I Have This Terminal Disease,
It Moves So Slow It Is Killing Me!
One of 25 Best Alzheimer’s Blogs of 2012
Mike Donohue is a brave man. Courageous, direct, and bold, his blog energizes readers with a passion for action. Dementia Endured gives a hint in the title as to the nature of this talented writer: he will endure. And with a personality like Mike’s, it’s easy to believe that he shall overcome, as well!
His life experiences are opened to the reader, and his journey recovering from alcoholism to adjusting to Alzheimer’s holds its own fascination for visitors to his site. Mike’s strength and determination will remind readers that dementias are one area in which it’s best not to hold any punches.
Saturday, May 30, 2009
MY JOURNEY IN LIFE
I was raised a Catholic. Educated in a wonderful belief system that Catholicism is. I continued to immerse myself in the study of it. My studies led me to Judaism which I embraced in mid-life.
When confronted with a diagnosis of Alzheimer’s disease (AD) continuing with my penchant to study, I tried to understand the consequences of my having this disease. This guided me to the study of Buddhism. Embracing the mind set and the practices of the Way of Buddhism I was enabled to deal with my diagnosis in a far better way. I am not a religious Buddhist although I do follow the Way. As such I remain a Jew.
This Part II of this four part series of essays about Spiritual Undertaking deals in an abbreviated way to the application of what I have learned to dealing with my diagnosis of AD.
Transformation has been a continuous and unfolding process with me since discovering the spiritual/existential program in Alcoholics Anonymous (AA) first encountered by me 34 years ago. At the age of 38, my life in ruins, I turned to AA as a means of stopping my use and abuse of alcohol and prescription drugs which I was unable to myself. I was totally out of control and slipping fast. Entry into AA, adopting the 12 step program of it, turning my life and my will over to my higher power, quitting my use and abuse as a result delivered me into a totally new and different life.
The delivery amounted to a transformation. It happened by reason of my utilizing the spiritual side of the program of AA in all of my life’s encounters since that time.
The spiritual/existential part of AA is this: You are directed in the AA program to “Turn your life and your will over to the care of your Higher Power!” You do this when you cannot quit using and abusing alcohol/drugs by your own exercise of will power. You do it out of desperation having no place else to turn. You do it; it does it; abstinence occurs! For me it was the first time ever. I could not do it; my Higher Power did it for me. Wow!
Was that an epiphany! I was touched by something outside of myself, transcendent to me, that when sought was willing and able to do for me. Something was added to me, not mine initially, making me better as a result.
After the initial event of obtaining abstinence I kept applying the formula with every troubling event encountered by me. It worked each time “I put it on the table” as I called it. I called it that because at the start I initiated the formula by raising the troubling issue at an AA meeting and asking the group for help.
I was mystified by the efficacy of the formula. It worked each time I used it. Always for the better as a result! The aphorism of AA “Let go Let God” started to have meaning.
Was this a mystical experience, a miracle, a gift of grace, or all those other definitions religion likes to apply to it? It went deeper than that.
As time went on I realized I lived according to a plan. Not my plan, I would never have chosen the painful experiences with which I was continually confronted. It was a plan nonetheless, each event of it sequencing to the next event.
From where did it come, who designed it? I do not have a clue.
It is like the tangled tapestry as it appears on the back side of the loom. While being woven on a loom, on its back side the tapestry is just a tangle of dangling threads. When turned over it shows the tapestry as it really is. On this side of the loom you see a detailed and beautiful picture not the tangle of the other side.
After years, with retrospective hindsight I could see a tapestry comprising my life as it emerged from the entire tangle my life seemed to be as I was experiencing each event.
The tapestry showed me my life was managed by a plan. A plan I could never have chosen. It is also one that I can never reject now as I see the gifts it has produced for me.
It is the experience of my plan, the pain, the difficulties, the successes I secured as a result and the peace and serenity it offers me now as I realize it and appreciate it that I see what has been a continuing transformation unfolding since my first step into AA.
What is it about? I of course cannot tell you. I saw some answers in Chardin and Tilich, Christian Philosophers. I found more in Heschel and Buber, Jewish Philosophers. I found it in particular in Buber’s “I & Thou” The transcendent encounter with “Thou” offers credence to the possibility produced in the transformation."
I finally found the most extensive answer and the simplest in the teachings of Buddhism. AA is Buddhism Applied to Living. On finally studying Buddhism more than 30 years after my recovery from alcoholism I found the why for what happened and progressed in me.
I stepped beyond the material consequence and found my overall consciousness waiting to be worked with and worked for bettering my lot. Love, compassion, meditation, egolessness, accepting the illusion of our lives; it is in the concepts suggested by the foregoing words that I found the starting key. Humbly and respectfully utilizing these keys, working with our involvement in this giant algorithm that is this illusion of what we believe to be our life, that is where the answer for the purpose of this life is found.
Alcoholism has been the watershed of my life. Everything that occurred before my recovery was leading to my AA experience. Everything that followed that initial exposure to AA has been a building block to the transformation that has occurred within me as a result.
This describes the training wheels I acquired in AA and applied to the rest of my life. I call these training wheels “Acceptance”. Accepting what is and working with that rather than trying to deal with what I would rather it be. This has brought me untold peace.
I could never have chosen to be the miserable drunk I was. I could never have chosen to be a recovered “Alky” the rest of my life. The circumstances of alcoholism forced me to change course in the life I had lived to the time of my recovery. The change was not something I willingly chose. It was nonetheless something over which I had no choice.
The results were formidable, and they continued. They continued right down to my being diagnosed with AD.
Given that diagnosis I saw but two alternatives from which to choose.
The first choice: Suffer it and all its consequences. Ask “why me, haven’t I had enough?” and lament it from thereon in.
The second choice: Accept it; acknowledge there is nothing I can do about it. In that I can then look for some good because of it.
It is the second choice I have made. If writing this, my personal experience of these events, if it can be of some good for you or anyone else who might read this, then my having AD is purposeful and fulfilling for me.
That is the Buddhism I see and incorporate into my life. It is the exercise of love and compassion for the suffering of others, the desire to relieve that suffering, that is my gift in life, my source of satisfaction. It is directing my attention away from me to the needs of others. It is my spiritual goal.
I was educated Christian, in Catholic Schools, four years with the Benedictines in College. After AA and spiritual awakening I searched for more. I found spiritual fulfillment in Reform Judaism. My favorite field of study is comparative religion. It was in the pursuit of this I read Karen Armstrong’s “The Great Transformation” a treatise about the Axial Age named such by Karl Jaspers. From this I read Armstrong’s “Life of Buddha.”
Reading of Buddha and about Buddhism has been a further transformational development for me. It names and codifies the experience of AA applied to all of life. As such I remain grounded in Christianity, affiliated with Judaism, enamored by Buddhism, now able to call myself a JewBu!
