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Bias  and  Alzheimer’s  Disease 

I spent a great deal of time dealing with public attitudes towards the handicapped during my career as a Psychiatric Rehabilitation Counselor.  I thought I had seen it all.  

After sharing my husband, Tom’s, experience with Alzheimer’s, I realized I hadn’t.  A couple of years after my husband’s death from this disease, Elena Michaels, host of Health Beat, KBET, Santa Clarita, CA., asked me to talk about the hardest thing I had to deal with in Tom’s care.  I believe she expected me to talk about some particular phase of the disease, most assuredly the moment when he could no longer identify who I was and how I felt about that.  She was intrigued when I spoke of the overt bias we experienced and how debilitating that was for both of us.

The loss of cognitive skills brings with it an assumption that the care needs aren’t only impossible to accomplish they are also an unrewarding effort for the caregiver, which seems to be proof enough to justify the termination of care. The feelings of the person with Alzheimer’s aren’t even entered into the equation because, and I will be repeating this statement often to emphasize the hollowness and the superficiality of it:  

That statement denies our people any semblance of human dignity or basic consideration, and it is nothing less than the expression of bias, a bias so pervasive, it isn’t even perceived as bias.  I believe that one statement exists as the rational behind all the bias that surrounds this disease and behind that statement lurks all the other negative responses so ready on the lips of those who give us advice on our care choices.  Unfortunately, the language that is being used to work with our caregivers has been reduced to sound bites, clichés, packaged response and mindless ramblings that really don’t address the complexities of giving care to someone with this disease. 

Statements such as:

The care is too much of a burden.

Why make such a needless sacrifice?

Your person belongs in a nursing home.

Your behavior is co-dependent and/or   unrealistic.

You should get on with your life.

It is so difficult watching him lose his dignity.

She would never want you to change her diapers.

I can’t imagine these comments being thrust upon any caregiver dealing with Multiple Sclerosis, or ALS, or a Spinal Injury such as the one Christopher Reeve suffered.  To say such things in the presence of someone who can still think and reason would be unthinkable.  But we Alzheimer caregivers are subjected to this hurt constantly, and our people hear it blathered about in their presence as if their feelings really don’t matter. Unfortunately, as is often the case, they understand all too well.

The horror of it all is that most families don’t expect this onslaught of insensitivity and they actually buy into it because it is the only offering they get. In a very real sense their own bias about this disease sets the stage and their unresolved fears are constantly confirmed by the bias their authority figures (doctors, service providers, family, friends, the media), bring to the mix, a majority of whom have never done the hands on care of anyone with this disease.  And so, to a large degree, we caregivers are carefully schooled on the fears of those who live on the peripheries of this disease.

Too many see our job as caregivers as a thankless one and these opinions are telegraphed in every way imaginable.  Even uninvited strangers seemed to feel they had the right to tell me Tom belonged in a nursing home while I was getting him in or out of our car in a parking lot.  It was as if Tom's mere presence was an affront to their line of vision.  Our people are barely tolerated as being human even though the attempt is made to disguise these feelings with sad looks, attempts at hugging, and questions about how ‘we’ are doing, as if the dismissive attitudes expressed towards our family members don’t also reflect on us.  

This is the only disease in which caregivers are encouraged to give their care up to others almost from the moment of diagnosis.  And I do understand why the public feels so negatively about the people who get this illness, the same reasons they feel negatively about any illness:

A clear indication of this is reflected in how the media traditionally portrays our people.  The media demonstrates nothing less than the revulsion the culture feels towards this  group of humans.  And they are fairly safe in this endeavor since these people can’t speak for themselves let alone complain about the discriminatory way in which they are portrayed.  With perverted images imprinted over and over on the public, why should anyone stop to consider the sanctity of the role of our caregivers and the inherent dignity of our family members?  

• The media not only manifests the bias associated with this disease, it has continuing impact on keeping the bias alive and well.  

• Many of the dramas not only rely on a misinterpreted assumptions about this illness, in many cases they just make up the symptoms as they go along.   I am reminded of the Alzheimer's character on L. A. Law who dressed up as Ralph Kramden and spouted dialogue from "The Honeymooners," every time his "Alzheimer's kicked in."  

