MEETING DOTTY AND COMPARING

I met Dotty last week.  Dorothy is the mother of Bob DeMarco, writer and editor of The Alzheimer’s Reading Room, and his topics appear to be endless.  To cover all the bases he is a prolific writer, sometimes invites guest bloggers to contribute, quotes from many sources, and all in all probably supplies the best variety (including professional articles from medical people) of AD information on the internet.  Bob has written 1,810 articles while caring for his 94-year-old mother who has been a victim of AD for approximately seven years.  Bob is devoted to her.  He is also striving to be the best caregiver possible.

Dotty met her admirers through a short video Bob made for the Reading Room.  I was impressed.  Ken having been diagnosed with Alzheimer’s about the same year as Dotty, I expected them to be comparatively close in their journey.  I do have to admit that Dotty is ten years older than Ken which makes a tremendous difference in their physical condition.  While Dotty appears to get around with “hurtful knees,” Ken still has good upper body strength, but does have a little trouble keeping his balance and when he walks there is some shuffling.

What did impress me with Dotty was her ability to carry on a comparatively good conversation with Bob.  In the video Bob spoke of ice cream.  She knew about ice cream, appeared to remember ice cream, and when it was offered expressed excitement in getting some.

Ice cream is Ken’s favorite dessert.  My freezer is never without it.  Before his illness I could count on him going to the garage and bringing in a container.  He wasn’t content to get a bowl and serve himself a helping; rather he would sit down and eat from the carton.  Even though it was just the two of us, I felt annoyed at this somewhat inconsiderate practice.  “Don’t worry,” he would counsel, “in a few days I will have eaten the whole thing leaving no germs for anyone else.”  Then he would laugh knowing I didn’t approve, nor did I have a snappy comeback except maybe, “Oink, oink.”

When I serve him ice cream now, I have to tell him it’s ice cream.  He takes a bite and says, “This is good.”  However, he never says, “I would like some more ice cream,” or “May I have some ice cream.”  He no longer remembers the name of his favorite dessert or that he even had one.

I also listened to a recording of “Dotty in the morning.”  She is conversational; touching on the weather, the day, her knees hurting, and even sends a verbal jib to Bob in a form resembling sarcasm.  She was also a little cranky, which is permissible at 94.

I suppose what I am doing here is making a comparison.  Even though there is that age thing, both Dotty and Ken have had AD for approximately seven years.  I also suppose it’s a natural thing to do when there is a similarity in a problem; in this case an illness.  I once asked my good friend Madalyn a few “when” questions.  Kindly, she said, “Everyone is different.”  Even though I am convinced of that I found it interesting to do a little comparing with Dotty and Ken, concluding that Ken’s disease has ravaged his brain much more than AD has ravaged Dotty’s.

Within our immediate families we have Ken’s mom and dad, his sister, my mom and Ken, that’s five.  Outside of our immediate family, and still counting, we have close friends and cousins who have been stricken with AD and the list is growing.

Still my search for answers continues.  With each dear person I tend to make comparisons – as I have done with Dotty – and as I compare I am filled with more questions.  Uppermost being (which has no answer), what is it that allows the disease to ravage some victims very quickly, and others more slowly?  The following are other questions always on my mind:

1,  Is there recognition?  Their children?  Spouse?  Brothers and Sisters?  Friends?

2.  Can they still carry on a conversation?  How far into AD did they lose that ability to communicate in what might be considered a normal conversation?

3.  Are they combative?  If so when in their AD did it begin?

4.  Are men more combative than women, or is it an individual thing?

5.  Can they still feed themselves?

6.  Can they attend to their private needs?  If not when was the change noticed?

7.  How long does AD last?  (I know that answer from the people at Alzheimer’s Research.)  Victims can live with AD for 20 years or more.

8.  After watching and listening to Dotty I could ask, “Why is Dotty able to communicate better than Ken even though their time frame is similar?”