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Friday, May 29, 2009
This is the first of four essays written under the common “…SPIRITUAL UNDERTAKING.” The first is IT IS ALL IN THE BALANCE, the second is MY JOURNEY IN LIFE. The third is HOW AA LED TO AD AND FROM THERE TO MY DISCOVERY OF BUDDHISM. The fourth is HOW AA LED TO AD AND FROM THERE TO MY DISCOVERY OF BUDDHISM. These four essays are part of the book I am writing: FROM AA TO AD A WISTFUL TRAVELOGUE
IT IS ALL IN THE BALANCE
When facing Alzheimer’s disease (AD) it is in our interest to keep one foot in this “Brave New World” we know as the AD Lane and deal with it as a spiritual undertaking; two feet is even better.
AD can be spiritual in this way:
Your life with AD presents you with a pretty drastic paradigm shift. Everything becomes different. Your existence is changed. You are at a point that can be described as Ultimate. It is ultimate in this respect: This shift is the last, it finishes in death. It also deals in some pretty heart wrenching experiences getting there.
If you did not know what your life was about before AD, things become much more defined and apparent after AD. Issues arise and become real like:
• Why did it happen to me?
• What can I do to get out of it, to make it go away?
• What will people think if they know?
• How will I take care of myself?
• When will my brain go?
• When will my body go?
• Will my care drain our life savings leaving my spouse without means?
• My God, I have a terminal disease!
If you recognize these issues as yours a logical conclusions asks: “What is it all about?” This question leads to: “There may be something more to all of this than meets the eye!” As the saying goes, “There is no atheist in the foxhole” this can also be said as true when you are in AD Lane.
What do I mean?
Most of us see life framed starting at birth ending with death. You live, you die, and events occur in between. Sometimes they occur in an order, mostly they occur at random. We have but this one life. We weren’t before. At the end we hope there is an after. We hope we go somewhere that is better; but really, we have no idea. We could simply stop.
If life is nothing more than birth and death, separated by random living in between, AD is nothing more than an unfortunate turn of events. Shit Happens!
Hemlock, Cyanide, Dr Kevorkian, Anyone?
Is there more to it than meets the eye? I believe there is!
Our lives do have consequence. Life seems to be a constant turn of cause producing effect, more cause producing more effect or effects producing more effects. The cause and effects of events continue to happen throughout our lives. One thing does lead to another.
It seems in living out the seeming randomness of this period “in between” (viz., in between life and death) a formula manifests itself. When we make the best of what occurs, making the best of what results, as one thing leading to another; if we act in each event to better ourselves, this provides us with the greatest benefit and the maximum satisfaction. We also learn exercising love and compassion for those around us improves our satisfaction far more than acting for our own selfish purpose.
A story can be made of this. Not because it happens once or twice. A narrative can be found in it because it happens continually around us. It did so before us, and, it seems certain it will continue to do so after us with those who follow. What is the story, the narrative? “There is purpose to all of this.”
The time “in between” has a purpose. The first purpose taught us by our experience of it tells us seek the greatest satisfaction available spending this time in between. It also tells us doing so we can and do find the most peace and serenity available to us in that time.
The broader story is this: There is something more that meets the eye beyond life, death and “in between”.
The logic of it all manifested in our experience of it insists something more exists outside of this life which can’t be seen in this life.
From what comes this insistence?
Chaos ultimately produces order to itself science tells us. There seem to be certain immutable laws. Something sent up comes down. Something set in motion stays in motion unless slowed or stopped by a sufficient counterforce. There is either right or wrong, good or bad, yin or yang. I like to believe the randomness of events cannot exist without its counterpart of order. Everything in life seems to have its “either or.” It has its warm or cold, happy or sad, up or down, plus or a minus. The quality of each event has its potential for its opposite otherwise it would not be qualitative.
Looking more closely at the chaos that the randomness of life appears to be, patterns do appear. These patterns put sense to the events. The patterns are represented in choices we make over the events as they occur. As they occur they become similar in purpose or lead to a common result .
What do the patterns disclose?
With each event encountered there are options we are called on to choose. Choose one over the other or some out of many. The options have a common measure. A choice in one direction leads to a better result. A choice in the other direction leads to a worse result. This is of course couched in many nuances. Sorting them out they do resolve down to “either or” that is “the better or the worse.”
The patterns also disclose the choices result in adding to or taking away from the “who” and “what” we establish ourselves to be by living this life. We become endowed with more or less than was there before the choice. The choices all add to or take away from what we were immediately upon birth. The choices are over when we die.
These pluses and minuses of living accrue. Every cause has an effect which links causing other effects. The result of each event is good, bad or neutral. Other than those neutral in effect the good and the bad are purposeful. They count; the good count in the plus and the bad count in the minus columns of the account of our life.
Life can balance these accounts. That adage, “What goes around comes around” can and does happen. Good can produce greater good. Bad can take its account making thing worse or because of it we are prompted to overcome the bad by doing good with it.
If the account is not balanced in life, which we all know happens, what becomes of the benefits one would think accrued by the good acts and the detriments accrued by the bad acts. Does the credit of it pass into oblivion with the life that terminates by death? We all know of cases where good goes unrewarded, and the bad goes rewarded by no retribution visited on them in this life for the bad they have done. Does an accounting just cease?
To say yes defies the logic of our entire life experience. It seems at least in the order we see and come to trust that every cause has its effect as every yin has its yang.
If there is an account that survives the maker of the plus and minus entries this assumes the accounting transcends life in some way. That thought introduces transcendence!
Our actions in life accrue beyond this life!
It is that which makes it all spiritual; that makes it a subject to be dealt with by any religion.
Considered as spiritual it is my personal preference to see AD a dubious gift, given me to do something positive with it. What is it to be positive about? To make my experience helpful to those with whom I have contact. This curse is my blessing, directing me to accept it, work with it and make the best of it. It gives a wonderful opportunity to exercise love and compassion for all of those suffering like me who do not want to suffer. Accepting the pain of an event causing suffering, working with it, relieves the discomfort of it, gives meaning to it, and exchanges the suffering of it for the serenity of having met its challenge.
Whatever joy there is in this world
All comes from desiring others to be happy.
And whatever suffering there is in this world
All comes from desiring myself to be happy.
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Wednesday, May 27, 2009
The public has little clue about Early Onset Alzheimer's Disease (EOAD), Less about Early Stage Alzheimer's Disease,(ESAD). Do I have my acronyms right?
There is an urgency when approaching Early State though the experience of one afflicted with Early Onset that is yet in the Early Stage.
(By the way, how could anyone have coined the two Earlys so similarily, than additionally coined the very similar acronyms and expect us with AD to be able to distinguish them. I have had this crap for three years and am still not sure which is which!)
When a person is afflicted with this disease while yet in their prime, when still a provider, leaving families economically and emotionally adrift it is tragic. It is sufficiently tragic for those of us seniors who get it. When you hit your 70's as I have the risk of getting something is more within expectations. It is easier to tolerate a diagnosis (Somewhat !) for an older person as for a younger person struck in mid-life.