• Most characters are euthanized as if that is the only reasonable solution to the long-term care needs of people who lose their thinking process, something most police departments still define as murder I might add.  

• As for their caregivers, they are almost always portrayed as victims who become survivors once they institutionalize their person or blow them away to boost that ‘rating’ thing.

What other group, with the exception of homicidal maniacs, rapists, and pedophiles are we allowed to kill in prime time and boost ratings at the same time?   In the case of the later group the killing is for the good of the community, in the case of those with dementia it is for their own good and the good of the caregiver.  Oh they try to couch it in terms of mercy killing with sappy rhetoric and all the usual clichés that have attached themselves to this illness but, all they do is express their total disdain for the human needs of those who get this disease and the millions of family members trying to maintain a semblance of dignity in their desire to provide for them.

Never is an Alzheimer’s person portrayed as someone deserving of love in spite of the disease.

Never is the option of maintaining them in their own homes ever approached in positive, problem solving terms and yet over 80% of the care is done in the home and vast numbers are maintained in their homes until they die. 

Instead of outrage at the dismissive way in which our people are portrayed, we sit and nod numbly in agreement as if some very basic truth has been uttered. After all, ‘they’ don’t know who we are, and cleaning up all that poop is awful, and there is all that crazy behavior; and last but not least, ‘they’ would rather be dead anyway. The Alzheimer’s person is treated as a non-person with no say, no will, no memory, and no worth and their only function is be a burden on everyone. This appears to be some sort of universal truth to anyone who hasn’t had an opportunity to witness the little joys that exist in spite of what this illness does to our people.

The sad thing is that we caregivers, even if we recognize the onslaught for what it is, are systematically beaten down.  How can we muster the energy to take on a world of public opinion when we are so inundated with the very real care issues facing us while we take care of this object of derision?  And those of us who do recognize the wrongfulness of these attitudes learn very quickly that to challenge that bias, to question the rhetoric, to demand something other than empty clichés, when what is needed are practical options for very real care issues, is to not only to swim against the tide, it is to set oneself up for sanction.  You find yourself in the untenable situation of declaring that the Emperor is indeed naked

For my effort, and during the 10 years I cared for Tom, I was treated like a victim, accused of being co-dependent, manipulative, an extremist, a martyr, a potential abuser, and, I made those who made the nursing home choice feel guilty, which I guess also made me sociopathic.  

I was banished from my support group because the powers that be felt I was a negative influence on the rest of the members.  I made other caregivers ‘feel guilty.’  I tended to use the word ‘challenge’ instead of ‘burden’ when talking of Tom for one thing.  I also refused to see my sacrifice as a ‘needless one’ because I didn’t see my caregiving as being an act of ‘patsyism’ in the first place.  I tried to reach out to others in the group with practical explanations of the why and wherefore of the behaviors they faced and offered ways to see their problems as something that could conceivably be worked with, if that was their desire.  I had 25 years counseling people facing life-changing challenges and altering environments for profoundly handicapped people, I had taught on a graduate level in the Counseling Department at City University in New York, and I was perceived as a threat instead of an asset ‘to’ other caregivers.  And please note I say, ‘to’ other caregivers and not ‘by’ other caregivers.

 Unfortunately, my experience is not uniquely mine, I am hardly the first caregiver to be driven out of a support group.  However, most of us quietly steal away never to return again once we realize our needs aren’t being met.

Offering options and positive attitudes to caregivers: 

‘Dangerous stuff in this day and age.’

To be a caregiver to someone who has this disease is to invite a psychiatric classification.  How can it be otherwise?  How can our efforts be perceived as worthwhile when the recipient of those efforts has already been perceived as being without worth?  The worth of the family member has to reflect on the worth of the caregiver.  Instead of being applauded for our efforts, we caregivers too often feel as if we are targets. One thing is certain we can hardly be held up as role models as long as professional helpers see us as crazy.

As an example of how accepted ‘Caregiver Bashing’ is, I offer the words of a keynote speaker I heard at a seminar specifically targeting caregivers of people with Alzheimer’s Disease. His topic had to do with relieving the ‘guilt’ associated with the nursing home choice. This was one of his comments, which I frantically wrote down while he spoke.

I ask you:

Why is this adult child, who has taken on the awesome responsibility of care for a parent, a public object of ridicule and derision?

