Thanksgiving Prayers

Bless us, oh Lord, and these, Thy gifts

Fortunately, our family has been blessed many times, and in many ways. We have been especially blessed to have a close, loving, and supportive family, and we were all together for Thanksgiving last week.

It was a quiet holiday spent at my sister's house, with the requisite football and overeating. It was a peaceful and loving day, and it seemed that each of us focused our day around Daddy, each in our own way.

I've noticed that, without a word being spoken about it, we are circling the wagons around Dad. It's difficult to describe, but each of us nurtures, supports, and protects him in different ways. It's good for him, of course, but it is also good for us as well. We have grown closer to our parents, and to each other, as a result of Daddy's Alzheimer's. It's a comfort to me to share that closeness with my siblings.

When it can time to say Grace Before Meals last Thursday, we all suffered together. Daddy, a devout Catholic for all his 85 years, has forgotten how to make the sign of the Cross and some of the words to Grace. We all covered, and Mom helped him out, but I know my brother and I were visibly in tears. I'm crying again now, remembering.

Learning Lessons

Do not dwell in the past,

do not dream of the future,
concentrate the mind on the present moment.
-- Buddha

My father is teaching me some important lessons about life.

I have come to an intersection on the highway of my life, and standing here with Daddy is making me view the road in a whole new light.

Daddy lives in the moment. He has lost the need to worry about the future, and he is rapidly losing his past as well. He is happy or sad at each moment in time, encapsulated in itself. This is more of a blessing than you can imagine.

I, on the other hand, worry. A lot. That's what I do. I also waste an inordinate amount of time and energy on regrets. All the while, I missing what Daddy is experiencing: the present, the here-and-now. I was in therapy for years. My therapist was constantly trying to teach me "mindful awareness" -- shrink-speak for "living in the present."

So now I look at my father, bent with age and feeble. A man whose brain is gradually consuming itself. A man approaching death. Guess what? He is showing me how to live, just as surely as he taught me to ride a bike and drive a car and dance. He is teaching me to appreciate the immediate, to cherish the small moments that make up life.

I'm a shitty student when it comes to things like this, but I am trying. I refuse to continue on as I did before, worrying and fretting and making myself crazy over things I either can't change or can't control. I am no longer witing for my life to start, because as I sit here waiting time is moving along.

As the man said, "Let's roll!"

Sliding Downhill

Sorrow turns the stars into mourners,
and every wind of heaven into a dirge.
Patrick Hannay

Living here, I am seeing more and more clearly how rapidly Daddy is declining.

His physical health is deteriorating rapidly. He is now a frail, feeble old man who is less and less able to care for himself. The spinal stenosis, of course, is a large part of his disability, as it impedes his ability to walk. The Alzheimer's complicates that by rendering him unable to remember how to use his walker correctly. Often he even lacks the strength to stand up on his own, and needs help getting out of his chair.

He is losing his table manners, and although neither my mother nor I say anything about it, it is apparent to both of us. We make his sandwich for him at lunch, and generally serve him the majority of his dinner. There have been times when we have needed to cut his meet for him, and frequently we need to instruct him on how to eat certain things. His appetite is excellent, and despite complaining at virtually every meal that we have given him too much food, he manages to eat every morsel.

Quite often has trouble in the bathroom these days. There are times that urinary accidents force him to change his pants in the middle of the day, and from time to time he needs to be re-showered due to difficulty in managing bowel movements. Thankfully Mom is angel of heaven in these situations, as I tend to collapse like a cheap lawn chair.

My sweet, loving, and gentle Daddy is also undergoing personality changes as well. He can be very suspicious and demanding, and at times downright disagreeable. Despite knowing the origin of these behaviors, I still find myself deeply upset when he yells at me. His bad temper one of the things that hurts me most to see, since it is so unlike him.

There are times, more frequent, that he is compliant and sweet. Sadly though, he is also becoming more and more childlike every day.

Regression and deterioration, both physical and mental, are wreaking havoc on my poor father.

Losing language

In Alzheimer's, the mind dies first:

Names, dates, places-the interior scrapbook of an entire life-

fade into mists of nonrecognition.

Matt Clark

Both temporal lobes of my father's brain are showing the impact of Alzheimer's.

He is forgetting us, his children, slowly but surely. He may know who we are at any given moment, but in the next instant that knowledge is gone. He can be sitting with me, looking at an old family picture, and not know that he is looking at a photograph of me. A large portion of the time he can still identify us as siblings, or as his children, even if he can not put a name to a face. Other times he is as clear as a bell. Sadly, the clear times are becoming few and far between. Last night he confused me with my mother. It was heartbreaking for me to hear.

His ability to retain information is very limited now. He repeats questions endlessly. It is virtually impossible for him to learn anything new; he is having great difficulty hanging on to what he has known in the past. Every day brings a new and noticable cognitive deficiet.

How much longer will he be able to hang on? Do I even want to know?

If You Don't Laugh............

