new home in Florida in early April.  Meanwhile, friends in Michigan and Montana are looking to fill in the time-slots not covered by family.  I am overwhelmed with gratitude for all the love and support that's being lavished on us right now.  I guess my initial blog entries were heard as a cry for help; it wasn't my intention, but I'm glad it was "read between the lines."  I am also really glad to be part of not one, but TWO, large and loving families, and to have such wonderful friends who are so much like family that they, too, want to be with us in this journey.

     We will also be getting help from hospice beginning this week.  Bob was discharged on Friday from home health and I expect to hear Monday or Tuesday from the hospice coordinator to get that set up.  I am feeling very thankful for the many resources and loving hearts in our lives.

     

Sweet Moments

     I wish I'd had the camera ready earlier this week when 3-year-old David was down on his knees trying with all his might to help Grandpa put on his shoes and socks.  The little guy was not deterred, even when we stepped in to assist.  He stayed right there, putting his little head behind Grandpa's leg to see if the shoe was going on, or trying to help tug up a sock.

     A week or so ago, as 7-year-old Frankie passed our bedroom, he noticed Grandpa trying to put on his slippers.  I could hear Frankie trying to coach Bob to "just push your foot in" several times.  Then, at last, Frankie came to find me in the kitchen and asked me to go help Bob get his other slipper on because he just "wasn't getting it."

     Tonight, when 5-year-old Hope wanted to give Grandpa a hug goodbye, she seemed to realize that he wasn't understanding her intention since he kept wiping off the kitchen counter. She gently took the dish towel and glass from his hands, and then held out her arms so he would sweep her up into his--as he always does.

     These sweet gestures from our grand children are moments we treasure.

One More Step

     Today we began talking about Barby's departure.  She will have been here a full month by the time she heads home next week.  Her presence has been so much support on many levels--more than just helping with household tasks, she has been an encouraging and uplifting presence for both Bob and me.  She has been a great listening ear and sounding board, a strong support in facing hard choices.  I can't begin to express all that her being here has meant, nor ever thank her enough for making this "love journey," as one of her friends called it.
     As Barby leaves, we will most likely be entering another phase of this journey.  This past Tuesday, Bob's doctor referred him for hospice evaluation.  A nurse came today to begin that process and she feels he is eligible.  She still needs to meet with her supervisor and do some more paper work with us, so tonight the decision about eligibility is still pending.  
     "Hospice" is a heavy word, in a way.  It connotes ending, and sadness, dying and grief.  In many cases, it is clear that those connotations are imminent.   But for someone with Alzheimer's, that time is not as easy to predict.  Yes, it is a terminal illness with no cure.   Yes, there are "stages" one passes through more or less predictably.  But each person with Alzheimer's ultimately "writes their own story," as the neurologist in Marquette told us about 6 years ago.  And so, for example, there is a man in our support group whose wife has--as he sweetly puts it--"graduated from hospice 3 times."  She is now in hospice for the 4th time.
     So though we know Bob's journey is coming to an end, as all of our journeys must, we don't really have the more or less certain prognosis that might be available were he fighting cancer, for example. What we have is our lived experience that everything is getting harder at an increasingly rapid rate. And, of course, we have the expert observations of his doctor and the nurse evaluator.  And so we have taken this next step.  We take it, more or less as we all make any choices in life, trusting that we are doing the best we can.  In this case, we trust that we are doing what is best for Bob--preserving his ability to be at home with all of us, his family, who know his history and person better than he does now, and who love him with all our hearts.  We hope that this decision will also mean Bob can continue to enjoy family life and the antics of our grand children--even if only "from the sidelines" and as a spectator.   And so, at least for me, choosing "hospice" is reaching out to as many loving hearts and arms as we can to support us as we make our way through the ever-intensifying demands of living with Alzheimer's disease.  For now, thankfully, that is what we are doing:  living with Alzheimer's disease.