Early Onset shouts so much more an urgent a cry of need for public support.
Early Onset's in Early Stage need more than the warehousing which is the normal care for the AD afflicted. There is so much that can be done to improve their quality of life and save the economy the cost of care that would otherwise occur sooner as later without appropriate early stage care.
Medication, Daily Exercise, Good Nutrition, Stimulating activity can prolong the stay in Early Stage. Programs providing this along with Early Detection/Early Diagnosis are needed. The plight of the EOAD is a voice of urgency calling for this help.
Programs I have been proposing are:
a. First Stop Programs: A Place With People such as Early Stagers that patients just diagnosed can come to and learn about AD.
b. Support Groups: A Place With Early Stagers open to the public with support, camaraderie and regularity to Ad afflicted provided.
c. Volunteer Coordination: A central source to find volunteer opportunities for AD afflicted.
d. Structured Wage Earning Workgroups: to provide both work and wage to EOAD afflicted.
e. Creative Programs: To Stimulate the Minds and Prolong Early Stage structured so they are social, creative, intellectually stimulating and more than the distraction of most day care programs.
The list is not complete nor is it exclusive. There are so many other programs that can be undertaken.
We have concentrated so much on finding the cure, we need now start concentrating on better finding more care.
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Tuesday, May 26, 2009
Aspire I will in spite of all,
That is what it’s all about.
My life’s been good
Though rough in spots,
Each one of these
So good God give me
Serenity, Courage, Wisdom,
For this last rough spot
That I may give it dignity
Handle it positively
And, above all with grace!
Monday, May 25, 2009
• “I think we can all agree, this monster is hell. Its tentacles are climbing inside out of our brain(s). It is trying to control us. Yes we get kicked in the gut, but somehow, we always manage to get back up.
What's difficult? When you're slap dag in the middle of anxiety, anger, pain, confusion, whatever it is that the monster is creating...that's when we need each other, not fight each other!”
• “It is my opinion, based on decades of fairly significant political awareness, that our government is the logical result of a representative democracy in a capitalistic system. Nothing happens except by bribery. They've even legalized bribery, calling it "campaign contributions." There is a snake-pit of ways they can funnel the money into this and that.
We, the dementia community, couldn't possibly muster the money needed to bribe enough House members to make a difference, and no way we could afford a Senator.
Another reason to despair is that we are going to cost way too much money in the long run. It's far more economical to let us get by on what little there is now, than to commit to higher spending levels. Remember, our government is the only democracy that lets people go without healthcare as a national policy.
Our government is already accustomed to letting people die without adequate healthcare. They turn a deaf ear every day.”
If I am going to be kicking and screaming it will be in a purposeful way. My way is to try ardently yet patiently to get something done.
I write and I write about it and I am starting to hear echoes.
People are looking at doing more for Early Stage.
Alternative care models are being looked at. Things like group homes and spousal self supported assisted living are being discussed. Non-profit services dedicated to providing a cadre (dedicated group) of available home health service providers to serve a group in a multiple living facility or neighborhood are being tested.
These are some of the things we can do for ourselves by promoting and grouping together.
I have more hope for a new and better way emerging with the change we have seen in government over the net effect of "starving the beast" that we have been employing in the past. It will need time, funds have been squandered on war, Wall Street and tax cuts. Sometimes government can find incentives making possible what it cannot fund.
Lets look with hope as expect more of the same duplicitous crap!
So everyone, channel the anger, focus the rage, make it make a difference for us!!!!!!!!!!!!!!!!!!!!!!!!!!!
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Sunday, May 24, 2009
I do it as a tool to keep myself socially, creatively and intellectually stimulated for the purpose of prolonging my stay in Early Stage.
As a second reason I do it with a sense of purpose. To survive diagnosis of this terrible disease, using tools learned 34 years ago in AA and practiced since, I accepted the fact of having AD, committed myself to sharing my experience as seen through AD eyes with the hope of doing some good.
I live the aphorism: "The way to happiness is seeking the happiness of another not yourself." Sharing gives me a good feel in the hope that it might give a particle of help somewhere to someone.
After writing I am enervated, loaded with good feeling and fulfilled in believing I have filled my time constructively, personally helpful to me, and having possibly done some good with my experience and my effort.
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Friday, May 22, 2009
PROOF OF THE PUDDING, I GOT AD!
Richard Taylor wrote in his book if he had a dollar for everyone who told him you can’t have Alzheimer’s disease (AD) he would be a very rich man. The same is true of me. I have it. I wish I did not but I do. I am blessed having had it diagnosed early while in the very early stages of the disease.
My Early Diagnosis has given me the opportunity to maintain a better quality of life. It further contributes to prolonging my stay in Early Stage. Every curse has its blessing. Mine is in having this terrible disease I have caught it early I am positioned better to do something of value with it, contribute to my sense of self worth as a result. It is an altogether new volunteer activity for me the doing of which give me purpose and a very good feeling.
I am in the early stage of AD as confirmed by my Doctor, two extensive Neuro Psychometric Exams and a variety of other evaluations. This has been validated with my personal experience and observation over the past 3 years since diagnosis.
At the outset I did not have a clue. My wife Diane insisted my driving was way off. The doctor told me not to drive. In an effort to prove her wrong I took a simulated driving test at the Sister Kenny Institute at Abbot Northwestern Hospital. I flunked it miserably. June 30th 2006, a Neurologist told me he could beat around the bush or come out and lay it on me. I told him to do the latter. He did. He said I had IT! I was just in the very early stages and had a lot that could be worked with. This was the benefit of an early diagnosis.
I still have a lot of memory. I still have a lot of cognitive acuity. I am severely limited in specific areas of function by reason of my Alzheimer’s
The findings in the Neuro Psychometric Exams, one in 2006, one this past year, found the following:
I am abnormally low on the executive function scale.
My ability to Multi Task is severely limited to almost absent.
My perception of things seen peripherally on the entire orbit of my view is insufficient. This has resulted in some bad falls on my failing to see things in plain sight. It prohibits my driving a car in any kind of an active traffic condition. I cannot ride my bike on the beautiful bike trails of Minneapolis anymore because of the vision problem.
The diagnosis initially given me and confirmed 2 -3 years later is A-Typical Alzheimer’s Disease
I can’t drive, I can’t bike, I can’t balance my checkbook, handle funds, do more than one thing at a time.
The rest of me is still working. I am told by my neurologist: “Eat right. Exercise Daily, Stimulate your brain doing creative activities. Be out and about and socialize, do not crawl into a corner!”
This works with other folks. I believe it is working for me. It is capable of prolonging me in the early stage. That is all right!
Some time before any of my problems developed I realized I could no longer handle our banking. I asked Diane to take it over not having a clue as to why. I was 43 years a trial lawyer. Check books and bank accounts were small potatoes for me until I realized I was fouling them up.