Comedy is an escape,

not from truth but from despair

Christopher Fry

This morning brought a sadly amusing Alzheimer's mini-event.

Mom brought Daddy's slippers out of his bedroom to show me. Instead of a pair of socks, Dad had stuffed a pair of underwear in each one. It was such a silly thing that we both had to smile at it, and share an poignant chuckle.

There are more and more moments like this now, indicative of the steady progression of the disease. If looked at within the larger context, these little things will break your heart. So instead, whenever we can, we look at the event in isolation, grasping desperately for the humor.

Sundowning

Sed fugit interea fugit irreparabile

Virgil

Daddy has started falling asleep a lot during the day. His body is exhausted; it is obvious that it is preparing for "The Big Sleep".

This is referred to as "sundowning", and it is common in Alzheimer's patients. This page from the Alzheimer's Association explains it clearly and concisely: Sundowning

It is so distressing to see him sleep in his chair for hours on end, his body slumped into contortions. When we wake him up, he responds for a moment, but literally falls right back to sleep. When Mom persists in waking him, he gets quite cantankerous with her. Last night he was downright nasty when she tried to get him to go to bed early.

He is still waking up quite a bit during the night, generally 2-3 times every night. Of course Mom wakes up with him, and frequently has to go downstairs to get him back to bed. He tends to be very disoriented during these midnight wanderings, but he is also generally quite compliant about returning to bed. Knowing that these things are symptomatic of the disease doesn't make it any easier to cope with. Some days the sadness of it all is enough to break your heart into a million shards of glass.

Welcome Home

Where thou art, that, is Home.

Emily Dickenson

Mom was hospitalized for several days recently.While we were all frantic, Daddy was even more distressed. To add to the mix, he naturally couldn't remember where she was, why, or when she was coming home. He exhibited some of the Alzheimer's suspiciousness, questioning us and demanding that one of us "tell the truth about where Mom is". We did our best to comfort him, and keep his routines as normal as possible, but he was absolutely and completely a rudderless ship without her.

When she finally got home, Daddy's face lit up like a Christmas tree. His smile was one of total joy as he raised his arms for a hug and kiss. He said something along the lines of "I haven't seen you in so long, and I missed you so much!" She hugged and kissed him and they exchanged "I love yous". It was so beautiful, so tender, so wonderful to witness. Through it all, love is a beautiful thing.

You must remember this

A kiss is still a kiss, a sigh is just a sigh

The fundamental things apply
As time goes by
Louis Armstrong

Mom hasn't been well recently. No one is quite certain what is wrong, but she is, most definitely, in poor health. She is not a person who complains about physical ailments; she never was. Daddy has been fretting about her, and has obviously been unable to do anything to help her.

The other day she was sitting on the couch, resting, her head back and eyes closed. Daddy came into the den from the kitchen. He now walks slowly and painfully, his left leg virtually useless from spinal stenosis and subsequent neuropathy. Of course, he doesn't use his walker properly, because he can't remember instructions.

He paused for a moment in the doorway, and watched my mother with a worried expression on his face. He crossed the room, and made his way over towards where she was sitting. When she realized that he wasn't going to sit in his chair, as he normally would, she sat up and asked him what he was doing. As he was trying to bend down to reach her, he replied, "I just wanted to give you a kiss". She rose up to meet him, and they shared a long embrace and several kisses, and she told him that she loves him. He answered that he loves her, too, and held her as closely as he could.

Thank God, Alzheimer's hasn't defeated the love they have shared for 60 years.

Where Does the Lone Ranger Take His Garbage?

To the dump, to the dump, to the dump, dump, dump!

"Back in the day" we didn't have garbage pick-up at our summer home. Daddy would have to load the garbage cans (along with various kids) into the back of the station wagon, and bring it to the dump. As bizarre as it sounds, we actually considered a trip to the dump a fun thing. Much to Mommy's dismay, none of us - Daddy included - ever returned empty-handed. Other people's junk was always cool, and we always managed to find a "treasure" discarded by another family. Of course, the reality is that junk is junk, and a skateboard with 3 wheels or a broken umbrella is honestly and truthfully junk. We never saw it that way. We would drag home these discoveries, only to have them mysteriously vanish as quickly as they had appeared. Of course, there was always the next week and the next trip to the dump..........

These days, the town has a "designer" dump. Excuse me, it's a "landfill" now, and all garbage must be in special yellow bags. Everything has to be separated; everything has to be sorted. I understand that ecologically this is sound practice, but it sure as hell has taken the fun out of garbage.

The Annual Picnic

Play is the exultation of the possible.
Martin Buber

During the summer, we lived in a small community, in a rural area, about a block from the beach. Every year, Daddy would round up all the members of the local property owners association, and plan a big picnic/barbecue. I don't remember much about the food, although I do recall the men all grilling (burgers and dogs is my guess) What I remember most is the races. We had potato sack races, wheelbarrow races, three legged races.......and probably many more, including speed races. There were prizes, although I have no clue as to what they were. I just remember spending the day playing in the park. That park is on the top of the bluff, overlooking our beach and the beautiful bay. All our friends and family were there every year, and it was always one of the biggest events of our summer. And of course, like most memorable things in my life, Daddy was right there at the center of it all.