Revelation

    Bob's sister has been here since February 10.  Her presence, support, and help has been such a blessing to me.  The other day I was reflecting on all that she does--laundry, dishes, cleaning, meal planning and cooking, some kid-sitting--and I realized that up until her arrival I have been doing all of those things PLUS all that I am still doing for Bob and to manage our household and continued grand-kid-sitting.  I found myself wondering, "how in the world have I been doing all this?"  

    There is an encyclopedic-type book about Alzheimer's disease which is often referenced in care-giving circles, entitled The 36-Hour Day.  Since Barby has been here, I think mine has dropped back to a 24-hour day.  I have also found the space in my day (and in my mind) to start exploring options for more support, and a way to achieve that goal is beginning to unfold.

Helpful Insights

From an email to friends earlier this month:

      In the midst of all this, I've been trying to "deal with" myself and my feelings, and I have not been very happy with who I see.  I think I have begun to realize, though, that my impatience, frustration and anger are really masks for my grief and sorrow which are so much harder to face.  I've been re-reading a book I read a couple of years ago (Ten Thousand Joys and Ten Thousand Sorrows) by the spouse and caregiver of an Alzheimer's patient.  Early in that book, she writes:  "I felt a surge of impatience, then realized that the problem wasn't a need to hurry but my own grief at his growing disability.  Impatience was easier to deal with than feeling the depth of my grief."   The other night I came across this paragraph about half-way through the book:  "Amazingly, the truth was that even with all the signs--this relentless process of deterioration--some part of me still clung to the sense that under the confusion he was still well, that somehow he might even bounce back.  My mind automatically bargained: maybe this was just a temporary state of affairs.  He seemed so healthy in every other way.  How challenging to accept that this process was final, headed inexorably toward loss of mind, loss of communication, eventually death.  Much to ponder.  Much to open to.  Much to accept."  This paragraph really struck me because I had been pondering for a few weeks now whether I have yet arrived at a place of acceptance or was still (after 5+ years!) somehow meandering around in a place of denial.  That's why her words really reached me; it seemed that if she could have been in so much denial that it was possibly where I have been, too.  And then we got hit this week by Alzheimer's jumping out at us from every corner and in every minute of every day; it made it hard to deny though still very unwelcome!

     My hope is that now that I've recognized the ongoing denial I've been living in about Bob, perhaps acceptance will have a gentling effect and help strengthen the patience I long for, and lessen the frustration and anger.  As the writer of the book referenced above said, "this is the final chapter of your relationship."  I want that chapter to be for us as she describes is possible when she writes: "'Your loving doesn't know its majesty until it knows its helplessness,' Rumi wrote.  Some people may think that is a depressing statement, but upon reflection it becomes arresting and inspiring.  It acknowledges the fact--especially true in old age--that we become increasingly helpless. Fighting that reality causes suffering; acceptance of it frees us.  Although seemingly paradoxical, when we accept that we are helpless to change the realities of living with dementia--or loss of any kind--we may gradually discover the deepest sources of our loving.  For love enables us to handle the greatest challenges that life presents." 

The Changes Keep Coming

From emails written earlier:


Monday, Jan. 30, 2017

I've been looking for time to put all this into words, and then when I had the time, I couldn't muster the energy.  But tonight I may have both, and I feel the need to share.

It's been a hard week for Bob and me.  He seems to have lost a lot of ground this week.  Last Sunday (the 22nd), he took a nap in the afternoon and when he woke at 4:30 he was quite troubled and confused.  At some point, it came out that he did not know who I was and when I told him, that seemed to bother him even more.  He kept saying "that can't be," even after I showed him our matching wedding rings.  This went on for at least 90 minutes.  Hope was here and kept bopping in and out of our conversation, which seemed to help.  Several times, Bob laughed at her 5-year-old antics; I think that actually helped lift the fog for him.  Another thing that seemed to help was that the last time he looked at me saying,"that can't be" I asked him if we could just be friends, best friends even.  He seemed to like that more than that I am his wife, so I let that stand.  A couple of nights later over dinner he asked me "where did you come from?"  I wasn't sure if this was going in the same direction as Sunday, but suspected it might.  So my initial response was "from Illinois, like you came from Pennsylvania."  Then I added that we came here together to be with our grand kids.  That was met with a look of surprise and puzzlement, so I asked if he knew who I was.  He wasn't sure, and when I told him, he threw up his hands and began to cry, saying, "I'm sorry."  I told him it was okay, that it didn't hurt me because I know it is the disease that makes him forget.  Then to lighten things a bit, I tried teasing him about being disappointed that he's stuck with me for a wife,  and not someone else like Marilyn Monroe or Zsa Zsa Gabor.  That did make him laugh and changed the mood.