Another case in point is Loretta, Ken’s older sister.  They are very much alike in their digression, although she was stricken a few years before Ken.  Their decline has had a separation of about three years which is their age difference, making it all the more interesting.  I have often said that because this sister and brother are so much alike they could have been twins – identical twins – which is impossible.  Still, I have always called them two peas in a pod.  So much alike during their lifetimes, and also is their AD journey.

Both of their symptoms resemble those of their father, Nick, rather than the symptoms we noticed about their mother.  During his AD illness, Ken’s father was stubborn, angry and I believe could have been combative, but we don’t know.  His mother was meek, submissive and depressed during her husband’s illness.  In private care, with her own AD she continued being meek, submissive and depressed, but she was also grateful, friendly and kind.

My own mother regressed back to a little girl.  I watched her lose memory of my sisters and me (she knew I was someone, but didn’t know who).  At one point she though of herself as a young adult wanting to meet people her own age so she could get married and raise a family.  She even asked my father if he could introduce her to other young people in the community.  Continuing to regress, she became a little girl who believed I was her mother saying one day, after spending hours with me in the car, “I was with my mother all afternoon.”

People have said to me that Alzheimer’s is an interesting and fascinating disease.  Then they apologize because of their supposed lack of sensitivity.  “Don’t apologize,” I answer, “I thoroughly agree.”  Although I am completely immersed in the caregiving aspect of the disease, and feel downhearted at times, I also find AD fascinating.  I suppose that’s why I am so curious and plagued for answers.  I will continue to search and compare Ken with other AD victims in my own quiet way.  Perhaps it will help me gain more understanding about my assignment as a caregiver.  Like Bob, I would like to be the best I can be.  I do know that reading of others who share in this journey helps me to cope.

Meanwhile, I hope to become a more compassionate, caring and empathetic person — and caregiver.  Nevertheless, as I search for answers I must remember the sage words from Madalyn and accept the fact that “everyone is different,” including Ken and Dotty.

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TRADITION REVISITED

Is it Thanksgiving that kicks off the Holiday Season, or is it Halloween?  While the “they” forces are debating the question I’ll take a quick sentimental journey back to my own childhood remembering Christmas decorations lurking on the high shelves of our local “5 and 10 Cents” stores waiting for the Halloween masks and costumes to disappear.  No different from merchants of today, they couldn’t wait to push an early start for Santa’s helpers to swing into action.  My sister Janet and I used to ask one another, “What happened to Thanksgiving?”  Even at 9 and 12 we were aware that every holiday had its own tradition, and it wasn’t Christmas, but Turkey Day that arrived in November.   In school we had learned of the pilgrims sharing their harvest with the local Indians and giving thanks to the Almighty.  Nice beginning.   America’s first Thanksgiving has long since been tradition, and we continue to celebrate as the first gusts of cold air remind us that winter (and Christmas) is, indeed, on its way, but first let’s have our day of gratitude.

When we were children both Ken and I spent Thanksgiving day with family — not friends — family; unless the friends joined us for dinner.  As youngsters we were yet to meet, but family traditions were pretty much the same.  Dinner was either at home, or everyone gathered at someone else’s house; that house belonging to anyone on the long list of the aunts and uncles.

After we were married we continued to share with one another the Thanksgiving traditions of our parents, aunts and uncles. It was a little more difficult because we now had his family and my family from which to choose.  It was also noticed that our cousins were  growing up, getting married and having children, as were we.   With so many invitations and so many relatives, the older generation soon realized that traditions needed to change — not disappear — just become less rigid,  less cumbersome, evolving — even morphing — into a family solidarity of  love  and genuine affection for one another — which they did —  all the while respecting the new chosen Thanksgiving traditions of the younger generation.

We settled on Grandmother’s house – either one.  When Ken’s parents, Rose and Nick, began to have health problems we brought our brood, their brood and Rose and Nick, health permitting, to the home of my parents; a country setting located in Northern California’s Sonoma County.  For years my personal tradition was to arrive on Monday to help my mother prepare; making pies, cooking ahead and cleaning – getting ready for family on Turkey Day.