What purpose can this comment possibly serve?

This comment was a graphic demonstration of the overt lack of value perceived in caregiving for this population.  I can’t imagine caregivers facing any other terminal illness being subjected to this sort of comment because to do so would raise a hue and cry throughout the room in protest over the blatant insensitivity. What I don’t understand is why a hue and cry of protest didn’t echo through our room that night. Instead what happened was a lot of head nodding,  head nodding that came from too many professionals working in this field of Alzheimer’s in this community as well as caregivers who really were being brainwashed by this talk.  I’d like to qualify this statement somewhat.  Some of us still doing home-care got up and walked out and a few of us voiced our objections on the comment cards handed to us as we left.  This was a talk structured to prove that nursing home care was good, and home-care for an Alzheimer’s person was bad.  Obviously, given the tone of his talk, home-care must be bad because only the inadequate and the emotionally bereft do it.

What I don’t understand is why good and bad even enter into these choices.  Isn’t it a matter of who wants to, who can and who does?  There should be no hierarchy over whose choice in care is the right choice.  We don’t need to be pitted against each other, which is too often the result of the discomfort too many of our  ‘helpers’ feel over their unresolved feelings about this disease and which was the real reason I was banished from my support group.  I was viewed as a threat instead of a role model, a sort of Caregiver from Hell who was going to force caregivers to keep their people home whether they wanted to or not.  This wasn’t the only time I was greeted with hostility after people found out Tom was in the last stages of this disease and still at home.

A man came up to me at the White House Conference on Aging after I spoke about the difficulties of caregiving for those with Alzheimer’s.  He identified himself as a caregiver whose wife had recently died of Alzheimer’s.  He asked me which nursing home Tom was in.  When I replied I still had him home he remarked: "He must still be in the early stages."  When I told him Tom had been bed-bound for three years at that point, and  I hoped I’d be able to keep him home until he died, I was greeted with this remark…

"…and what are you trying to prove?"

His hostility was unmistakable. He stood before me as a fit, articulate, well dressed, retired man who was very active in his community and someone who seemed fairly affluent, but that of course is conjecture on my part.  One thing was certain, he was obviously still grieving for his wife and he began to list his reasons why he couldn’t keep her home.  He deeply resented my statement that nursing home care is not the only option for Alzheimer’s caregivers.

I wondered: 

How many times was he told he couldn’t do it.

How many times was he told the care was too hard and that his wife didn’t even know who he was anymore let alone where she would be.

How many times was he told she’d be better off having ‘professionals’ take care of her.

.........before he bought into it?

Speaking about my connection with Tom in spite of his late stage of care pushed his button, and you have to wonder why he wasn’t able to see his choice as just his choice, and why my choice was seen as something he needed to challenge.  I think this man felt cheated of something it was too late to change.  I think he had been denied the expectation of continued connection with his wife.  I think he was still harboring the possibility that, in spite of what he had been told, his wife did feel abandoned, and deep down he felt he had failed her and that made him angry and I was an easy target for anger that might more rightly have been aimed somewhere else.

After all, who better to aim it at than those who are set up as examples of codependency, martyrdom, and obsessive behavior, who nevertheless, in spite of all the obstacles are still doing care at home.  It is we, the stupid and the crazy, who cause their pain.

The irony, if it can be called that, is I had no idea I would keep Tom home at the onset of his symptoms, I certainly didn’t keep him home to make others feel guilty.  My decision to do home care was something I grew into as the years passed.  It grew as I became more adept at dealing with his symptoms, and it grew out of my innate desire to do the best I could do for him even though I admit I had no notion of what ‘the best’ entailed.  

I never eliminated nursing home placement as an option until I realized I had already been through the worst this disease had to offer and reached a sense of comfort in knowing his being home meant as much to me as it had meant to Tom.   And most of all, I was young enough, strong enough, affluent enough and stubborn enough to be able to do it.  We can only do what we are able to do.  None of us enter this job possessing the level of resolve and strength it takes to complete it.  Too often, circumstances, money, opportunities, time, emotional as well as physical strength, and where we live, determine our choices and those are things that are largely out of anyone’s control.  Wherein lies the frustration that surrounds these choices.