Today was a beautiful autumn day. The sky was that bright blue you see best in October, and the air was warm, with only a hint of a breeze. Mom & I loaded Daddy into the car, and we drove back to that park. It was hard for him to get to the park benches where we wanted to sit; he had trouble maneuvering his walker on the grass. He persevered, with Mom & I on either side, helping him. We sat there for about an hour, watching a few sailboats gliding effortlessly across the water. We saw a school of bait fish swim through, frantically trying to escape from the bluefish that were right behind them. We watched as a a few terns and seagulls tried to catch supper.

We talked about those picnics today, and reminisced quite a bit. How much Daddy really recalls is sometimes hard to say. He wants to participate, so he does his best. Mostly, though, we just sat and enjoyed the day. It exhausted him (and us, as well!) but it was wonderful. I loved seeing him out and enjoying himself, even if only for a little while.

Saturday Lunch

We should look for someone to eat and drink with before looking for something to eat and drink.

Epicurus

One of the constants in our childhood was always eating meals together. It was probably the only time we were all in the same place at the same time. Dinner was #1 on the "be there or else" list, but lunch on Saturday was close behind.

It was never a fancy meal, just sandwiches. Very often one or more of our friends joined us. There was lots of talking, and teasing, and laughing, and arguing. There were many times that I was frustrated at having to sit at the table with everyone else (and ask to be 'excused' when finished) but as an adult I long ago realized the value of family meals, and the bonds they strengthened. I know that eating at our house had a positive influence on other kids as well. Our parents didn't just love and teach us, they reached out to any child who came along.

Lost

Life is about not knowing, having to change,
taking the moment and making the best of it,
without knowing what's going to happen next.
Gilda Radner

Daddy gets lost sometimes. Not just in the metaphysical sense, but honestly and truly lost, where he doesn't know where he is, how he got there, or where he is going.

The other day he got lost in the kitchen. He had been in the bathroom, and was trying to find his way into the den, where Mom & I were. It is a straight walk from the bathroom, through the kitchen, and into the den. He lost his way, and ended up in a corner of the kitchen, between the stove, sink, and island. I had to call him, and remind him where we were.

He also gets very lost late at night. He wakes from his sleep, and doesn't know where he is, or who is there with him. He often is not even sure that he is in his own house. My sisters and I have all been up with him late at night. I'm not sure that he even knows who we are at those times, but we all call him "Dad", and he responds to the name. He always knows our mother, thankfully, and calls for her. Fortunately, he is very compliant these days, and we can get him back to bed fairly easily. Some nights he's awake and up a great many times, some nights only a few. Some nights he wakes up and gets himself dressed, thinking it's morning.

Nights are so difficult for us. I find that even when I am not sleeping in my parents house, I lay awake thinking about them both, worrying and mourning. We all do.

Alzheimer's has robbed our entire family of sleep and rest. It is always with us, a dark cloud hovering, ready to explode into a storm at any given moment.

One of Ours?

Look! Up in the sky! It's a bird! It's a plane!

I was sitting on the deck with Daddy the other day. It was a perfect autumn afternoon: the air was crisp and clean, the sky was blue, and we were there together in the sunshine.

We heard a plane overhead, and we automatically looked at each other and smiled. He pointed to the sky and said, "Don't worry, it's one of ours".

This has been a running joke for as long as I can remember. I've mentioned before that Daddy was a pilot in the Naval Air Corps during WWII, and fought in the Pacific theater. Well, when we were kids, any time a plane flew overhead, he'd jokingly tell us to check it out and make sure it wasn't a Japanese bomber overhead. We'd all look, every time, and every time we laughed together at the silliness of the joke.

I laughed with him again the other day. It was wonderful.

Speaking of Movies...

God gave us memories that we might have roses in December.
J.M. Barrie

When we were kids, Daddy would take home movies of us for all occasions: Christmas, birthdays, Communions, Confirmations, graduations, vacations, whatever came along in our lives that he felt needed documentation. These were days of 8mm cameras, and the developed films were on small reels. At some point, Grandpa had helped him slice a few small reels together into larger ones, but mostly they were all these short movies that would only run a few minutes.

If we begged and cajoled him on a Sunday night, we could get Daddy to set up the huge old movie projector in the living room. He had a collapsible screen that would be at one end of the room, Dad and the projector at the other end, movies piled high next to him. We would all be squirming and fooling around until a movie came on the screen. We would laugh and talk and make jokes. As quickly as they came on, the movies were over, and Daddy would have to rewind the film, and load another into the projector. He would do this over and over and over, until Mom would finally tell us it was time for bed. It seemed like we could never get enough, and we always pleaded (in vain) for "just one more".

We are blessed to have had such a patient, loving father who would readily sacrifice himself and his own comfort to amuse and entertain his children.

