Crossed Fingers: Always Together

http://www.nytimes.com/2010/12/14/health/14alzheimers.html?_r=1&ref=science  This link connects you to a good article on Alzheimer's and new paths in research.

Sigh, so little time to Blog and so very much to say about how our lives are shaped by Mom's Alzheimer's.    Not an hour goes by, unless I am preoccupied with work or working out,  that I don't think about my mom and dad.   My latest preoccupation has been a rather Poe like focus on what mom's last crystal clear thought may have been.  When did she have that last clear thought or cogent image and what was it of?

It could have been an anxiety provoking image because as we all know these sorts of things tend to stick to us like glue to a table.  What if it was dad's stroke and him lying in the hospital bed?  What if it was  Griff while he was in treatment in Wisconsin?  What if it was the memory of gathering her belongings and leaving their home in De Pere?


The flip side to this of course is the strong possibility it was an image of my dad making the crossed finger symbol showing they are always together.  Sheryl  told me that mom made the crossed finger symbol when asked what she thought of the day program they were touring.   It is a symbol that dad uses to say they will always be together.  Sheryl and Dad understood by the symbol that mom made that she would be fine and happy as long as she was with dad.   Needless to say she is not spending her days at a day program.  This makes a case that maybe this symbol is her last memory.

 Or it could be an image of the Fjord's in Norway that we saw 18 months ago.  It could be an image of us all watching a winning Packer game.  Perhaps it was a simple image of her four daughters laughing together.

More likely is was a mundane thought like "Do we need milk? " or "Look at that squirrel."


It seems like there should be a ritual to mark the moment of one's last cogent memory.  Perhaps a short essay to mark it or a picture to put in a time capsule would be a sufficient way to do this.  Of course there is a major problem with this.  How do we know when we are having our last cogent memory?  Better yet how does another person know when we are having that last memory?

I can just hear my mom telling me not to worry about this because it is something we have no control over.  I can hear my dad saying it is not important and what does it matter?  After all, in his brilliance,  he is the one that came up with the crossed finger symbol that relieves anxiety, shows love and somehow stays with her.

I can Depend on you

I am not sure how my daughter Sararosa does it. Last night she pulled out the goofy sunglasses from my dad's eye surgery and started goofing around with my mom.  Mom has always been light of heart and silly but it is not often that I see this theses days.   I wonder if when she is laughing and playing with my daughter she feels like a grand mother once again.  Over the past weeks mom has become increasingly incontinent of urine.  My poor mom has moments of understanding exactly what is going on.  She will say things like"this shouldn't be happening.  I am sorry."  Despite our reassurance or comforting it was clear that the incontinence was making her feel bad about herself and her circumstances.  With some trepidation and sadness we started a regular toileting program which helped only a bit.  With more trepidation and sadness last weekend we started using Depends instead of underwear.  I think ,but can't be sure, she is accepting of this.  She sees the Depends and chuckles a bit and then it is done.  No more accidents to remind her of what she is loosing.  In fact do I sound like a Depends commercial?
  
So it is we laugh and pretend we are the woman on the Depends commercial and life is fine now that that problem is no longer a problem. If only the rest of the losses of Alzheimer's were so easy to remedy.

While I was Away This Summer: Remembering

Help I am Stuck!

Off to camp Sararosa goes tomorrow so we stopped in to say hello and good - bye to mom and dad.  Dad was sitting on that darn couch like a beached whale with his stomach protruding from his shirt and no practical way of moving from the spot.  I cringe to think how long he had been there and how he would have gotten out up if Tom and I didn't  hoist him up.   Poor guy was having a difficult time with word finding and motor skills.  Hos fatigue was evident despite his denial of it.   Mom looked good and spoke in almost full sentences and laughed at dad's difficulty with getting up.  She answered the door, gave us all great big hugs and was very aware of who we were.  Can't they both be good on the same day and enjoy each other?