If I sound a tad put out, I hope you will forgive me.  I hope you can understand the frustration I still experience watching other caregivers face the same barriers I faced.  The change in attitude about this disease is coming too slowly and it exacts a price at the expense of those who get this disease and those of us who care for them. This aforementioned lecturer had another comment that just about threw me off my chair. He also said:

"Our parents are outliving our ability to care for them."

What horrified me was the head nodding that followed this remark as if some unspoken solution to the problem had been agreed upon.

I was probably of the last generation to see all my grandparents die in their own beds.  I watched the social mores and attitudes towards the elderly change radically since 1940 when I was born.  I was there at the end of World War II, Korea, Viet Nam, the Baby Boom, The Kennedy Initiative, The Johnson years, the Death of Disco, the Reagan years, and the nurturing of the ‘Me First Generation.’

Unfortunately, the ‘Me First Generation,’ fueled by the media, and further encouraged by a plethora of self-help books, and billions spent on therapy, has done little more than turn victimism into a way of life.  There has been a great deal of time and energy spent over the last decades trying to figure out who is to blame for what life hands us.  It was ushered in with the era of protest, social revolution, rejection of the establishment and manifested most insidiously in the form of parent bashing.  While I certainly welcomed social reform I do, however, feel our parents, as a group, got a bad rap.  If students my age, (and I was in my mid-thirties at the time I got my masters degree), wandered through graduate school knowing our parents were less than perfect but basically doing the best they could, those who were 10 years or more younger were blaming theirs for everything from inadequate sex to ingrown toenails.  When you begin seeing bumper stickers that proclaim…

…something significant has happened in the general collective consciousness.

"Bore, Bore, Bore."

 

The bottom line is this: If our parents were incompetent while we were children, what chance do they now have, when they become dependent, when they are no longer productive, attractive, vital, or creative?  The concepts we were once able to turn to in times of need for solace and strength have been redefined, their meanings repackaged. Values like commitment, vows, promises, obligations have been belittled to the point where to subscribe to these things makes you suspect of aberrant behavior.  We have been carefully taught that the only real responsibility we have is towards ourselves and our own wistful expectations of what that means, (some convoluted definition of happiness I expect).  And while we have looked to counseling, therapy, the search for self-enlightenment, self-actualization, and self aggrandizement to fill the bottomless pit of unrequited love we also started dragging around behind us somewhere during this period, what evolved out of all the introspection, in my opinion, were deeper feelings of alienation and aloneness.  Too many of us walk around believing we are owed something by someone, somewhere, for some reason, somehow, and no where are we told that in order to receive love, one must be able to give love.  Giving unconditionally, with no strings attached has its own rewards but then, 'intrinsic reward' is another archaic notion that seems to carry little value in our current culture.

In the process, society has been programmed to see emotional pain as the enemy.  Society not only wants that emotional pain to go away, society doesn’t even want to be reminded that it exists.  Those with Dementia present a very real threat to the ‘Feel Good Society,’ because they are a reminder of how truly vulnerable we all are as humans, and that makes them ‘feel bad.’ They don’t like ‘feeling bad’ so they transfer their feelings to us.  The problem is that they aren’t entirely comfortable with our ‘feeling bad’ either.  'The Feel Good Society,’ really wants our particular brand of emotional pain to go away, and to make us ‘feel better’ they offer us Out-of Sight, Out-of Mind solutions to our problems.  But hidden in all the good advice is the unspoken statement that it is more than all right for us to let go of our commitment, because those with Alzheimer’s Disease have no intrinsic worth anyway.  They are already dead.  After all, "They don’t even know who you are anymore."   And while there are legitimate concerns about the stress of caregiving for someone with Alzheimer’s, Out-of-Sight, Out-of-Mind is really a simplistic solution to the real problems caregivers face.  If there is a motto that developed during this century that adequately expresses how we are to deal with the trials and errors life hands us, it is this:

(Unfortunately, losing anyone you care about to any terminal illness 

tends to make your feel bad).

In defense of the care of our people in spite of what old age and this disease process does to them I offer this alternative reality.  Our entire population resides within the confines of a huge bell curve.  As we age from infant to elder, our position in the curve changes as well.  At one end, we enter as infants, who rightfully need total attention if we are to grow and prosper.  At the other end, we depart as the elderly, the frail, and the disabled who need as much care and attention as we did as infants if our last years are to have any quality.  We move through adulthood within the confines of the middle section and:

We are the fit ones in this curve who are able to care for those at the extreme ends.