Disappearing Dimes & Flipping Ears

I don’t want realism. I want magic!

Tennessee Williams

The other day I remembered something that Daddy used to do that awed and amazed every child who ever witnessed a performance of "The Disappearing Dime".

Daddy would sit with his left arm on the table, and his left hand next to his head. He would take a dime, and with much fanfare, press it against his inner forearm, twisting it, grunting a little, and so on. It would drop a few times, and he'd pick it up and try again. Eventually, with a great flourish, the dime would appear in his ear! No single performance was ever enough for any kid. Daddy would do it over and over again, letting us all try it for ourselves. The more we failed to be able to push a dime through our arms and into our ears, the more awed we were. I enjoyed the magic even more as an adult when I watched Daddy mystify my nephew with the trick.

I was reminded of this the other day. My older sister and I had been having breakfast with my parents, and Daddy did another one his famous routines for us, just out of the clear blue sky. We had finished eating, and Mom was upstairs getting dressed.I had handed Daddy his morning medications, which he dutifully popped into his mouth. As he took a sip of water to swallow the pills, he reached up and kind of flipped his ear over at us, pretending that his ear was the a handle he had to twist to swallow. He had a huge grin on his face, and my sister and I roared with laughter. He used to do that for us all the time when we were kids. Our laughter prompted him to give us the variation we also remembered: he twisted his ear and stuck out his tongue at the same time! None of us could stop laughing. Mom came down to see what was so funny, and he did it for her, making her laugh out loud, too.

It was such a great moment in time; it was as if nothing at all had changed, and we were still little girls whose Daddy loved to make them laugh. Another precious memory to store away and cherish.

Voicemail Hell: Hating Medicare

"We are experiencing
heavier than normal call volume......"

OK, so I called Medicare to get some information on the prescription plan. First I got lost in voicemail, then I was put on hold for an hour. Finally, a live person came on the line. I (mistakenly) thought I would get my questions answered. Instead, I was informed that if I left my phone number I would be called back. I'm a fairly trusting soul, so I gave them the number. I'm still waiting for the call. The next day I decided to try again, this time to find out what kinds of assistance is available for Daddy, and (most importantly) how to go about getting that assistance. Again, an hour on hold. Again, the live person told me that if I left my number they would return my call when they weren't quite so busy. Yeah, right. I said "no, thank you, I'll continue to hold" and was told that I couldn't continue to hold, since I'd been "taken out of queue". Can you imagine? Is this any way to run a country?

OK, I admit I flipped out a bit. Well, maybe more than a bit. When it was suggested that I go to the Medicare website, I think I told a little white lie and said I had no access to the Internet. ( I know that was a whopper! What can I say?) At least I did manage to get the information I needed. I think the poor man who was "helping" me may have thought I was completely insane. Maybe I scared him. Maybe he felt sorry for me. Whatever the case, I got the information I needed.

The point is this: how are people who may not be as persistent as me, or as obnoxious, or as WHATEVER, supposed to find their way through this maze of bureaucracy? How about the people who actually NEED the services Medicare provides -- the infirm elderly -- what do they do without someone to advocate for them?

Your tax dollars at work. Makes you real proud, doesn't it?

At the Movies

A film should be more like music than like fiction.
It should be a progression of moods and feelings.
Stanley Kubrick

Last week I met my brother in the city, and we saw the new movie, "Across the Universe". The movie is difficult to explain. I suppose the best description would be to say that it is an anti-war hallucination set around the Beatle's music. It was magnificent, and seeing it with my brother made it even better. We had dinner afterwards at a great Italian place, and then I took the train back to the 'burbs. I loved being able to just spend time with him, doing something we both enjoy.

I'm pretty sure that the last movie mom saw in a theater was "The Sound of Music", and that was at the drive-in, with all of us in the back seat. She swears she falls asleep the minute the lights go out. Daddy, however, always enjoyed a good flick. He also enjoyed reading Tom Clancy books. Most of Clancy's work is too ponderous for me, but "The Hunt for Red October" and a few others I honestly enjoyed. It was something Daddy & I shared between us. When they began to be made into movies, Daddy & I would make a date to see them together. We would pick a theater halfway between their house and mine, and we would have lunch together, and then go to the movie together. We did this about once a year for quite a few years. It was always fun for both of us, and now it's a warm and special memory for me. I am so glad we spent that time together, particularly now that this is something else we will not ever be able to do again.

Seeing "Across the Universe" with my brother reminded me so much of the lunch-and-movie "dates" I went on with Daddy. It's another memory I will cherish. Thanks, brother. I love you.

The Glass Half Full

Joy and sorrow are inseparable.

Together they come and when one sits alone with you ,
remember that the other is asleep upon your bed.
Kahlil Gibran

So I went to visit again. Mom wanted to shop, and I stayed with Dad. I made baked ziti with veggies, and baked Daddy cookies. Mom was thrilled to have a few hours to herself, and I know Dad enjoyed spending time with me.