This weekend Sararosa and Isabelle took mom to the bathroom while they were out and about.  Mom got in the stall and asked why she was there.  Sararosa said it was so she could go to the bathroom.  Mom then said she didn't want to go and got kind of upset.  Sararosa and Isabelle gently said it is fine Bubbe you don't have to.  But then mom sat on the toilet seat fully dressed and waited for them.  Sararosa said that mom had forgotten that she had to go to the bathroom.   The kids sure had learned how to be gentle with their grandparents and even showing empathy for our pain.

I guess this is a glimmer of light in an otherwise dark situation.  We are lucky that the kids have learned to nurture and to care like this.  This value runs deep and was passed from our parents and our in laws as well.  A nurturing group of people sure makes the journey easier.   I also feel like my sisters and I will be well cared for by our kids when the time comes.

Tallit Ceremony

Sararosa is on the brink of becoming a young woman and on Monday she received her Tallit and the ethical will we wrote.    She insisted on having her Bubbe and Zayde there for the ceremony.    Despite my best efforts I could not get out of bed and help my dad get mom ready for the morning.  I was exhausted from the half marathon I had run the day before and the sleep deprivation of the nights before.  Dad is the only person besides me, in the family that can really get going in the morning no matter the time.  When he and I would go to professional meetings in Boston he was always up way before me grooming for the day.  In other words I should not  have been surprised that he was up and ready and waiting for me.  All was set except he didn't know how to blow dry mom's hair.  Got to laugh cause I don't think she was much into blow drying her hair.  Well we arrived just in time to a wonderfully crowded room and had to squish into the corner and stretch our necks to see.   A fantastic feeling to have a room filled with nachus and kids eager about their Judaism.  Mom hung with us with her dripping nose and dirty Kleenex.  I needed to get more for her and she kept showing me but I didn't want to miss the ceremony. She kept looking at me as if I had wronged her.  Not anger in her eyes, just not understanding why I didn't get the Kleenex immediately for her.  It was after the ceremony that mom started her gig and being silly.  She used to do this in a more appropriate manner with my friends when I was Sararosa's age.   Even then I was embarrassed even though my friends adored her.    That guilty feeling of embarrassment rose in me once again but this time I had shame with it.    How can I be so obtuse?  She has Alzheimer's, a brain disorder.  What she was doing was nothing to be ashamed of.  But old feelings and habits die hard for all of us.  I am sure it was her way of releasing anxiety and trying to interact with the kids.  Sararosa was so good to her and nicely redirected her.    Then I blow it again by pointing out dad's nose hairs/ Both Tom and dad said I meddled too much.  They are right, so right.  I think it anxiety that elicits that behavior.    We all continue to grow.  Sararosa is on the brink of becoming a young woman and is well equipped for it.  Mom is moving as gracefully through the stages of Alzheimer's with as much dignity and integrity as any person can.  I anxiously look at what is ahead and wonder what will happen to me in the years ahead.

What is She Thinking?

Last night we went to see the Ed Schultz show live at the Parkway with mom and dad, Tom, Sheryl and me.  You must understand Ed is the Lefts' TV equivalent of Billy Graham.  He hops around and yells and reaches out to you and you and you.  Fire and brimstone left wing political talk show TV and radio.  so what does mom make of all of this.  She must have no idea who he is or what is going on from moment to moment.  To put yourself in her shoes even for a minute must be terrifying.  Yet she tries to laugh, she sometimes looks alert and at other times shuts down and falls asleep.  At no time is she asking questions, screaming or looking stunned.  I really wonder what if anything goes on in her heart and mind while we take her all over town for activities that dad and the rest of us want to attend.  She is a good sport about it all.  At times it reminds me of the stage of infant development 1 to 6 months that we would lug our kids to movies or concerts or out to eat with us.  They were simply there for the ride. occasionally they would wake up and cry but then soon be soothed back to sleep.  I always wondered what a baby took in during those early excursions, likewise for mom.


I am running a half marathon tomorrow so off to bed I go and hopefully have a blissful  sleep.