We are the ones who are able to give back what we got as children.

We are the ones who have filled this function throughout the history of the world.

We have a quality that sets us apart from other living things and that is a responsibility to do the best we can do for both of these dependent groups. One group is not to be favored because they are at the beginning of their lives and the other group denigrated because they are at the end. There is something to be said for filling the role being in the middle of this bell curve mandates. And, although this middle section also includes…

Those who are disabled themselves

Those who can’t do the care

Those who shouldn’t do the care 

Those who don’t want to do the care

                                                                  …the reality is that even these people are doing the care in great numbers.  And for those who aren’t in the healthiest of relationships but who face the challenges in spite of their unresolved feelings, well, they are really at the mercy of public opinion.  They will be told their person doesn’t even deserve attention let alone their care, as if not giving care is about exacting revenge.  And if people thought I was crazy you can imagine the list of armchair psychiatric classifications attached to caregivers in this category. They feel trapped and they often are trapped.  Lack of services leaves them with few options and if they express their frustrations, they are sometimes rewarded with being labeled as ‘potential abusers,’ which then brings them under yet another form of scrutiny.  They, even more than those of us who have a deep abiding connection with our people, need something more than sad looks and reinforcement of all the horrors this illness brings.

However, and this also needs to be said, I have met too many caregivers who entered their role feeling overt unresolved anger at the family member before them, who unexpectedly found a level of peace in themselves when the caregiving was ended.  Were the issues themselves settled, were amends made, was that pound of flesh exacted?  In most cases the answer was no, but changes sometimes occurred that allowed these caregivers to put the horrors of their memories to rest.  In some instances it was possible to wipe the slate clean and begin anew.  And that might not have happened had it not been for their caregiving.  And that has value!

There is something to be said for being there for someone else without judgment and for no other reason than it is the thing to do. That is what the Golden Rule is about and it must be a part of our cellular makeup because the vast majority of us feel this obligation whether or not we want to take it on, whether or not we even should take it on. If the Golden Rule has any validity, it means that we, humans, simply are not meant to do it alone. We cannot escape involvement with others and be emotionally or spiritually satisfied.  Perhaps we need the experience of giving unconditional love if we are to prosper.  We were not meant to be able to walk away from our obligations and commitments easily and this is not to say that some obligations and commitments don’t bear walking away from.

~*~

The Golden Rule is basic to all cultures. Among many texts that refer to our relationship to our elders, the Ten Commandments order us to ‘Honor our fathers and mothers’. That commandment isn’t qualified by; ‘…until they become incontinent and don’t know who we are anymore’. That tenet impels us to regard them as being worthy of regard.

"Love, honor and cherish in sickness and in health," doesn’t mean "Love, honor and cherish until the going gets rough or something better comes along".

Sacrifice and commitment is not interchangeable with co-dependent, martyr, and patsy.

"The Burden of Care" is a phrase used almost exclusively to describe the care of the elderly. This phrase is tossed off in conversation the way we toss off any other cliché and I’ll venture that no one who uses that phrase takes one second of time to consider the message it sends.

Burden: 1. That which is borne or carried; a load. That which is borne with labor or difficulty. That which is grievous, wearisome, or oppressive; as, my burden is greater than I can bear. The carrying of loads; as, a beast of burden.

"Webster’s Universal Dictionary of the English Language"

~*~

What a really positive, life affirming way to characterize elder care!  In fact, the   concept of elder care, as a burden, has been so artfully packaged we are even relieved of our responsibility in that matter. The justification for rejecting what used to be the normal course of behavior for families, has been transferred to the elders themselves.

It is now ‘they’ who don’t want to ‘burden’ us.

Tom once gave me permission to institutionalize him, however, the permission had been given at a time when he couldn’t possibly envision the horror his life would eventually bring or what being separated from his life would mean.  When that choice became a possibility he fought it tooth and nail.  He made it clear that he wanted to remain in his own home.  Call it pressure, call it what ever you want, but going against his desire was a very difficult thing for me to do.  His desire was summarily dismissed by just about everyone I expressed it to.  No one understood how debilitating that was for me.  