There are so many times that he just seems lost, but that day there were many flashes of the real him shining through. He actually teased me! Funnier yet, was when we were eating dinner, which he obviously was enjoying, he looked at me and said, "this is really delicious, but where's the meat?" with a big smile on his face. Mom & I both cracked up. Here I was, thinking I was being slick and sneaking a vegetarian meal past him! I never could sneak ANYTHING past him! A few quips, and a couple of joking comments, and it was like spending time with the Daddy I remember.

It was a day that the glass was definitely half-full. It was a beautiful thing.

Warrior

You can only protect your liberties in this world
by protecting the other man's freedom.
Clarence Darrow

We were looking at old pictures again, much older ones than the ones of our childhood. These were pictures of our parents when they were young.

Daddy was a lieutenant in the Naval Air Corps during World War II. He was stationed in the Philippines. Much more than that, I don't know, because he virtually never spoke of the war or his experiences there. An occasional amusing anecdote, perhaps, but nothing more.

There were several pictures that stood out to me. One was of Dad, on a beach somewhere in the South Pacific, standing with one hand on his hip, and a great big smile on his face. He was young, and strong, and vibrant -- a man in his early 20s, confident in himself, his country, and the cause they were fighting for. The cocky smile in the picture is so engaging, that you can almost see this pilot breathe, you can almost hear him laugh.

The other picture is of Dad seated inside the Hellcat that he flew. It is a completely different sort of picture. Here, Dad is strapped into the pilot's seat, wearing flying gloves and his helmet with the goggles pushed up. There is no innocent boyish grin here; this is a soldier ready for war. You can easily read the determination and courage in his face. He fought for the country that he loved, and to preserve and protect freedom for others.

Two very different images of Daddy, both foreign to me in many ways. A young man enjoying a day on a beach, and a warrior ready for battle. The youth, the strength, and the vitality radiate from the images taken well over 60 years ago. This is Daddy as I never knew him, but it also is Daddy as I love and respect him.

The Man of Her Dreams?

Who ever loved that loved not at first sight?
Christopher Marlowe

Mom told me a funny story yesterday. It was about how she met my father. I knew that they had been introduced by a mutual friend, but that was pretty much all I was aware of.

It turns out that she wasn't so crazy about the idea of a blind date, but had finally capitulated and agreed to a double date. The night BEFORE the planned date, Mom's doorbell rang and there was Dad and their mutual friend. It turns out he wanted to check her out first! Well, she agreed to go for a drink with them. She thought he was a knucklehead at first, because he and his friend were drinking beer and kept getting up to use the bathroom all night. Despite that, she still went out with him on the double date the next night. The rest, as they say, is history. It was 60 years on May 30th of this year.

On Books and Reading

Literature is my Utopia.
Helen Keller

Random trivia: "Harry Potter and the Deathly Hallows" sold a record 8.3 million copies in the U.S. on its first day.

1 in 4 Americans admit to not having read even ONE book in the last 12 months.

What does this have to do with anything? Daddy used to love to read. He still "reads". How much is really understanding? Who knows. He has had the same James Patterson book on the table near his chair for months. He picks it up, looks at the pages, and turns them. To all outward appearances, he is reading. I think he can still translate the printed grapheme into meaning on some level, but I doubt there is much comprehension any longer. Certainly there is little, if any, content retention.

The enduring satisfaction of reading is yet another thing that Alzheimer's has stolen from him. I only hope, at this point, that books still make him happy, even if it is only for a few fleeting moments at a time.

FYI

Facts are stubborn things;
and whatever our wishes, our inclinations,
or the dictates of our passion,
they cannot alter the state of facts and evidence
John Adams

Alzheimer's Facts and Figures

There are now more than 5 million people in the United States living with Alzheimer’s.

Every 72 seconds, someone develops Alzheimer's. By mid-century, someone will develop Alzheimer's every 33 seconds.

The direct and indirect costs of Alzheimer’s and other dementias amount to more than $148 billion annually.

By age group, the proportion and number of the Americans age 65 and over with Alzheimer’s disease breaks down as follows:
• Age 65-74: 2 percent 300,000 people
• Age 75-84: 19 percent 2,400,000 people
• Age 85+: 42 percent 2,200,000 people

13 percent, or one in eight, persons age 65 and over have Alzheimer’s disease. Nearly half of persons over age 85 have Alzheimer’s disease.

By 2050, the number of individuals age 65 and over with Alzheimer’s could range from 11 million to 16 million unless science finds a way to prevent or effectively treat the disease.

Alzheimer's Disease, Facts and Figures,
Alzheimer's Association, 2007

Daddy, Gama, and Me

Life is the flower for which love is the honey.

~Victor Hugo

Daddy's mother, my Gama, was born in 1896. That's astonishing to think about. It has nothing to do with anything, just a random factoid. She was, and will always be, one of the people I love most in the world. She died a month before I got married, 22 years ago, and I still miss her.

