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The Romick family, long before anyone thought of Alzheimer’s.

August 11, 2012 — So much has been written about family participation in helping with an Alzheimer’spatient. From what I have read the percentage of those willing to help and those willing to watch is way out of balance. I don’t have the statistics; furthermore I doubt there are any truly accurate stats because involvement in caregiving is such a personal family issue. However, I would venture to say that the numbers

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My granddaughter Katie and her new husband Brian

July 20, 2012 — Alzheimer’s is a prison for the victim and often for the caregiver. As caregivers, especially those of us who care for our loved one at home, we struggle against the confinement. Keeping our head above water in the never-ending stream of responsibilities and duties we must fight diligently to give ourselves the needed breaks we not only deserve, but desperately need. I periodically write about “breaks” for

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Showers can be difficult for Alzheimer’s caregivers.

SHOWER: I CAN DO IT MYSELF

July 27, 2012 — Today was a good day with Ken even though Alzheimer’s has taken him very deep into self. I have often wondered about the deep dark pit of self and what parts of personality might be fragmented in this lonely place. I wonder if it’s terribly crowded there because every so often a glimmer of self slips out and pays us a brief visit. Identifiable only that it was Ken.

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With my soapbox still intact I do have one more annoyance regarding Alzheimer’s information.  It appears that every other magazine or TV talk show guest has a theory for avoiding Alzheimer’s.  It’s as simple, it would appear, as the common cold, and “They” know the answer.

Who are “They?” For years I have wondered that. “They” seem to be everywhere and know everything; so much so that I’ve given them a proper status with a capital T. You’ve heard the references a zillion times: “They” say…., “They” are showing…., “They” know for sure…., “They” seem to be right. “They” set the fashion and home trends.  “They” tell you what colors to use, what sofa to buy, window covers which are the latest, what’s in or out, cold or bold, and what’s hot or not.  “They” have become so prevalent in our society, so controlling, so self-serving, and “so the last word in just about everything” it’s difficult to make a competent move without looking for their input. “They” even dabble in how to live a healthy life and how to prevent Alzheimer’s with numerous magazine and newspapers articles using, if available, some reputable references.       

In the medical field, though, the “Theys” seem to have lost some influence.  “They” have, however, passed on their clout using other pseudo names such as “Others” and “Studies.”  “Others agree” or “Studies show” or even “Studies prove” appears to carry more authority as to input or conclusion even though vagueness still prevails.  And we mustn’t forget “According” to.  Often the mysterious four appear in articles written by doctors with impressive degrees and in good standing, or pharmaceutical companies, who are also impressive and acceptable compared to the unidentifiable, common underling “They.”  Yet, even though what is presented brings hope to the reader, or viewer/listener, the information remains without a proven conclusion.  And, more often than not the statement is salted with what a former English teacher referred to as glittering generalities.

For example, on a slow news day you might hear that “studies show an Alzheimer’s breakthrough is right around the corner.”  “Studies prove that a good exercise regimen can prevent Alzheimer’s.”  “A healthy diet prevents Alzheimer’s.”  Generalizations I can deal with, it’s the absence of a disclaimer such as may or might that I find disturbing, because nothing is certain even though the healthy ideas offered are worth considering for everyone.  What is interesting about disclaimers such as may, might, possibly or perhaps is that several years ago when some of these health suggestions were becoming popular they did use the disclaimers.  Why not now when solutions are still no where in sight.

Today, Dr. Oz is going to be my fall guy.  Mind you, I love Dr. Oz and watch his program as often as I can.  Way back when he was a weekly guest on ABC’s “The Oprah Show” I seldom missed his day.  Wearing purple gloves and scrubs he was the absolute expert: smart, entertaining, cute, personable – cleaning out refrigerators for willing viewers he usually left a near-empty white box in the kitchen and the homemaker was delighted.  The good doctor proved his point and got folk’s attention: we need to eat a healthier diet.  For us “lay people” he was right on target, even updating us on any late news about Alzheimer’s.   In many ways, especially promoting a healthy diet, he is absolutely right, but he is not right about broccoli preventing Alzheimer’s.

Reading his column in the February 2010 issue of “O” magazine he wrote that eating broccoli prevented Alzheimer’s.  That’s what I found annoying and not true.  No one ate more broccoli than Ken and I did – do.  It being one of our favorite vegetables we consume the little green trees year round (prepared in many ways) and we enjoyed it long before our children tagged it “little green trees.”  Yet Ken is nearing the last stages of the disease. If the article had included “broccoli may prevent AD” I would have had no objections.  Who knows, possibly Ken’s consumption of broccoli may have delayed the disease. But without a disclaimer it appears to be a fact– which it is not.  I haven’t heard of any vegetable, including broccoli, being used in any clinical trials.