Then there  were a couple of nights where trips to the bathroom were a real frustration for both of us.  For him because he seemed so confused about what to do and why he was in the bathroom, and perhaps because he was resenting my telling him what to do because at least twice, he flat out refused to lower his pants and to sit down on the toilet--even though that was why he had gotten up.  The second night when this happened, he finally did lower his pants but then wouldn't sit down and kept trying to leave the bathroom with his pants around his ankles.  Worried about his safety, I kept trying to get him to pull them up but he absolutely refused.  I finally gave up and left in a huff to go back to bed.  I was really angry, not so much at him--though I expressed it at him--but at the powerlessness I felt and the terrible cruelty of this disease.  And I was very tired--this was at least the 3rd trip to the bathroom that night.  Fortunately, he returned to bed safely and was soon asleep.  I, on the other hand, could not sleep--full of regret about my angry outburst, but also still feeling angry and scared and helpless.  I did eventually fall asleep but woke in the morning still heavy with all those negative emotions.  Bob was already up and also still on edge.  We tried talking over coffee, but that is next to impossible for him--though he was the one who initiated it.  Instead, we ended up crying, both of us, and that ended in hugs, and was followed by breakfast.  But all that day, Bob seemed very helpless and followed me every where--even when I just went to get something in another room and returned right away.

He has also been tearful frequently each day.  Most of the time, the tears seem connected to something he's trying to do but can't (zip his jacket, put on his socks, for example) but sometimes they seem to come from something he is thinking about but, of course, he can't tell me what it is. Tonight, when we were watching Hope, he disappeared to the back of the house at one point and I heard him crying softly.  When I went to find him, he was standing back by the washer with his head in his hands.  It broke my heart to see him so lost; this has never happened before when the kids were here.  (Hope was busy setting up a tea party in the dining room so she wasn't aware of it, and I got him to come join us for the tea party which seemed to make him happy.)  Because of all this, I emailed his doctor who prescribed the antidepressant and asked whether we could up the dosage a bit. The psychiatrist was out last week, but his nurse said he will likely get back to me about it this week.

In addition, I have noticed a HUGE increase in Bob's inability to understand words.  I have asked him to get the dish towel and he goes to the refrigerator, have suggested he brush his teeth and he starts taking off his shirt--lots of things like this every day this week, much more than usual.  We stopped for a quick lunch when we were out running errands the other day and he had a lot of trouble getting out of his seat belt and out of the car, and when I tried to make light of it, he said he was really worried about himself.  I told him that I am, too, but that I will do all I can to help him and keep him safe.  And when we were out shopping, as well as today walking in the park (for the first time in weeks), he seemed very frail and uncertain.  I took his hand and snugged his arm close to me trying to help him keep up, and also to make sure he had support.

And then, there's the increased difficulty for him to get his medicine down.  I finally asked the primary doctor if there are other formats for his meds.  One of the larger capsules--galantamine, for the Alzheimer's--is available in a patch which has been ordered.  A couple of others are available in liquid form and have been ordered. The other meds he takes are small enough to put in a spoonful of applesauce which seems to work so far.  Bob is also having more and more difficulty with getting dressed and undressed so I'm helping a lot more with that now, too.  One day this week, I stepped out for a minute to get something and when I came back he was trying to put on the jeans he'd taken off ON TOP of his pajama pants.  I've noticed that if I don't remove any other items of clothing as soon as he takes them off (or keep them out of sight until he needs to put them on), he seems to think he has to deal with them somehow.  I even have to keep my clothes out of sight, otherwise he's trying to figure out how to put those on.