I once had an interesting conversation with a Rabbi I know. She told me that when she hears a member of her congregation, say the words…. "I don’t want to be a burden to my children," she reads past the surface level of that statement because that statement isn’t about permission to institutionalize them at all. That statement is about fear of losing their independence, the fear that their children won’t be able to care for them, and the fear of burdening them with a promise they can’t keep. In many ways that statement uses a negative to ward off the bad luck a positively worded statement would bring. In other words it’s a wish that it won't happen. That is a very different take on what is assumed to be the meaning of that comment.

One lecturer, a doctor of neurology, well respected in his community used the phrase "The Burden of Care," over 8 times before he ended his 20 minute talk to a room full of caregivers and I didn't start counting until I began to hear the word Burden over and over.   I stood up and I offered, that given the trouble my children had put me through as teen-agers, I wasn't so sure about not wanting to be a burden to them.  I think they owe me....  big time.  Everyone laughed.  After the talk I approached this doctor and spoke to him about how demoralizing it is for caregivers to have their efforts constantly described as being burdened.  We need a more encouraging image to see us through this challenge.  To his great credit he thanked me for pointing that out and agreed that this was something worth considering in his next talk.  

I submit that none of us want to burden anyone.  We all live in fear of becoming incapacitated.  With the word ‘burden’ so ingrained in the language reserved for elders, how can we even hope that our care will be anything but a burden?  Frankly, to be incapacitated and thought of as a burden is worse than death.   To be incapacitated and reviled.  I would rather die first.

And keeping that image in mind, can you imagine the impact the diagnosis of Alzheimer’s has on a person who still has enough thinking process to know that to have this disease is to be a burden for the rest of their life? They don’t just get to deal with a disease process while they can still think, they also get to see themselves as nothing more than burdensome to whomever they care about.  If they sense nothing else about the diagnosis, they sense that. And what is just as horrible is that their caregivers get to go home with them knowing they feel this way.  How do you create a life-affirming environment for someone who knows their only purpose from here on in is to be burdensome?  Thank goodness they eventually lose their ability to communicate the memory of that image. 

Unfortunately, the caregiver’s memory is intact. How do we find satisfaction in doing the tasks before us when everyone sees our person as a beast of burden? Obviously, the attitude demeans our efforts.  I think this is something we need to think about and change in the jargon, and the attitudes, that surround this disease.

What is important, and what is too often lost in the labeling is that at the center of all of this is a person who is at the mercy of a terrible disease and families who want to do their best to take care of them. The statistics prove it. In spite of the rhetoric, in spite of all the hype, in spite of all the pressure to institutionalize, in spite of all the elder bashing, the majority of the care for these people is still being done in the home. Adult children and spouses are trying vainly to provide for their people the best way they can. This is a situation in which the rhetoric is disproved by the statistics.

In our current age of the ‘Fragmented Family,’ that implies great numbers of family members making arrangements that involve altering their life styles on grand levels. Not all of us are between the ages of 45 and 60, fairly affluent, able to stay home and not work, with supportive families and the means to navigate a system of care that is largely inaccessible to this disease. And without exception, we all know how hard the job is. We have already figured that out on our own. We don’t need some well meaning do-gooder reiterating that one thought over and over as if we are mentally deficient and we just don't get it!   We need something more than that. We need permission to see our people as human with human needs and desires and rights and to allow our sense of who we are in this relationship to surface and be examined in real terms. Something holds us in these relationships and that needs to be supported if we are to survive intact. Our effort doesn’t need to be undermined by the judgment of those not living our life.

• Our mega-media society has become one which values youth over age, health over illness and the ability to communicate as the measure of our worth. And to state the really obvious, we really value self-toiletting. We have stopped praying for the strength to face adversity. Instead we pray for an effortless life.

• We have to stop seeing the care of our elderly, particularly those with Dementia, as something that’s out of the ordinary.

• We have to stop treating those who face the challenges of elder care as if they have been hoodwinked into doing something no one in their right mind would do.

• We have to find some new words to express the problems inherent in elder care. The language being used to relate to caregivers of our elders has been reduced to a series of empty clichés and faulty assumptions about the actual care needs. The jargon is so accepted its been integrated into the public language and no one challenges its validity.