Perhaps someday, “studies” will prove, or “others” will have found, or far off in the future we may find that even the illusive “They” have evidenc that broccoli – and wouldn’t that be ironic — might be the secret ingredient to a successful cure.  Meanwhile, and trust me on this, broccoli, delicious and good for you though it is, doesn’t prevent anything — and that’s “according to” my very many and long years of experience with Alzheimer’s.

Like a road leading to nowhere, help for Alzheimer's research is like a long road leading nowhere.

Government help for Alzheimer's sometimes seems as pointless as a long road to no where.

A good while back I read an article which gave some hope to a timeline when the puzzlements of Alzheimer’s might be solved or at least the disease would be effectively treated.  Granted, five years ago it wasn’t a promise and I don’t even recall where I read it.  However, the writers implied that some kind of breakthrough could be expected within 10 years – right around the corner – I thought. Since then I’ve read a zillion more articles and plea letters, but without any time frame.  While I knew that even 10 years for Ken would be too late, that ray of light gave hope to the Baby Boomer generation and my family.  2016 wasn’t all that far away.

Recently, we have a report from the special committee representing the National Alzheimer’s Project Act, NAPA, titled “Draft Framework of the National Plan to Address Alzheimer’s Disease.” What?  How many steps back was that?  Victory was the cry from Washington and applause was heard from the Alzheimer’s Association. It has not been well received by the Alzheimer’s Community and has raised the ire of many. A two and a half page comment by blogger Richard Taylor and posted on The Alzheimer’s Reading Room mentioned that this committee report was nothing more than a draft of a plan to plan to write a plan, and paraphrased a Woody Allan quote, “Life can be awful.  Now it has gotten worse!”

Apparently it boils down to more wasted time and money with no real plans to get to the problem which for loved ones and victims is AD.  But then what do bureaucrats do best?  Waste.  Not to mention the draft to plan to plan to plan took one year to compile.  Next report (plan) is promised in May.  Hasn’t anyone reminded Washington that the camel was designed by a committee?  If the camel with one hump isn’t strange enough, it took two committees to design the camel with two humps.

When we moved into our community many years ago the city and county officials ordered a study costing a good lump of money to find the most troublesome intersection in town.  My question and answer at the time was, “Why a study?  Just ask me, I’ve been there.”

Thirty years later it’s still our most troublesome intersection, but they’re working on it.  Sound familiar?

NAPA did arrive at five goals:

  1. Prevent and Effectively Treat Alzheimer’s Disease by 2025
  2. Optimize Care Quality and Efficiency
  3. Expand Patient and Family Support
  4. Enhance Public Awareness and Engagement
  5. Track Progress and Drive Improvement

The only one that’s truly important and makes sense is No. 1, but how about cutting off five to seven years.  The others are just gobbledygook.

No. 2.  Optimize Care Quality and Efficiency.  Really?  Authorities can’t even keep up quality control and efficiency with the existing care facilities.

Looking at No. 3: my friend cares for her AD mother whose disease is somewhere between mild and moderate.  Cherrie tells me funding was cut for the Dementia Day Care where she had been taking mom two days a week for the past few years.  Mom no longer gets to go. That’s not expansion.

Enhance Public Awareness.  I believe the public is very aware of Alzheimer’s and its destruction.  Are they going to have Engagement police to force involvement?  Engagement often referred to as volunteering will always be a matter of choice.

What is No. 5?  Why does Government have to Track Progress using up valuable dollars which could be better used for research?  Researchers issue their own reports on progress, success and failure.  Does Drive Improvement mean nag?  Who?

It has been said that funding from Medicare and Medicaid will be cut to help fund Obamacare.  If this is so, where is government getting the money for NAPA?

No, I don’t have answers for any of the above, or for the 10 million people with Alzheimer’s including my husband, my now-deceased father and mother-in-law, and my own mother also deceased, but I do know that changing the title from “The Dementia Crisis” to “The Alzheimer’s Crisis” won’t even put a finger in the dike, nor will four out of NAPA’s five goals.  Does all the hoop-la about the name change and the forthcoming plan imply that all of our public health problems under the microscope of Health and Human Services could be solved if only AD went away?