It took me longer to do any task. If I was distracted or interrupted I lost it altogether and had to start over. This was very upsetting. I was not “keeping up” not having a clue as to why.
I took some miserable falls without an idea why I fell, why I failed to see what I tripped on which was in plain sight.
I fell once in Sak’s tripping over a glass case in plain view and was taken to the hospital by ambulance. Another time I tripped over some material in plain view laid out on a parking lot while being worked on. This entailed another trip to ER. Most recently I had extended hip replacement revision surgery that was wicked. The fall downs did my 12 year old hip replacement in; it was literally pulverized. The revision of it as well as the 2 months near total bed rest in recovery were among my more difficult experiences of life.
A diagnosis of Alzheimer’s is proved absolutely on the conduct of an autopsy. I am willing to wait for that. The differential diagnosis performed for me ruled out other causes including vascular insufficiency, frontal lobe syndrome, all of the other “could be” options. My problems are consistent with A-typical variety of Alzheimer’s disease.
The AD diagnosis was validated by the degree of cognitive acuity that returned when I added Aricept to Namenda as my medicinal cocktail of choice.
I benefited from Early Detection/Early Diagnosis. When caught in the early stage between utilizing the tools of “Eat right, Exercise Daily and Participate in Social, Creative and Intellectually Stimulating Activity” along with the blessing of the medication that works with me, I am continuing to thrive in Early Stage and I believe my progressive debilitation has been slowed as a rerult.
There is a growing belief that with the foregoing the Early Stage can be prolonged. That is of advantage to me as well as the public at large saving us from being a further burden of care on society.
When diagnosed I made a commitment to accept the fact of this disease with grace and use it to make having this terrible disease worthwhile. My way of doing this is to share personally and advocate as much as I can in speaking, writing and participation in matters relating to AD.
I have been doing that, serving on two local boards of AD. I have served this past year as member of the National Alzheimer’s Advisory Board. On June 3, My wife Diane and I are traveling to Washington DC to be on a panel discussion before the Federal Administration on Aging to discuss the needs in the Early Stage by one afflicted by AD and by a caretaker.
I do a pile of writing and believe that together with the voracious reading I have always done along with my AD advocacy activity is prolonging me near my current level. By early diagnosis I have been afforded this opportunity.
I have AD like a lot of other folks. I am nonetheless lucky to have a sharp wife who is a gerontologist and a bright young Internist who has been around the block more than once. They had the fortitude to lay it out to an otherwise recalcitrant old fart and force me to do something about it. They are both a gift from my Higher Power.
I believe more will be found like me if we go forward with Early Detection/Early Diagnosis.
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Tuesday, May 19, 2009
The problem lies in the Cost of Care, Economy of Care and the Need of a Different Kind of Care for those in Early Stage AD. To do that we need all the publicity we can get. We need to give the media as much as they and the public can absorb. Not to get the Gov't to take care of us but rather to stir public opinion to help us take care of ourselves.
If Gov't does it what happens? More administrative spending, more bureaucratic spending and entrenchment, then spending by the facilitators on funding, on building, on their salaries, on no-bid contracts with their cronies, on myriad other ways to line their pockets and continue to fleece the public with good intentions. After all the profiteering then they spend on the need for which they exist, namely helping those it was set up to serve, if of course there is anything left.
Like Pogo we should see where the help will come from, it will come from us. We have a mission and we have a cause. We can help this Nation save itself from one of the next fiscal calamities it is facing, that is: The ESCALATING COST WHICH WILL HAPPEN from the growing number of Boomers diagnosed with our disease and insurmountable, unreasonable and inefficient
This is a serious mind boggling catastrophe that will happen!
Gov’t cannot and will not solve it. To date it has failed to resolve the death march of Social Security short of cutting benefits. It is trying to solve the Health Care Debacle of our Nation which the Health Care, the Insurance, the Business/Industrial and the Conservative Blocks have been ardently opposing. It has a dubious chance of success. Look what the disingenuous bunch did with the Part D Plan for Medicare covering drugs. I was doing better under a private plan which is no longer available to me. It is pre-empted by my qualification for Medicare Part D.
The lobby for the enrichment of the few is subtle and insidious. Today in MN the Governor's cut of health and child care survived an attempt to override it by new Legislation He vetoed the bill that prevented his cuts, to balance the budget and maintain funding. The Governors position is no tax cuts, cut back on spending “starve the beast”. As part of the cuts the MN Senior Federation on Aging has closed their doors. In my view this cries to heaven for vengeance!
The Senior Federation was singularly the best source of interpretation and evaluation of health care programs and insurance in the State. Yet our State still has funds for stadiums. With Gov’t aid the Twins are getting a new stadium, the U of M just got one and the Vikings are lobbying hard. We do have a domed stadium that served all three that they needed some years ago because MN is so cold. Now they need not one but three new ones because open air play is less confining. What is wrong with this picture?
The solution is up to us. We, who are already on the shelf because of our disease are not the best to put the solution together, nor are our Caretakers. Unfortunately we are the only ones.
We need to work loud and hard to get help! The Alz Tapes are helping. The direction Alz.Org is taking on reviewing new programs for Early Stagers is helping. There seems to be a growing concentration on the economic benefits of Early Stage care directed towards prolonging the Early Stage. This is good. It is all occurring by reason of the increase in publicity. Perhaps we are STARTING TO RACE FOR CARE ALONG WITH THE RACE FOR CURE!
Evidence is mounting about the benefits of creative and intellectual activity prolonging Early Stage. ABC reported last night on a British Study supporting this proposition.
I want to stay in Early Stage as long as I can. When I pass over to mid and late stage, I want the cost of my care to be as easy for my family as possible. We all need to organize, keep pressing and supporting all the publicity we can to further this possibility for all of us and for the country.
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Sunday, May 17, 2009
I am sorry you are on the edge of this razor we all know too well. What can one say to ameliorate other than COPE-CONTINUE? This too will pass or at least we sure as hell hope so!
In AA when one didn’t understand, was dry drunking or the program was somehow failing them, we would often say: “Just keep your body coming (to meetings) the mind will eventually follow.” The advice just given by Tracy is the best equivalent that I see to going to a meeting because there are few to no peer group meeting places or permanent support groups available to which to take your body. As she said "Keep talking to us."
As an additional exercise I would suggest this:
There are ten of so many things. Prepare a set of ten more things: “The ten top reasons to be angry as hell about the intrusion of AD into my life.”
This defines and confines the reasons for your anger. Once done read them, think about them. What is the cause of your anger beyond the reasons? Is it because of the pain it causes you and those around you? Is it because of the limitations that have intruded your life? Is it the loss of your independence, manhood, job, sense of being a provider? This list of “what ifs” is a long list of the many reasons any of us have for the intrusion of AD cause of our blind rage.