Political Preoccupations and Preoccupations of the Heart

Today in the news Israel is still being condemed  for boarding a flotilla on its way to Gaza, the oil is still gushing,  and North Korea remains a threat for South Korea.   On the exterior it is these issues which seem to occupy or preoccupy my dad on a day to day basis.  At The Good Earth Resteraunt tonight dad seats himself next to Tom and eagerly discusses the issues of the day, especially Israel.  Only Tom is allowed to answer or argue with him.  He has become more sexist since his stroke and directs his conversations to the men in the room.
 At times I feel like I could slip away and not be noticed.  I wonder at those times if mom has any perception of her social isolation and inability to share. Tonight she didn't seem aware of her surroundings and stared at arm chair handles, the sky, and Griff's dirty hands.  She also looked at dad as he inhaled a chocolate malted in a rather messy manner.  He on the other hand,  had no awareness that he was consuming 800 plus calories and a burger and chips as well.  His shirts are getting tight around his gut and now I know exactly why.   Sararosa kept hitting my leg and asking if Zayde knew it was dinner and if it was safe for him to eat so much.  I didn't even try to suggest that he eat less because his response would have been defensive.

It hurts to reflect on what is really going through my head at these dinners together.  I wonder what the children think of their grandparents; I wonder if mom understands what is going on with her;  I wonder if my husband will care for me if this happens to me;  I wonder if dad will have a heart attack from his horrible diet.  

On the interior my dad is preoccupied with mom's happiness and well being.  He asks me if the geriatric psychiatrist has any medications to further help mom's memory.  He asks me every time I see him if mom looks better or if he did a good job grooming her or ordering her food.  She used to dote on him and now the roles are reversed.   In private he talks of how cruel the disease is and how helpless he feels.  He does not sleep well at night but denies he has much on his mind. 

It is the issues of the day, the politics and the drama of the gulf oil spill or health care reform that keep him going and I bet he feels like the smart engaging person he has always been.  But I know all too well, from personal experience,  the forced smile,  the division of your mind between your hurt and trying to stay engaged and positive, and the need to minimize problems and deny your hurt.   An exhausting way to live but for now it seems to be a way he can get by and have a semblance of a normal life on a day to day basis.

"Come on Eddie"

Mom gets restless and likes to get out of the house. She has always been more active than dad and now he has to get up and go with her.  But looking at them truck down the block together was heartening.  Last year dad needed assistance and fatigued easily after his stroke.   July will be the year anniversary
of his stroke,  a moment that will forever define the lives in our family and those close to us.  Alzheimer's on the other hand is insidious.  It plays mind games with those around the affected person and of course with the person.   Did she really forget my name?  Did she forget how to shower?  Oh not yet,  that can't be the stage we have reached!  Everyday a bit more slips away from mom and dad seems to get a bit better.  What a cruel equation that is for them but especially for dad.  He keeps a smile on his face and hope in his heart.  Amazingly he has learned to help mom bathe, he blow dries her hair, goes for walks, and orders her yuck food as he calls it  ( Vegetarian food).  Yesterday she spilled food twice on her pants.  Tom leaned over to help her clean it up and they made more of a mess.  Mom and Tom cracked up and then dad teased mom and mom laughed some more. Those moments of connection are there and for a moment it is like old times again.  But look at Millie and Eddie, what good spirits and sports they are.  We are so lucky to have them as parents.  And they are getting by so much better than 11 months ago.

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Thank you all!!

The Birthday Party - Good as it Gets

Here we are at Ciao Bellas',  yet again.  A happy crew and a low key night celebrating Sararosa's 12th birthday.  She gets older but the rest of this gang just stays put and is doing the Benjamin Buttons thing and getting younger. 

Mom smiles and looks at us and tries to add to the conversation but this is especially difficult to do in a noisy crowded place. We all have a difficult time hearing one another and much of the conversation was dead ending because of that.  Note to self and others, eat outside where mom can comment on planes, flowers and the beautiful night and we can all hear one another.