• We have to recognize that the tasks are doable, as long as the caregiver has the resources and the health and the help to enable them to do it. And the reality is that many are doing it without any of those things going for them.

• We have to re-define the meaning of the word Care Giver. Giving care to someone with this disease may encompass realities that stretch human endurance, but does that necessarily have to degrade the act itself?

• We have to start asking some hard questions about the things we say:

Why is the care a burden?

Why is our sacrifice needless?

Why are our people ideal candidates for nursing home placement?

When did commitment become synonymous with co-dependent?

What does, ‘getting on with you life,’ mean when your person is still alive?

Why are our people less worthy of consideration than those who still have their thinking process?

Why should their dignity be at risk because of a disease process?

Why is their ‘memory’ of us a signal to stop caring?

What is the big deal with changing an adult diaper?

As a caregiver who has experienced sitting on both sides of that proverbial desk, I know it takes a very well trained professional to put aside their own baggage in order to see our tasks as ours, and not theirs. As professionals we all come into this profession bringing our own cultural heritage, our religious beliefs, our familial experiences, our wars, our hurts, our fears, our biases and our losses with us. We have an obligation to leave those things outside of any counseling setting. And I know that those who are doing a good job know who they are. They know the work, the dedication, and the constant preparation it takes to be competent and unbiased in their jobs. And I know that they have found, just as I found through experience and plain hard work that:

• Out of Sight - Out of Mind really isn’t a solution to the complexities long-term care presents to families facing this disease.

• Mindless Clichés are really insulting as a response to legitimate needs for information.

• Unsolicited Advice is the worst form of intrusion.

Like it or not, all of us are going to die someday and Alzheimer’s is, in reality, just another way to die. And while most of us hope death finds us in our sleep, at a ripe old age, with no pain, with all our loose ends tied up, in control of our faculties, and able to wipe our own bottoms, the reality is that most of us won’t come any where near that scenario.  Most of us will need to be tended to before we die and a vast majority of us will need help with our hygiene. Thanks to the Hospice movement, more and more of us are opting to die in our own homes and since the figures of those of us succumbing to Alzheimer’s will only rise as our population ages, I want my wish to die in my own home to be considered, whether or not I can actually say the words myself. I, for one, hope my family gets more than an Out-of-Sight - Out-of-Mind choice from their service providers if and when my care becomes an issue.

If the public at large is going to address these very real feelings they have to at least acknowledge that these issues exist. It has taken me years to understand the evolution that occurred in me, an evolution that is still occurring and I had a lot more going for me than the average caregiver because of my professional training and my upbringing, and, I am by nature a bulldog. Tell me I can’t do something and I will not only dig my heels in, they will grow roots. If taking on the challenges my husband’s Dementia presented was difficult for me I can only imagine what others go through.

• I am not trying to convince anyone to keep their Alzheimer’s family member home if they can’t, and "I can’t do it any longer," is the valid reason to stop, if you have the choice to stop.

• I am tired of the assumption that keeping them home is impossible. It isn’t.

• I am tired of the emotional abuse caregivers endure at the hands of people who mean well.

• I am constantly amazed that so many educators, counselors, and official representatives of this disease feel the need to argue the point that caregivers can’t handle the care needs in the last stages of this disease without even knowing the full extent of what those tasks involved. They make assumptions that the care of a late stage Alzheimer’s person is more difficult than it is for someone who can still relate but who is equally debilitated and who’s care is encouraged at home.

• I am tired of the dismissive attitudes towards those who are unfortunate enough to get this disease.

The things I needed most when I began my journey with my husband, Tom; were practical ways of looking at the problems, new ways to think about them, and permission to continue to see Tom as a worthy human being in spite of what this illness did to him. It is my hope that caregivers, professionals and family members alike will begin to look objectively at the bias that surrounds this disease and begin to question why the resulting attitudes have any place in this long-term care challenge.

Taking care of an individual with Alzheimer’s disease, whether it is in their home, your home, or in a nursing home can be an opportunity to test the strengthening quality of unconditional love. That is a gift that always comes back to the giver, and one that always enriches the receiver.

That, and in this social climate, it takes a certain amount of "guts."

 ©2000        

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