If each reason is valid then start exploring what if anything you can do about the cause of your anger. If there is something you can do, do it.
If there is not, as I expect you will find, then ask yourself where does that leave you? Your answer will likely be “I got AD. AD is final. I have nowhere else to go!” The only option left is to then accept it, embrace it. Tell yourself “I have AD, that’s it! What can I do to make the best of it.”
My choice after this exercise was to get on a soapbox and say and write about what I can do to help others in the same boat as me. That is why I am advocating. Hopefully it will contribute to more care given those of us in early stage to alleviate the terrible loneliness, boredom and despair we all experience as a result of this diagnosis and its attendant circumstances. That comes from AD placing us in an entirely different class in our society.
To accept it, to make the best of it, is no easy task. No easier than it is for the alcoholic who can’t quit as much as he may want to because he is losing his family, job and all he possesses including his life by continuing to drink. He can’t quit, he sees no life for him if he does, but to snuff it out he cannot allow to happen. Therefore he takes the step; he accepts he can not control it. He must turn it over and depend on a power outside of himself who can and will take care of it. This is the ultimate “Hail Mary football pass!”
In all our rage about it the distinct character of AD is unremitting in its capacity to take us inch by inch; taking all of those parts of us we treasure and can’t do one damn thing about the loss of. We must then accept it, like accepting everything else in the life over which we have not had a choice.
What are those things over which we have not had choice? The list is endless starting with the circumstances of our birth ending with the circumstances of our death and so many other things in between.
Why does it work to accept it? I do not have the answer other than for me as it did in AA it works in every other aspect of my life which I turn over to the care of my higher power.
I read Buddhism to help me with my acceptance. Buddhism is not my religion it is my rule book for living. The more I read the more it makes sense, even to the point I start understanding why it works. There are many aphorisms in Buddhism as there are in AA. An appropriate one is this:
Whatever joy there is in this world
All comes from desiring others to be happy.
And whatever suffering there is in this world
All comes from desiring myself to be happy.
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Saturday, May 16, 2009
My Story: Alzheimer's From the Inside Outrecently commented on his Blog Site http://www.richardtaylorphd.com/ comments given at the
Alzheimer’s Disease International World Conference, 2009which is worth your reading. I posted the following as my response:
I just read the foregoing comments you made at AD Int Conf. Like all else you write I am in 500% agreement. My avocation in the last year has been advocating on the issues of Cost of Care, Economy of Care and the Need of a Different Kind of Care for those in Early Stage AD.
A statement you were quoted as making by lbramly on Alt/Alz.reporting on the Marep Conf about the malaise associated with the purposeless life of living Early Stage where too often “substitute activity for purpose.” occurs hit so close to what I have been writing and saying:
It is in the interest of the community and nation to do something more than is being done with folks in early stage to prolong their stay there. It enhances their quality of life. It also correspondingly assists everyone else by keeping us out of the orbit of the cost of care longer saving everyone that expense.
This of course leads to the next of the issues I have been blabbering about which is finding Economy in Care. The institutionalized for profit infrastructure providing most care services has for many unnessecary reasons become unforgiveably confiscatory in expense with no help in sight from gov't or anywhere else. (Current fledgling Health Care Reform excepted)
On the "Boards" where I have been writing one of the group has coined this slogan "When are we going to start running for care and not just running for the cure."
You raised this very point some time ago on either DASNI or Dementia USA. I read it then and have since been a believer in your position. I am not given to paranoia, but it is hard not to see the encroachment of the the Health Care System and Pharmaceutical Industry concentration on profit and return usurping our spendable resources intended for health care. I see this and wonder if concentration on raising funds for the cure at the short change of the economy of care is too part of that hidden agenda?
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Monday, May 11, 2009
Was it too clean? I don't know. I do know I do not want to dwell on the tragedy and the mess that my loved ones and me face in the progress of my disease. I want to stay as peaceful about it yet remain in the real world as much as possible. Does portraying it in the noir of its possibility do anything more for our family, our friends and others trying to understand our disease? I do not know.
I liked the presentation on the lady who tested and lost her right to drive. Right On! Been there done that! I felt exactly the same way when it happened! That was when my freedom left the room.
I loved the first presentation of an 87 year old in Early Stage. She was endearing, humorous, quite functional as so many of us in early stage remain. She perfectly introduced AD to the public. She was not the USUAL STEREOTYPE of AD.
The last segment tore my heart out. I hope I can go the same way. What a measure of love he left on! His loving wife, who wanted him to stay, to keep taking the medication to prolong him, when asked why prolong him by the doctor, decided, as much as she wanted him present in her world it was not fair to him nor consistent with his wish to not be kept going with artificial means. What a wonderful woman, wonderful caretaker, wonderful expression of the selflessness of love. I loved her right back! I cried tears of unadulterated love on his tender good by.
The fellow who bought his final brain box, an urn for ashes, talked my feeling about it all. Why hang around when the brain has exited? My JewBu outlook prevents me making these arrangements. But if the brain is gone is there cause for the rest of the body to remain?
The other segments were harder, but were not nearly as bad as I expected. I know there are worse conditions that can happen. I simply keep trying to accept my AD, keep a serene outlook trying to make the best of it and hope this will deliver a more accepting attitude into my dotage when the storm hits.
Saturday, May 9, 2009
The following paper is an amendment and revision of one I wrote earlier in part on the need of more service directed to Early Stage AD afflicted. The revision was done for a group in Central Minnesota in charge of developing and providing programs for the Aging. They have had a study performed that told them the once diagnosed those in Early Stage are sent home with no direction again until they have reached that point they need outside care, usually having reached Mid Stage. They are studying ways and means of filling this gap.
I am posting this paper as one being on topic and of concern to those of us affected by AD. It is long and was meant to cover the issue I was presenting. In spite of its length, I think it might be of interest to those willing to stick reading through it.
It is posted FYI should you have any!
MORE CARE IS NEEDED FOR EARLY STAGE ALZHEIMER’S
There is an adjunct service crying out in need for attention. People with Early Stage Alzheimer’s disease, (AD), are falling through the cracks of non-attention and left to wander in isolation, loneliness and boredom until they are ready to be warehoused as mid stage or late stage.
ON INITIAL DIAGNOSIS
People learning they have AD have no place to go. They want to know about the disease, what to expect and how to cope with it. They need to learn the skills of what to do about it. It is a family disease. The family needs treatment for it. The family has the same need initially for information as the person AD afflicted.
The person’s world and family are abruptly and irreparably altered by AD. It presents a collage of predicament that must be faced which needs a set of tools with guidance for facing them.
There is so much need for first stop places, gateways for folks suddenly confronted with the question: “What can I possibly do now? How do I handle this? How do those around me deal with it, deal with me?” We need a place to come, to sit down and learn how. Those of us who have it and are early stage are ideally equipped and more than happy to provide that service. We need help in organizing it, a place to provide it, entities to gather inquiries and refer folks to it.