The Dementia Umbrella, with all of its brain altering diseases which includes Alzheimer’s, is what’s in crisis and all of those many victims are slowly slipping away; dying twice.  Does the title The Alzheimer’s Crisis mean to ignore all of the others, or is it because AD has skyrocketed to the No. 2 most-feared disease next to heart disease?

We already know there is urgency in finding at least a viable and enduring treatment without sacrificing precious funding foolishly spent on endless study plans, discussions and hyperbole. We, who have lived/live with AD, like our city’s bad intersection, have been there. No longer strangers to the disease, it’s been a part of our lives for years and we don’t need to waste any more money on these silly committees, paper-shuffling studies, or congressional members who stand around pontificating, pondering and shaking hands with one another for what they believe is a job well done.  We need the money to go into research and, perhaps, some help for those who are draining their life savings caring for an AD loved one.  The Dementia Umbrella is filled with catastrophic illnesses and they are world-wide problems with Alzheimer’s as No. 1.  Just fix it.

I SEE THE MOON. DOES KEN?

Full winter moon peeks through bare branches

Do people with Alzheimer's remember nature?

I watch the moon on these crisp and clear winter nights as it wanes and waxes just as I have watched it during all of the seasons.  For me, though, it is most beautiful during the fall when it appears to be closer to the earth than at any other time.  In reality it isn’t, it just looks that way.

The Harvest Moon as they refer to its splendor is almost frightening when it’s full, appearing bigger than life, as it peeks up over the hills east from where we live.  For years, at first sighting whether by me or Ken one would nudge the other excitedly saying, “Oh, look at the moon.  It’s so magnificent!”  It was as though if we didn’t stop what we were doing and look right then and there the other would miss it all together – as if neither of us had ever seen the moon before.

It’s understandable why the ancients of long ago were frightened of what they saw in the skies; why they had moon gods and superstitions, worshipping and fearing what they could not comprehend.  The moon itself with its many changes would be awesome enough, but imagine what terror was evoked when something unknown changed the appearance of their moon.

Ken and I have property in the foothills of the Sierra Nevada Mountains where we were able to spend some wonderful times several years ago before Alzheimer’s spread its destruction across his brain.  A lunar eclipse had been announced, but because of fog we wouldn’t be able to see it in the San Francisco Bay Area.  Not to matter, we had already planned to spend those days on the property and looked forward to the heavenly show.

Taking our folding chairs and flashlights from the trailer we walked up to the top of the hill as darkness fell and the telling hour approached.  Facing eastward we waited longer than we had expected to see some sign of the moon.  Nothing was happening.  Had the fog followed us to the foothills?  Looking straight up, directly overhead, we found the heavens filled with bright, sparkling stars and yet there was no moon.  Had the universe canceled the show?  Finally common sense prevailed and we stood up and moved to the right of where we had been sitting.  There it was in all of its celestial glory: the lunar eclipse.  Much to our chagrin we had been sitting behind a tree – a distant tree – but a tree nonetheless that reached skyward into the blackness just enough to block our vision.

“Wow!” was the word, spectacular beyond description.  We had lived so many years under hazy skies and city lights such sights had long eluded us.  We spoke of the Indians who had lived here so many years before and wondered what they thought of such a phenomenal happening.   It would have been beyond frightening without knowledge, and having only mystical beliefs they could know little of their moon-god and that Mother Earth could produce a shadow.

I wonder if it would frighten Ken if he saw an eclipse tonight, or is his thinking so far gone that even the moon itself is unknown to him. I wonder if he remembers the sun or the stars, the heavens or the universe.  Does he grasp feeling heat or cold, light or darkness – even day or night? Would he know of things once held dear to his heart: the ocean’s roar, the cry of a gull, the wind coming in from the sea, the feel of damp sand beneath his bare feet or the wetness of a lacy edged wave spilling over his toes?  I wonder if he remembers our four seasons with the moon.

It was under a spring moon that we met, falling in love among the stars and moon on balmy summer nights, a solitaire diamond offered in the brilliance of fall’s golden moon, and we married as winter’s pale moon slipped away behind storm-leaden clouds.

We looked out from our window into a gray dawn watching the rain and wind banter with the last few leaves hanging on skeletal trees in a nearby grove, and I thought of my new husband while promising me, “I’ll remember you in winter.”  And now I look up at the soft moon remembering him – us — January. Perhaps, somewhere deep in Ken’s lost mind and crippled neurons a memory flickers – and then again — perhaps not — but more importantly I want him to know deep in his soul that he knew love and is loved — still.  Happy Anniversary Ken.  January 21.