Tuesday, January 31
  I want to add a bit to what I wrote the other night about Bob's declension this week.  I can hardly believe how much he has lost in the past 10 days!  Yesterday we picked up Hope at school shortly after its start because she was throwing up.  She spent the day here, mostly sleeping, but sometimes wanting some TLC from me.  At some point in the afternoon Bob appeared agitated and then took off out the front door saying something like, "I'm leaving.  I'm out."  When I asked where he was going, he just shrugged and headed down the driveway.  My mind was racing as I went off in pursuit--is this where we're headed now?  what if I can't get him to come back?  should I call police?  maybe Donna or Steve (our neighbors and friends) could go after him (since Hope was alone in the house)?  When I caught up to him, halfway down the drive toward the road, it dawned on me to try asking him for his help.  It took a little coaxing, but he did come back and I got him to help me make our bed which was still unmade because he had slept from about 9:00 (when  we'd returned with Hope), until about 1:00--very, very unusual for him, too.  This episode was especially frightening to me; it was the first time he ever did anything like it--and I suspect not the last.

And then there's his walking.  The last few times we've been out, I've felt really nervous about whether he was going to fall.  That seemed especially true today.  I had called the VA social worker yesterday to see about ordering a toilet seat riser and/or the hand rails you can put around the toilet (because he's having more and more trouble, especially at night, sitting down and getting up.)  When the social worker called back today, she asked about other things Bob might be needing, too, that we could include in the order.  She mentioned a "roll-a-tor" or walker for when we're out and about.  As luck would have it, there is a physical therapist coming tomorrow (her second visit) so I told the social worker I would ask her what she thinks of the idea.

And while he's still feeding himself, it's getting visibly harder for him to do.  Tonight we had leftover pizza and he kept trying to cut it up with a fork even when I said several times it was okay to use his fingers.  Finally, I cut it up in bite-size pieces and even then, he struggled to eat it.  His bowl of ice cream seemed to puzzle him, too.   I know all of these are signs the Alzheimer's is deepening and he is moving into a later stage.  It's so hard to watch.  He struggles with almost everything now.

Wednesday, February 1

Today began unfolding for us around 3:00 am.  Bob got up to go to the bathroom and I went with him, but when we got there, he absolutely would not sit down on the toilet.  He had a "death grip" on the window sill and once I got him to release that and turn around, with his back to the toilet, he went rigid and wouldn't sit down.  It seemed he was afraid he would fall, so I finally gave up and we went back to bed.  This happened twice more but after the third time, I was getting worried about what would happen once he could no longer "hold it." Around 7:00 am he was again getting up.  I was going to wait and see how he did but then I realized he was having trouble even getting out of bed.  He was sitting on the edge, but leaning over on his left elbow.  He sat and struggled that way for about 5 minutes.  Finally, I got up and went around to help him up.  When we got to the bathroom, same thing as during the night.  This really started my "worry machine."  At that point, I decided I'd get him into the disposable briefs we have as soon as I could.

All this made me really frightened, though.  I couldn't imagine how I would cope if he could no longer use the bathroom.  On top of that, he could not figure out how to drink his coffee at all, and finally gave up, even after I'd switched it into 2 different cups.  Even harder to see was his blank, empty face as he sat across from me.  He was in a different space entirely, and didn't seem aware that I was there.

As I sat there worrying and fearful, I began to think of who I could call, and what might be helpful.  I started by calling the VA, leaving a message wondering whether Bob might have a UTI (I've been reading in an online support group that those can severely change a person's behavior).  Then I called the home health office and asked if they'd found a toilet riser (they were going to check on that for me yesterday) and would they send it out with the physical therapist who was coming today.  They ended up not having one, but purchased one for us to borrow until we receive the one ordered by the VA!!  The therapist even installed it for us.