When I was a teenager in the early 70s she was already an old woman. At the time, though, she still lived in her own home. I always loved her house--it was tiny, and old, but it was hers and that is what made is precious to me. I remember her kitchen, and the windowsill full of African violets she had in the living room. She had a huge old TV, and she watched Lawrence Welk on it every Sunday night. She also had a wonderful back yard that was always full of flowers. She was an absolutely perfect grandmother, and we all adored her.

She lived about 1/2 hour from us, closer to the city. The summer I turned 16, I had a job at a local supermarket, so I could no longer go out to the summer house with the rest of the family. Like Daddy, I stayed home during the week and worked, and went out there on weekends.

Once a week, every week, Daddy & I went to Gama's for dinner. She had no air conditioning, of course, just several large fans. Summer heat never daunted her one bit. Every week she prepared a huge, heavy dinner for the two of us, complete with dessert. I think she was afraid we were living on PBJs and pizza the rest of the week. We weren't.

Gama could COOK! To this day, I have never tasted (nor been able to replicate) anything even close to the beef barley soup she made. After Thanksgiving, she made turkey soup that actually TASTED like turkey, not "chicken-lite". She also made bread. She baked the most light, delicious white bread from scratch, no matter what the weather. She knew we both loved her soup and bread, and she made it for us on a regular basis all through the summer. Pot roast was her specialty; I still use her recipe. Roast beef, roasted chicken, mashed potatoes, and all kinds of veggies were the types of meals she made for us.

I loved going there with Dad. It was so precious to me, being with Daddy and having Gama fuss over us. She loved the fussing, and we loved being the fuss-ees. Special days, special meals, ......and yet all ordinary meals on ordinary days. It was Gama's love that made it all special.

Rant

Never be indifferent to injustice.
Che Guevara

I am angry.

Not irritated, not annoyed. Think "rage" of Biblical proportions.

I am furious that my family is suffering due to Alzheimer's. I am even more furious that my father is suffering. I am furious that thousands of other families are suffering just as we are.

Life isn't fair. I realize that. My father has lived a long, productive and wonderful life. I've been blessed to have been his daughter, and to have had him with me as long as I have. That doesn't make me any less angry about the situation.

How can it possibly be that we are now in the 21st century and this disease has not been cured? At this moment there are basically only 2 drugs available for treating Alzheimer's, and all they are able to do is try to prolong the quality of life. We are living in the wealthiest, most highly advanced "civilization" in history, and THIS is how we allow our parents to die? Something is very very wrong with the picture.

How is that we have untold amounts of money to spend on "space exploration" (a/k/a sophisticated spying) and not enough to explore the human brain? Are you kidding me? Who sets the damned priorities?

Why is there limitless amounts of funding for a war nobody with an intellect supports, and yet compatatively minuscule amounts allocated to Alzheimer's research? Not only is the war Iraq eating up American tax dollars that could certainly be put to far more productive uses, that little debacle is killing Americans. So is Alzheimer's.

Why are we worried about being "politically correct" with illegal immigrants, and yet my father, a member of "The Greatest Generation", a true American patriot, and one of many who fought in WWII, being allowed to slip away as he is?

Where is the justice? We supposedly have a representative government, yet I honestly feel that none of the thieves and liars who run our nation, from the local to the national level, represent me, my father, nor anyone else affected by this disease. How DARE they waste our money as they do? They fatten their own wallets, and those of their associates, while a major health crisis murders the elders we should be revering. A former president of this great nation recently died of Alzheimer's. His family has spoken out publicly in support of stem-cell research, and yet the radical, religious right-wing conservatives have been allowed to control medical research. Why? How has this happened?

There are other health and social issues that also need to be addressed. I realize that, and I'm pretty damned angry about them as well. However, to me, this is the burning issue: how can we let our parents die without dignity? How can we prolong their lives, and yet do nothing to secure them quality of life? It's completely unacceptable, and I hold our government responsible. Our elected officials have a lot to answer for, and I am demanding answers!

Anybody got one? I'm listening.

Golf

There are two things you can do with your head down
- golf and pray.
Lee Trevino

Daddy has done both for virtually his entire life.

I have no clue as to when he first started golfing, but it was a serious avocation until disability ultimately cheated him out of playing. In fact, he actually hit a hole-in-one when he was 79 years old. That is so amazing to me.

Of course, being Daddy, he couldn't wait to teach his sons to play as well. How old they were when they first held a golf club I don't know, but I'm sure they were very young.

Daddy golfed at every opportunity. He golfed with my mother, with his friends, with his sons -- in general, anyone who was willing and capable of hitting a tiny white ball with a club. When they visited Europe, Daddy brought his golf clubs along. When my parents were looking for a retirement community in Florida, they chose one in a golfing community. The traveled from their home up north down there when the weather got too chilly to golf, and returned when it warmed up enough for them to golf here. Their townhouse there looked out on one of the courses. I think, in many ways, my parents were happiest during that period of their lives. I know Daddy loved living there.