The how to, what to and where to, these are incidental. They can be regular “get together for coffee” times and places, organized support groups, gatherings at Alt.Org, churches, public places where peer people able to help regularly attend.
It starts in the Doctor’s office. With a good system in place from the organization sponsoring First Stop, Doctors and Staff could have available all of the places where a person might go and who they might call. This is simple. If they have the places and the places are up and running they can simply say: “Go there, they will tell you what you need to do, what you need to know.”
We all need to understand that quality of life continues for those of us with this difficult prognosis. We just have to know what to do with it. It is easy for some of us who have been knocked around a little and had to learn it the hard way. Some other of us for whom life has been smoother need more help. Those of us who have struggled in other arenas will give it to those needing assistance if we can find them and see them to do so.
A FAMILY DISEASE WITH SOCIAL, CULTURAL AND PSYCHOLOGICAL ASPECTS
Ours is not only a medical disease it is a disease with particularly difficult social, cultural and psychological ramifications.
It is a family disease suffered by the entire family. There is crying need for help coming from caregivers, children and grandchildren. These are the ones who all also need help in accepting the fact of the disease and coping with its results. Giving them help is critical!
Care givers are drained; the unsung heroes are devastated by the loss not their own; suffered twice as much by them. They need help, they need respite, they need support.
Children, friends, peers, have trouble grasping full understanding of the events that occur following the diagnosis, understanding the process and course of the disease.
Too often their reaction is couched in not knowing what to do. Therefore they do nothing. Delay of action leads to embarrassment. This results in benign neglect by them. This in turn isolates the afflicted one if not the caretaker too.
Children, particularly adult children, can get into denial. They don’t see it every day. They do not want to think Mom or Dad has this horrible affliction. They don’t want it to be happening. This produces everything from downright denial to simply deferring it as a matter that they would rather not discuss or deal with right now.
The denial, the separation, the misunderstanding isolates the person with the disease and often the caretaker.
Roles change for the entire family dealing with the disease. This is particularly difficult for the afflicted one to accommodate. Vulnerability is an altogether new thing for many of us. Personal reaction can range from irritation to depression to inability to deal with or accept the new and often subservient role. It is hard enough for the caretaker to step in and do everything without having also to deal with identity crises by the partner.
MORE CARE NEEDED THAN JUST THE CAREGIVER’S
These are all matters that can be the subject of support by their fellow afflicted who have been dealing with the problems before them.
Mid and late stage provide an altogether different challenge.
For those stages the more costly care becomes needed.
What needs to be addressed is the early stage afflicted who have different needs than mid stage and late stage AD Afflicted. They are being overlooked and they can provide economy in care if treated accordingly.
Currently so much of the care is palliative. This is properly so. It is the kind equipped to benefit the middle and late stage afflicted who are unable to help themselves and whose condition is not able to improve from care.
This same approach for early stage afflicted defeats any benefit that might otherwise accrue for them. It doesn’t deal with them as they are, cognitively alert, creative, interested; it invites them to become passive and unresponsive. This simply encourages them to slip into a more dependent and needy state.
In early stage the afflicted are best able to remain in place if provided for appropriately. The longer a person remains in early stage the less the corresponding cost of care is needed for that person.
Positive creative activity contributes to the person in early stage staying in early stage longer. Any care approach that stimulates and activates is more appropriate for this group. In this group although the process of AD can’t be reversed it can be prolonged.
WE NEED TO DEVELOP PROGRAMS TO DEAL WITH THOSE IN EARLY STAGE DESIGNED TO DELAY THEIR PROGRESS INTO MID STAGE
This need is critical. There is a national calamity impending with the exponential increase in incidence of people contracting AD. As the “Boomers” reach their senior years and everyone continues to live longer we will see a great increase in AD in this nation. Already statistics tell us care for AD afflicted is twice that for any other disease hitting a substantial number of us in our senior years.
The costs as they aggregate are insurmountable. They come out of the personal pocket of each of us unless we do not have sufficient funds to pay it ourselves. Medicare, social security do not apply. The government says spend down what you have first. When there is little or nothing left apply then for assistance. Although dubious for the afflicted the spouse surviving who also has to spend down has nothing much to live out his/her years during and after the start of assistance.
We desperately need to address the Cost of Care, find Economy in Care and Keep from Care all of those in Early Stage not needing it. If we can prolong their stay in Early Stage they not only have a better quality of life, they are saving all of us a lot of cost that would otherwise be incurred for their care.
CONCENTRATION OF A DIFFERENT KIND OF CARE FOR EARLY STAGE CAN PROVIDE SOLUTIONS.
Particular emphasis should be given services concentrating on early stage Alzheimer’s afflicted. They remain sufficiently cognitive and articulate, able to help themselves stay in place in early stage. Kept in place they will not contribute numerically to the deluge of need that will arise from the added people needing care for middle and late stage Alzheimer’s.
Public policy can reap the benefit from concentration of services and enhancement of programs for early stage. Doing this will provide cost of care economy and give time for continuing research to find the cure. Time is as important a need for finding the cure as is funding for it.
A DEFINITIVE POSITIVE RESULT CAN BE OBTAINED.
Why is this so? Many reasons, the most prominent:
1. Early Stagers are more stimulated to exercise daily or often multi times a week. It is a given, exercise is the best treatment and the best means of staving off the debilitation inherent in our disease process.
2. Social activity stimulates continuing at an even cognitive plateau, inactivity and isolation accelerates progressive decline.
3. Creative activity enhances cognitive ability to find alternative pathways to compensate for mental loss. This prolongs the cognition and acuity.
4. One study suggests the activity of socializing, advocating and dealing in network with peers about AD boosts cognitive performance of those doing it. This is consistent with the personal anecdotal experience of those participating in such activity.
5. Current modalities of medication prolong the cognitive state and sometimes increase acuity in many of those in early stage.
The more the early stage can be prolonged for a person the greater economy of cost can be obtained in an otherwise foreboding deluge of epidemic-like escalation in cost.
THE NEEDS OF EARLY STAGE AFFLICTED ARE BEING OVERLOOKED
Just as little exists in programs of first stop attention for people on being diagnosed with AD, little exists in programs for coping and living with Early Stage AD. More is needed to allow the AD afflicted while able to self care or have needs met by the caretaker to remain in this stage and thereby stay out of the costly treatment system.
There is much that can be done.
Alcoholics Anonymous has been successful not only in its excellent 12 step program, its vast network of AA meetings give a support system not seen equaled for any other group needing support.
One of the key tools in psycho therapy is group therapy.
Support groups formed on the 12 step model or other modes exist for the many needs of people needing support of their peers.
We need a greater effort in forming more support groups for AD.
With or even before a diagnosis of AD the afflicted suffer an ostracization. This occurs in many arenas. People simply quit coming. We Early Stagers shy away because we are different. We can’t keep up any longer. We can’t move around easily. We are just no good at initiating or organizing things. Friends and family don’t know what to do with us or what they can do with us so they don’t do anything.