It was during dinner that last year when I noticed my mother seemed to be talking endlessly about not much of anything.  Her dinner plate was untouched as she droned on and on until my father said, “Irene will you stop talking and eat your dinner.”   She paused, took a few bites and began her filibuster once again.  I had noticed her being inattentive the previous three days, losing concentration and not listening.   Later, much later, we realized she was slipping away into Alzheimer’s.

Nick and Rose had already journeyed into the disease.  It was more than 35 years ago when doctors weren’t even certain what was wrong;  “Just old age,” was the usual diagnosis, “or senility – maybe dementia.”  The medical community groped and we did too.  Uncertain about what to do, we did the best we knew finally placing them in full care facilities when we could no longer cope.

My parents moved back to the Bay Area to be near us so we could supervise and be a part of their care, and life continued.  So did tradition, but once again a new one:  Thanksgiving dinner was at our house just as I had promised Mama.

Years before when I could see my mother was growing tired, not so much because of the work involved with family gatherings, but more of the house being filled with company; the laughter and chatter of adults, the clamor and joyful sounds of children, the cry of a new baby seemed to tire her.  Interesting, no matter how much we might love family and parties there comes a time when a little peace and quiet is better.  My parents were ready for love and devotion to be served in small portions.  I suppose we can compare the often overwhelming joy of family to a lifetime of being stuffed with Thanksgiving dinners – some better than others – but appreciated none the less.  When age finally dictates after such a life-long feast, and we are filled to the brim, all that is wanted is a very thin slice of pumpkin pie.  I understood what she meant; enough was enough.

Nevertheless, she worried about letting go of the reins of her tradition, “If I don’t have the family come to our home, then where would they go?”  Smiling a sad smile I reassured her, “Then they will come to my house, and when I’m not able someone else will have the family Thanksgiving at their home.  There will always be someone to hold it together because family tradition is so precious.  Just let me know when you and dad are ready to let it go.  I’ll be there.”

We took photos after dinner that year: family photos, group photos, candid photos, couples photos and Mom and Dad photos.  With everyone being in a jovial mood, Dad made the announcement, “This is the last Thanksgiving here at the farm.  Mama just isn’t up to it any longer.”  The invisible baton of tradition was handed to me and for all of these years I have held it close.  It has changed, been reshaped, gotten smaller – and larger – depending on the number of guests.  The door of Ken’s and my home swings wide, and there was/is always  room for one more.

Since Ken’s AD Thanksgiving is always the holiday which hangs precariously in limbo until November.  By then I know whether we can do it one more time — or not.  In October we had a small family gathering.  Ken was very good.  Somewhere in his damaged mind there remains a spark of social.  He did so well that evening I decided yes; we would have Thankgiving dinner at our house once again.  Our daughter Julie and her daughter-in-law Marisol did the cooking last year, and what a wonderful gift it was.  This year I will have Ben to help when he isn’t watching Ken, and those coming will all bring a dish of something fabulous for the table, as usual.  What a bounty of blessings abides in my home.  I am forever filled with gratitude.

Last Thanksgiving I wrote about “Fiddler On The Roof,” Tevya and his ever-changing tradition and reluctantly accepting what he could not change when his daughters began their own traditions.  I see my battered baton fragmenting as did Tevya’s; bits and pieces scattering in many directions as members of our family move to various locations throughout our great land, but that’s okay even though we will miss them.   I think of tradition as a lighted candle –  like love.  It’s by sharing, giving it away,  allowing it to spread that  it becomes bigger, better and brighter.

Following the “tradition” of Tevya and his humble friends I decided last year to place a metaphoric fiddler on my roof as a reminder that in spite of the adversities we all have, life is good.  As far as I know my fiddler remains.  Listen, once again I do believe I hear the lilting strains of music.

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