I wish I had learned to golf from him, but I was never an athlete (and I'm still not, Lord knows) I was also a clumsy, myopic kid. Frankly, putt-putt can challenge me! I doubt I would have been any good at it, but I do wish I could have shared his love of the sport with him the way my brothers do. My youngest brother is a dedicated a golfer as Daddy ever was. It's just one more commonality they share. The elder of the two is more casual about the sport, but still he is interested and plays a round every now and again.

There is a picture hanging in my parents' den that I love. It is a photograph of my Dad, flanked by my brothers, all holding clubs. I believe the photo was taken by my brother-in-law, but on what golf course I just don't know. What I do know is that not only is it a technically great photo, it demonstrates beautifully the love that these three men share: love of a game, and love for each other.

Golf is one more thing that Alzheimer's has stolen from Daddy. He never mentions golfing at all, in any context, and takes almost no interest in even watching a tournament on TV these days. The cruelty of it all is virtually unthinkable.

Gramps

There is no grandfather who does not adore his grandson.

Victor Hugo

Of the 5 of us, 3 have been married. Only my older sister had a child, my nephew. He is now a grown man, married to a woman the whole family adores.

He, too, has so much of my father in him. The single characteristic that strikes me most is his devotion to his family. He deeply cherishes not only our branch of his family tree, but all the members of his blended family -- sisters and brother that are steps- and halves- and a variety of aunts, uncles, and so on.

On his own, he chose the names "Grams" and "Gramps" for my parents, names that I find incredibly endearing. He is, and has always has been, completely cherished by my Mom and Dad. Not that the rest are slackers in the love-and-devotion department when it comes to him, but to Mom and Dad........I can't really explain how much he means to them.

I personally enjoyed watching my parents interact with him when he was a child. The unconditional love, the nurturing, and the spoiling they lavished on him reminded me of my own grandparents. As an adult, their pride in him is boundless.

He has grown into a man to be proud of. He recently drove many hours from his home to help celebrate my mother's 80th birthday. I am sure it never occurred to him not to come. That's only one small example of his devotion. He and his wife are with us, at least for a while, for virtually every holiday, large or small.

He also has my father's gentleness and kindness of spirit. I watch him now, as he witnesses his Gramps' inexorable decline and can only imagine the pain it causes him. He is tender with both of them, and it fills my heart to see the love he feels expressed so sweetly.

Being blessed enough to have him as a part of our family makes me so thankful. Through him, my Daddy and his Gramps will never disappear.

Dance With Me

To watch us dance is to hear our hearts speak.
Hopi Indian Saying

I always loved dancing with my father.

I went to an all-female high school. In my Junior year we had a "Pop Hop", which was a dance for the girls and their fathers. Mom made me a pretty green velvet dress to wear for the occasion. My father was actually the "king" of the affair. I remember standing on the stage in the high school auditorium and crowning him with a cardboard-and tinfoil crown. It was a wonderful night.

Dancing with Daddy at my wedding was almost as emotional and precious to me as when he walked me down the aisle. The marriage has died, but the tenderness of the moments live on.

When my nephew got married a few years ago, I danced with my father. I tried desperately to enjoy every moment, but I knew that I would never be able to dance with my Dad again.

Alzheimer's and disability has stolen dancing with Daddy from me. It enrages me, and breaks my heart.

Sons & Daughters, Sisters & Brothers

We are linked by blood, and blood is memory without language.
Joyce Carol Oates

I have been looking at old family pictures and thinking about my siblings and my father. It occurred to me that they are all like him, in various ways. I'm still wrapping my mind around the "nature/nurture" part of it, but for what it is worth, here is just a bit of what I've noticed.

My older sister has his patience and gentleness of spirit, and his willingness to sacrifice her comfort for the greater good.

My younger sister has his faith and his volunteerism. She also has Dad's auburn hair and sense of humor. Her devotion to the family is limitless.

The elder of my brothers has his love of the water, although my brother is more of a fisherman than a swimmer/boater/water skier. They both absolutely love practical jokes. The one my brother pulled on Mom last summer with a Ziploc bag was a classic.

And my youngest brother? Lord, he is most like Daddy of all. Physically they are identical, and in pictures of them as children you would be hard-pressed to determine who is who. He has quietly "manned-up" and become, in many ways, the father. He automatically takes up the burdens that cross his path, and shoulders them quietly as Daddy always did. He also has that same sense of humor, although it has burned less brightly over the past few years, as the stresses of life bear down on him.

As for me, I am the one they found in the cabbage patch........

The Eye of The Storm

The human heart is like a ship on a stormy sea
driven about by winds blowing from all four corners of heaven.
-Martin Luther

Friday was my day off, and I spent it with my parents. Mom had cataract surgery on Thursday. My older sister cared for them Thursday, Friday was my turn.

When did it happen to us that the children became the caretakers? It's an insidious thing, this situation. It started creeping in as slowly and quietly as the fog at the harbor, but gradually it has built and thickened and deepened. Nothing looks familiar anymore, and we are finding it hard to make our way.