We depend on our caregivers who because of us have doubled their regular role with having to take over our role in addition to theirs, than add a third role, that of care giver for us. The caregiver is the true unsung hero in this mix.
The caregiver finds a definitive shunning as well. For lack of time, by reason of the embarrassment of others, of simply being left out of inter couple activity because the question exists whether the one afflicted can participate any longer. So many things ostracize the caregiver as well as the afflicted.
The needed programs center on getting the folks affected together to help one another and to be helped by available resources.
Setting up regular meeting places for get together of caregivers afflicted and family members are needed. Whether these be for coffee and socialization, or more formal support kinds of meetings or training and teaching, we need a place to go, a place to get out.
Whether this be church basements, civic places or conference rooms at Alz.Org, social service places, clinics or wherever.
Programs of Service
Our local Alz.Org has been meeting with a variety of representatives of care organizations in the community to find ways and means of providing for AD afflicted. One of their concentrations has been early stage.
The Minneapolis Institute of Arts has formulated a program for giving guided tours to us with a staff member or docent providing highlights for the Art Exhibits toured. These have been very enjoyable, informative and a wonderful way for all of us to be together in activity.
The Walker Art Center in Minneapolis is now setting up a similar program.
The Gathering has been set up by the Lyngblomsten Organization in nine different locations in the Twin Cities providing day care services. The service is directed to day care activity designed to meet the needs of mid stage and early stage being served together.
Other programs are being contemplated the result of the meetings at MN-ND Alz.Org. These include: field visits at an outdoor recreational facility; A program of dance by a performing art group; Others programs are being encouraged as the meetings continue.
What is needed and doesn’t seem to exist in many places is a more accelerated, cognitively and creatively challenging form of program for early stage afflicted. One I have discovered is in Winter Park FL called the Brain Fitness Club.
In its formation one of the organizers noted: “There was a support group and adult day care, but nothing in between,"
The club's program offers physical exercise, socialization, brain building, speech therapy and fellowship. The program provides an individualized plan of care for each member. The program clinicians evaluate the members' cognitive communicative abilities and design exercises around them, including providing members with a binder of exercises tailored to their interests and abilities.
More is needed. The escalation of incidence disease and cost of care is immanent. Cost of care and economy of care are in sore need of attention. A greater concentration of affective services are needed for early stage afflicted. This provides a way in which to economize and to meet an unmet need of an overlooked group suffering mainly in silence.
Wednesday, May 6, 2009
I can appreciate your daily engagement. If we become addicted to alcohol this suggest we have a high potential for addiction to anything else. This is not always true but with many of us it is. I suspect it is a genetic thing. If there is something to obsess about give it to me I will work it over thoroughly for you.
I have been recovering for 34 years, doing so but 1 day at a time. I am dedicated to the mystical engagement that occurs when turning it over. This is a transcendent event that keeps working with everything we turn over. Working the tools of AA I learned to "put it on the table" as I would say which consisted of this: Any time I faced a problem that I was able to admit, I took it to my group, I put it on the table. When I did, one way or the other it would be taken care of. Often painfully; often in the most unexpected way it was always taken care of.
This being taken care of resulted from continuing to turn it over in all of my affairs as the Big Book says. My higher power could and would take care of it.
Over the many years I went from obsession to obsession, work, money, things, anything encountered in living, you name it, I went for it, got it, held on ever so tightly and found in the end no satisfaction in it whatsoever
My calamities in life continued. I lost my wife, my family, our big fancy home, finally my very successful law practice. When I sold it and started over in semi retirement I thought I was done. Then my health tanked followed by a diagnosis of Alzheimer's disease three years ago.
All this calamity brought home to me it ain't so bad when it happens as obsessing about it should it happen. I keep turning it over. Alzheimer's (AD) gave me a new commitment that has kept me from coasting my way out of life. I want to make this AD worth something. I am doing everything I can do to help others with it.
I looked back and suddenly realized in this process, aging, accepting, acquiescing looking for the good side of these calamities, just as I found it in my initial recovery, when I thought my life had ended, I no longer was plagued by obsession.
Why? Ken Follet said it in his book 'World Without End:' "When you have lost everything you have nothing more to lose." AD put me there. Having nothing to lose I no longer had anything to gain. I was happy with where I was at.
Following this process I discovered Buddhism. The losses of my life started making sense to me. The outcome of each loss made me the better person for having suffered it. Consistent with my inquiring nature I studied the question of why is this so? It was answered by the teachings of Buddhism.
Buddhism is why AA works. AA provides the tools for me, Buddhism provides the answer for me, the two working together have brought me far more peace and serenity than I ever knew possible.
My Blog: AGING IN PLACE http://im-mike.blogspot.com/
Sunday, May 3, 2009
When a member of a family dies the family goes through fundamental change. The position held by the member who has passed away needs to be filled somehow. Each family member changes to accommodate this. If it is the father, a new head of the family emerges. It happens with the loss of a parent, a sibling, a child. Before the death the family operated in their relative positions in which they were accepted and relied upon. This was the family foundation. When loss of one position occurs that slot has to be refilled somehow for the family to continue functioning or it fails.
When a member of a family is diagnosed with AD it is like a death in the family occurring. AD is a family disease. All of the family is affected. The affect is different in each member. A shifting of responsibility does occur, relationship attrition will also occur. Things change dramatically.
The loss of position, responsibility and regard that occurs to the one afflicted with AD is profound. I realized I was no longer as I was. I was no longer in charge of family matters. I simply could not handle them. I had to turn them over to my wife, be vulnerable and rely on her.
In my case I could no longer drive. I loved to drive, drove everywhere. We traveled Europe. When we did I drove. Back roads, driving on the left, the more wild the traffic the more I loved it, I was in my element. “Call him Mario” my wife would say.
Without wheels I was isolated. I needed a ride. How awful for the independent soul that I was. I found a sense of independence riding the bus and that replaced my loss of wheels a little. It was a challenge an adventure and above all it gave me freedom of movement.
Then they realized my tripping over things in plain sight, falling down then on to ER, were all a result of my AD. With that I was told, “Quit riding my bike.” This was demoralizing. I loved to ride and Minneapolis has some of the nicest bike paths anywhere.
Then I developed hip problems from falling down. I finally shattered my 12 year old hip replacement. I had to have it surgically corrected. They called it a hip revision. That is understatement of the century. The revision consisted of five and a half hours of surgery in which they removed the shaft, the ball and the cup replacing them all. To do so they broke off half the femur, dug out the old cement, the deteriorated bone and put it all back together packing it with cadaver bone chips around new hardware, wired it all together than sewed me up. My God, the trauma it caused my system. I was all but on my back for two months and only now more than two months later I can walk for ten minutes. That’s it.