As we left and headed for home mom notices the roses and the people and the busy street.  She never missed a thing when we were kids.  If we took something like alcohol from the cabinet she noticed the bottles rearranged.  She noticed the good and the bad, the flowers and the beautiful sunset as well as the wool we tried to pull over her eyes.  She continues to have keen senses of sight and sound.  She can hear things most of us can't and she notices small details, like fuzz ball on sweaters. 

In a year Sararosa will be a Bat Mitzvah and I wonder where things will stand with mom and dad and the rest of us for that matter.  For so much of life we look forward to the next age or the next year.  But part of me wants to freeze frame this time for a bit longer.  Sararosa is a beautiful young woman still liking to be with her parents, grandparents and aunts and uncles.   Dad is looking good and thinking more clearly these days and mom is in good spirits.  The rest of us in this picture are happy, healthy,  and loved and in love. What  is ahead for this crew?  We all know Sararosa will become a teen, and the rest of us will grow old watching her go through it.  I brace myself.  But tonight we are just right.    It is as Good as it Gets and we are lucky in so many ways.

A Little of Italy

It was at this moment I knew my parents were at home here in the Twin Cities. We walked into Ciao Bella in Edina and the staff welcomed Eddie and Millie as if they were long time patrons. Dad said they had walked three long blocks to get there and ate a late lunch. Mom had been restless and convinced dad to get a late afternoon lunch. Dad's sense of time is off and mom seems to have lost her sense of time. Anyhow they had enjoyed a long lunch and left a very good tip because the bill confused dad a bit. Their fine and funny dispositions and generous tip left a memorable impression on the staff.

Dad kept saying: " aren't these sauces fine, a little of Italy. " In fact the sauces were fine and the service was tender and efficient. When mom and I took our evening stroll to the restroom the wait staff very gently walked us over and made sure we were taken care of. Almost wiped our..... Kidding.

As I held mom's hand off and on and she pointed out planes , Tom and dad spoke of Italy, the oil spill and Obama's inaction. I think dad has become a chauvinist and thinks men plan trips, speak of politics and figure out the tips. Mom and I sat in our own world as the men spoke. She couldn't find words and got easily frustrated even pointing out the planes. She smiled and couldn't follow the conversation.

The warmth of the late spring season passed over us as we enjoyed the the little taste of Italy together and the warmth of our love and history together felt so good.

The Olive Garden of Green Bay has been left in the dirt! How time change things. Ciao Bella the new " Cheers" a place where they belong.

Here we go again with Lou Reed coming to mind with both of his tunes Beginning of a Great Adventure and Bus Load of Faith to get by.. So which is it?
Two soul mates of the mind sit together creating music. Mom remembers to tell Griff to work on him music, get a girlfriend, not to use drugs, and to work. Griff is amazed by this but " does she remember my name mom" Griff asks after we leave mom and dad once again. Not sure if she does. She has called dad Ellie by accident always correcting herself but not getting it right the next time. More later.

For you Mom

At one point when my son was not doing well and my mom was aware of what was going on she bravely said: " It is not fair that he has to struggle so in life; I have had a good life and something happens to everyone at sometime. I have lived a good life and he hasn't even had a chance. " It is these words that grab my heart with pain and quell it at the same time. What a brave and insightful woman she is and has always been.


It is an odd phenomenon to look into your mother's deep brown eyes and to see her so far away. This has become so obvious as I look at her day to day and in the photos I take. Mom has been so present for us over time. She would listen and think and help you see things a new. She always looked you in the eyes even on the phone I could feel her gaze and attention. Mom always had, and still does, to a large extent had the ability to read how we were doing emotionally. There never was a way to fool her into thinking things were fine when they really weren't. She can still look at me , and I bet my sisters , and ask are things alright honey? She doesn't remember my name, but knows when things aren't right. She has been a coach when I was ready to hang up school, work or parenting any number of times. She hung in there and made me feel like a good parent despite having some really tough kids. She helped us kids and so many of our friends to believe in ourselves. Empathy.

So it is for you mom that I write this blog, It is for your daughters, grandchildren, son in laws and husband and friends to share your life and wisdom. I hope we can preserve these memories and unearth some from the past as well.