I watched my mother nap for the first time on Friday. That may seem like a small thing, but for a woman who has always been a dynamo it is a big event. She's 80 years old, and she's tired. She's too tired to fight it off, and is yielding to it. It scares me to realize that she is old now, and her body is slowing down.

And Daddy? Poor Daddy. He was having a bad day. He was very confused all day, and wasn't sure who was there and who wasn't. My sister had slept there the night before, and he didn't understand why I was leaving to go somewhere else to sleep that night.

He's losing his verbal/cognitive abilities slowly but surely. He was reading the paper, picking the ponies the way he always does, and came to a word he didn't know. He didn't gloss it over, instead he said "I see this word, but I think it's wrong. POE-LEET doesn't sound right to me." The word was "polite". Later that day, he saw my mother's medicine on the kitchen counter, and he couldn't retrieve the word "medicine". He knew what it was, and what it did, but he didn't have the ability to find the identifying noun to correspond to the object. That is sad enough in and of itself; that he has been a pharmacist all his life makes it heart-rending.

As his brain is failing him, so too is his body. He is terribly frail these days. His legs are in very bad shape from spinal neuropathy. He uses a walker, but he can't remember how to use it correctly. He moves slowly and cautiously now. He has stopped wearing a belt because it makes bathroom visits more difficult for him. He is so thin and fragile that he has trouble keeping his pants up, and Mom had to help him with that. She also had to help him change his pants in the middle of the day, after he had some difficulty in the bathroom. He sleeps a lot now, slipping in and out of naps all day long.

There were rays of sunshine as well. Mom is trying to divest herself of excess baggage, so she is having all of us look through old pictures and take the ones we want. We all enjoyed it, and laughed a bit. It was so touching to see pictures of my siblings as the children we once were, and to be reminded of the happy times we spent together. Yet again, this was a two-edged sword: when we were young, so were our parents. There were also pictures of family members and other loved ones who have passed on, and seeing those was bittersweet.

Mom let me prepare, cook, and clean up from lunch and dinner. I was amazed that she actually yielded control over even something so mundane. Not much of a yielder, our Mom. I purposely cooked too much food, so that there would be sufficient leftovers for Saturday and she only nagged me a tiny bit. I get my control issues from nowhere strange, that's for sure!

I saw sparks of Daddy appear in a flash, with a silly face or funny line. This man who has made me laugh for over 50 years is still able to make me smile at his purposeful goofiness. It was good for all three of us.

Sometimes I feel like Miranda, tossed about in The Tempest that throws me up in an unknown land. Career, divorce, money, health--all these are part of the storm that has become my life, but it is crashing on the rocks of Alzheimer's that is tearing me apart the most. So I put on my big-girl panties and snap out of it, and continue to do what needs to be done to the best of my ability. That's a lesson I learned from both of them.

Then, I come here and cry alone.

My Heroes Have Always Been Women

If I have to, I can do anything.

I am strong, I am invincible, I am Woman.

-Helen Reddy

I became a strong woman because I come from a family of strong women. Grandmothers, mother, sisters, and friends: each a warrior in her own right, each a hero to me.

My mother.......where does the strength come from? How has she managed to live her life for 80 years, do it well, and made it look easy? How does she have the courage to face another day?

She is truly a warrior queen, the goddess Brigid for my life. Her intellect and will have carried her through the ups and downs of life, and she has never faltered. She has risen above hardships that would have vanquished a lesser person. The feat that she achieved of raising all five of us and not crumbling beneath the weight astonishes me. We certainly weren't the Brady Bunch.

Now she stands as strong as ever as she cares for my dying father. She cares for him 24/7 with virtually no relief. Yes, she gets sharp with him at times. She loses her patience repeating things endlessly. It hurts me to hear, but I understand where it comes from. It is her gentleness with him that breaks my heart.

She is so tender and nurturing, so loving and protective of him! She never sleeps a full night through, because she listens for him waking. She calms his fears, and comforts him with love that has lasted 60 years. She cares for him like a hen with one chick, doing anything he needs done, and never complaining. She pushes aside her own health issues, because he is more important. He is fearful and anxious when she is out of his sight, so she chooses to stay by his side every moment she can. She does it all with little help: we, her children, all do our best for them, but it isn't enough. It could never be enough. She has finally consented to have someone come in to sit with him while goes to Mass on Sunday and does her food shopping on Thursday. She also has someone come stay on the very rare occasion she goes out for some reason. She refuses to have any home health aide come in, which drives us all insane. We all know that this is misplaced strength and pride, but we also know we are not about to change her mind.

When I am with them, I invariably leave in tears. The sadness overwhelms me, and I can't cope. Thinking about it now I am crying. How does she have the fortitude to carry on, day after day, watching the man she loves fade away bit by bit?

I fought with her for years, for many reasons (all of them stupid) yet she never stopped loving me. I see her now so differently. She amazes me. She awes me. I hope to someday to become even half the woman she is. She is my hero.