I haven’t seen the inside of a bus in five months. I haven’t been out of the house more times than I can count on one hand. I am home bound, thank you AD.
Isolation is my partner. A silent subtle abandonment takes place. Those around us pull back. This seems to occur for a variety of reasons.
Many old friends and acquaintances operate on the stereotype that if I have AD, I must be standing in the corner drooling, talking to my self, unable to find my directions in order to walk out of the corner. There is nothing left with whom they can communicate. Therefore they simply count me out, strike me from the list.
With others it is a little more oblique. They don’t know how to deal with someone with this disease; therefore they procrastinate doing anything at all. Then they get embarrassed by the lapse of contact and simply let it go and disappear from view.
Others are patronizing. They are over solicitous with care to point of awkwardness. They don’t seem to have a clue I am still a person. My integrity remains intact. There is a lot of me left that needs their company, their companionship, their social and intellectual stimulation. I need this more than holding my hand crossing the street.
Family takes its hit too. Some members are great; they shift around accommodating the change of circumstance and extend their love and involvement. Some friends with AD have complained their children are dubious about the diagnosis and sometimes a few are downright hostile.
The dubious ones simply do not get it. “So Dad has this disease” they say. “He sure seems the same.” As I go along the discrete changes that occur are so gradual they go unnoticed. They would rather not deal with what they cannot see.
Their are children who cannot accept it at all. The disease is a personal confrontation they do not care to have. It is too difficult to believe this could be happening. It is so fearful it is easier to deny. Either that or there is hostility of “How could you do this to me?”
So much is tied up in their personal image of parent they cannot accommodate that parent becoming less that the revered person he had been.
The activities I enjoyed have become limited.
I love to golf. Not at all good at it I nonetheless enjoy it. It was not difficult to drive to a course hit a few, play a few rounds if there were openings. I enjoyed going out with friends and worked at setting up these events. Then I had AD. I could no longer drive. I wouldn’t go out unless a friend called. Those calls waned away. My pride or sense of integrity keeps me from calling now. If I do the friend has to pick me up and bring me home. My wife wants to take me and pick me up. My pride gets in the way of this. I can’t stand having to be hauled around like a child. It is too difficult to get on the bus with my clubs and go out to the course. They therefore sit home as I do.
I was learning to play bridge and I loved it. I got AD and the learning foursome quit calling. It is true my abilities at the game were digressing as theirs were progressing. What could they do I couldn’t keep up? I feel no animosity just sadness, I could no longer handle it.
I was going to volunteer at the hospital. I thought better of it as I pondered having to tell them I had AD. They certainly would not trust me to wheel a patient to a destination for fear I might get lost even though my sense of direction is very intact. What would there lawyers say if anything happened. What would they say if they had me doing anything as a volunteer?
As soon as I am physically able to take the bus I am determined to find something in a safe setting, safe for the organization for which I volunteer and safe for me. Nonetheless this can be such a pain in the butt!
I joined a group that was providing respite time to caregivers by taking the AD afflicted in for the day. The promise was good fellowship, enjoyable activities interesting and supportive environment.
When it turned out to be a baby sitting exercise I was disheartened and dismayed. It offered us no respect; no attempt was made to interact with us on an intellectually compatible level. We were assumed to be incompetent. Sitting in a chair waving arms to exercise, going outside and throwing lawn darts as a group, watching re-runs of I Love Lucy and the Honeymooners, it was all just too much!
THE WORST LOSS
AD performs a social and familial emasculation of the self. The use of the word emasculate is harsh. Harsh as it is it best defines the sense of having the disease. There is an undeniable association of loss of manhood associated with how I relate once classified as AD Afflicted and after accepting the limitations it has had on my life.
I am no longer the bread winner, the head of the family, the last word, the one they could all rely on, the one who would take care of everything. I have been demoted to a dependent level depending on all of those around me.
This is often subtle but is still too real. This is my very deep personal response to who I am and what I am. This may be true of men and not women. It may only be my personal reaction, the wound to my pride of place in life. I am no longer that hot shot trial lawyer in a three piece suit driving his Mercedes. I am just another guy on the bus. I am not the father to be consulted or the husband to be deferred to. I am taken care of instead! God, that hurts and there is nothing I can do about it. Thank God there are those who do care and are willing to take care of me!
It ain’t no fun having this disease. It is nonetheless livable. I told a guy at a class when he commented the worst he could ever face is getting Alzheimer’s. I popped back, “Oh Howard, It’s not so bad having it as worrying about getting it.”
This has been my lament of losses. I have AD. It has caused me countless loss. When you stop and look at life particularly from my view point you realize nothing in life is free. Be happy with what you had, with what you were, with what you did and then get on with it. Make the best of what you have now. That’s the ticket!
To foil the view of my wife and doctor and show them how wrong they were I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably. It was all downhill after that.
After many examinations ending in a Neuro Psychometric test of some four hours I was diagnosed as having an A-Typical Alzheimer’s. They explained it was A-Typical in that my memory was pretty good. But there were other faults. These deficiencies suggested damage in the front and right side of the brain. This affected my ability to multi-task, in what they called executive functioning and in my peripheral visual perceptive ability.
The perception deficiency explained why I was screwing up driving, why I was falling after tripping over things in plain view. The rest explained why I couldn’t handle money or bank accounts, couldn’t keep up in work and in social settings. It explained why I could no longer handle stress.
For 43 years I was a successful trial attorney, ran a decent sized law office and was skilled in the trial of cases. A lawsuit calls on great deal of skill in multi tasking. I could keep countless balls in the area, try a complicated case, manage my office, supervise the sixteen lawyers working for me and be the primary rainmaker for a firm handling cases nationally.
That was then this is now. Could I do that now? Not a chance. All of the skills I had to do what I did are gone. That is one loss of many that comes with Alzheimer’s Disease (AD). There are so many others.
I was diagnosed as Early Stage at the age of 69. This diagnosis came out of the blue, without a warning, I was completely blindsided by it. Once the diagnosis was made I was able looking back to see it developing with me over a period of time. That period it was in development explained many experiences I was having. I noticed I was not performing as well as I did usually. It took me more time to do things whether at home or at work. I was uncomfortable in social settings, could not keep up in conversation. There was so much about which I could not keep up and was constantly tired out and frustrated trying to do so.
I had a sense of relief when I got the diagnosis. This explained why I was falling behind, why I was in such stress in a social setting, why every thing became so hard. I was relieved, it was something I could do nothing about and it made no sense to keep trying. It was a kind of surprise when this happened things started to get easier.
As an example: I always found public speaking easy and enjoyable. In the years leading to diagnosis I found I no longer liked to speak publicly, I found it painfully stressful. I first told the folks at Alz.Org in Minneapolis when I volunteered that I could not do any speaking. I did have occasion to speak about my Alzheimer’s to a group and was pleasantly surprised how well it went and how enjoyable it was. After my diagnosis and relaxing a little my impediment over speaking went away.