Janus

Even without the two faces of Janus, AD caregivers often see their tomorrows filled with the repetition of their yesterdays.

It’s January again and at times I want to ask, “Didn’t we just do January?” The answer coming back would be, “No.  That was last year and 11 months have transpired in between.”  I really know that, but there was something about that first day of 2012 which brings about thoughts of Janus the Roman God of New Beginnings after whom the month was named.  Being who he was it is said that he had two faces: one looking forward and the other looking back.  While Janus probably didn’t have my caregiving assignment, or if he did he never mentioned it, I see a disheartening sameness in my life while looking in either direction.

Being able to look back is a good thing, and in that respect we are much like the mystical god, but better because we who are mentally healthy can look back without needing a second face.  We have memory and can learn from history – especially our own.  We learn from making mistakes, taking wrong turns in the road, and what works and what doesn’t.  Furthermore, we can look ahead making daily plans, and plan for the future. My problem is constantly seeing more of the same thing coming in my tomorrows as filled my yesterdays.

Suppose that by looking back and ahead we see only repetition.  I guess that’s where I was as this New Year began; living in “Groundhog Day” – the movie – without the romance.  Bill Murray’s character Phil, an angry, arrogant, conceited jerk, had to keep repeating February 2, until his attitude changed, or until he got it right.  Andie Macdowell’s Rita, the love interest, eventually helped him through his maze of repetition producing a new, reformed and lovable Phil; a delightfully funny movie which Ken and I enjoyed together long before his Alzheimer’s was even suspected.

Remembering the movie, though, I found I was identifying with Phil’s frustration of constant repetition – without the laughs.  It’s true that I’m not tied to a stockade then released to perform certain duties, but it is the repetition of those twice-daily duties from which there is no escape: getting Ken up, cleaned and ready for breakfast each morning, and getting him cleaned and ready for bed in the evening.  (It is much more complicated and emotionally wrenching than it appears in my simple sentence, but long ago I promised myself to always be discreet in my writings about my husband.)

My caregivers, wonderful though they are, cannot do these chores alone.  I am their assistant, and I know I am blessed beyond measure to have them.  I also know that having Ken home is so much better for him, and me, than placing him in a care facility. Yet, the schedule inhibits my planning a totally free day.  No matter what I’m doing I must stop at designated times and with my cell phone in a pocket I’m always on call for undesignated times, which can put a damper on my project regardless if it’s at a crucial point or not, and help the caregivers.  That’s when I feel as if I’m living in “Groundhog Day” – the movie.

Admitting to me that I dread the routine I also recognize that the dread causes a buildup of resistance in planning my day.  Recognition is a first step.  While I understand that the day will be interrupted, it’s the accepting of the interruption that is difficult – and I ask myself – why?  After all, once involved in any project we can be interrupted in anything we do; altering our focus by a phone call, a visitor, a question, or a problem with the project itself.  Then I realized those interruptions are, not only easily accepted, but often welcomed as a mini-break because they were never built into the day’s plan as a constant, as is my husband’s clean-up time.

When Ken retired we became very spontaneous, often ditching less-important, flexible plans for some fun times spent together.  I suppose that loss of spontaneity is rather debilitating adding to the lack-luster feeling of sameness.  Actually, it can be rather hellish when time offers us no opportunity for change in our life; little variety,  few surprises, no rewards, no excitement and not much in the way of looking forward.

With that in mind, and as a caregiver who has been putting break time on hold during the past Holidays, I need to move headlong into the tomorrows and make positive plans for this coming year, and I’m the only one who can do it.  Not resolutions, just plans, even sketchy plans including projects and fun, but in the doing I’ll still need to schedule those time periods to accommodate my daily duties as assistant to Ben and Crizaldo which is a must, and learn to conquer my feelings of dread and resistance.  A recent email message offered a really great motivational shove: “Life has no remote.  Get up and change it yourself.”

It is essential for my own well-being to get out more with my movie group, my lunch group, and with Madalyn where we meet at Wendy’s for a baked potato with extra sour cream, butter and no salt because periodically we deserve a two-hour, carefree lunch.  I might even plan on painting the living room.

I know I don’t have all the answers to lighten up the tedious work of caregiving and the reality of losing my husband to this cruel disease.  What I do know is that I don’t want to live my life in the sameness of “Groundhog Day” – the movie – no matter how funny it was — because even never-ending funny without any hope for change can be hellish.

Photo courtesy of http://www.flickr.com/photos/forresto/4258770494/