Then I decided I didn't feel up to facing all this alone today, especially since I knew we were also supposed to take care of David this morning and Esperanza had already had to reschedule her Tuesday clients due to another commitment.  So I called Janice--our friend, a retired nurse, and former caregiver for her mom-- but somehow we missed each other.  Then I called Donna who was just getting up.  When I shared the story, and my fearfulness, she said she didn't have much on her agenda today and would be over.  She arrived at the same time Esperanza and David did!  By that time, Bob and I had had breakfast, but it was really a struggle for him to eat.

Once Donna was here, entertaining David, and sometimes Bob, I was able to get a shower and to make a couple more phone calls I'd been needing to make.  Then I got Bob ready for the day and for his session with the therapist.  Steve came by late morning to check on us and to take orders for anything from the coffee shop where he was headed; he returned later with lattes for all of us.  Donna took David over to their house to see their chickens (he was excited to do that) and kept him busy afterward with a movie, a cookie and snuggling with their dog.

Meanwhile, the therapist came, thinking she was going to share our lunch time so she could decide if there were ways she could help Bob with eating.  Instead, I filled her in on all the things that have been going on since her visit a week ago.  After that, she installed the toilet seat, suggested we put a short bed rail up on Bob's side to assist him in getting up (we already had this, but haven't installed it and she discovered we need a couple of "straps" that weren't included so she is going to try to locate some for us.)  Then she did some exercises with him using a small bicycle-type exerciser she had brought.  She said it's especially important for Alzheimer's patients to get aerobic exercise and she thought this might help Bob do that.  He didn't seem too crazy about it at first, but eventually kind of found his stride and said he liked it after all.  Cydney, the therapist, also strongly encouraged us to consider asking the VA if they would send Bob a stationary recumbent bike to help him keep exercising.  I have already placed a call to the social worker who has been so helpful in ordering things for him.  The p.t. and I talked some about his possibly using a walker when he is out with me but she is inclined to think that might actually be another danger for him if he's not really able to process how to use it correctly.  I wondered if a cane might help, and she is going to come by tomorrow to assess that possibility.

By 1:30, Esperanza was picking up David so Bob and I headed off for a walk in the park because it was a sunny (though cool) afternoon.  While we were there, his sister Barby in Florida returned my call of earlier today.  (Donna had reminded me that Barby has said--more than once--she will come whenever I let her know she's needed.)  The upshot of that is that Barby is arriving in Santa Fe next Wednesday, Feb. 8, flying on an open ticket, planning to stay as long as she can be helpful!  I am so relieved.  This journey, with all its serious decisions to be made, has begun getting lonelier and scarier.  It will help a lot to have another family member here to help me sort through some of these things.  And it will help to have her here so that I can get out to appointments with folks who can give me more information related to those decisions.  AND it will just be nice to have her happy, loving, upbeat self here.  (Her husband used to tease her that if he ended up in hell, he hoped she'd be there, too, because she can find something positive in any situation!) When I told Bob tonight that she was coming, he teared up and then he said, "thank you."  He was glad I had asked her to come, and he let me know that he is also relieved because he has been worrying about me.  I had no idea of that before!

Tonight was the first time I actually helped Bob take his shower.  I have been helping him get ready, and get the water temperature right.  But he has had some problems recently and last night when he was finished and I went in, as usual, to turn off the water, I discovered him holding on with both hands to the newly-installed hose part of the shower.  I decided he probably needs my actual presence throughout the shower now, but wasn't sure how he'd take it--would he feel I was encroaching further on his independence?  To my surprise, when I told him I was planning to help him with the whole shower process, he thanked me--as if maybe he's been a bit fearful himself doing all that.

So our day together has ended.  Bob's already asleep.  Both of us are much lighter tonight, feeling so grateful for the easy, loving support of our neighbors and friends, Donna and Steve; for the practical solutions (for now) to his toileting issues and for the agency's kindness in making that happen today; and for his sister's quick response to our call for her help!  I told the therapist today that it seemed like this Alzheimer's journey had been like a train going uphill, chugging along but not going all that quickly, and then suddenly in the past 2 weeks, the train is careening downhill almost out of control. Tonight, it feels like although it still may be careening, it isn't quite as  unmanageable as it felt this morning.