Alzheimer's    It's really just another way to die.

I’d like to read a short segment of an article I found last week in Time Magazine. It was the April 2001 issue.

Dr. Sherwin Nuland, in his book "How We Die," offers this description of a man in the late stages of Alzheimer’s

…urine soaking his clothes and smeared sometimes with his feces, he would have to be undressed to clean off the filth that profaned the pittance of humanness still left to him."

His wife Janet goes on to make this comment…

"It is such a degrading sickness!"

The above two quotes are typical of the way in which our people are constantly dehumanized.

• One has to wonder if Lou Gehrig’s hygiene problems, as his ALS escalated, were ever described in the terms dumped on Janet’s husband.

• One has to wonder if Christopher Reeve was ever subjected to that level of disgust when his hygiene needs became apparent after his accident.

• In fact, one has to wonder why Janet’s husband’s poop is so much more a profanity than Mr. Gehrig’s, or Mr. Reeves, or Morrie’s for that matter. If’ you’ve read Tuesday’s with Morrie, there is a particularly poignant discussion of just that event in his life.

• Most of all, I have to wonder if the Time’s article would have had a different tone if Mr. Rosenblatt’s his mother had died of ALS or Cancer.

I ask these questions:

Is it more degrading to die of Alzheimer's or is it more degrading to have been reviled, disregarded, disrespected and abandoned?

Or...

Does the nature of this illness mandate more effort on our part to love, unconditionally, the person who is actually doing the dying?

Frankly, I got sick of the portrayal during my tenure as Tom’s Caregiver and wife. It pains me that our dying are viewed with less respect than trees.

Alzheimer’s more than any other impels people to reduce the worth of those who get it from the moment of diagnosis.

As an aside: ALS leaves people as debilitated and helpless as does Alzheimer’s but they keep their ability to think until the moment they die, and that is the major difference between the final days of ALS and Alzheimer’s.

My friend Maddie’s husband died of ALS. When Jason’s system shut down and Maddie was told she had to stop feeding and hydrating him or his death would be harder on him, she still had to explain to him he was dying and help him come to terms with that before she could even begin to come to terms with her own grieving.

I say thank god for small favors. I was spared that when Tom died.

• Incidentally Jason had been using a feeding tube for years, which Tom did not need. He didn’t lose his swallowing reflex until a few days before he died.

• He was chair bound and bed ridden for years.

• He was incontinent for years.

• He was as emaciated as Tom when he died.

Alzheimer’s is just another way to die it is not the ignominious death so readily portrayed and accepted by the world at large as fact.

Our people deserve better than that. They deserve more respect, and they deserve more reverence. The fact that they lose the ability to communicate should not delegate them to the discard heap of death that presently exists for these people.

Our people not only live a useless life once they get Alzheimer’s, they also die a pointless death.

I am hoping this talk will start you thinking about how this illness is portrayed and how it affects the quality of care we give and the quality of care our people receive. That can’t even begin until we recognize the bias that surrounds this illness and question the knee-jerk reaction we the people seem to have towards it.

Mind you, Alzheimer’s is a horrible disease, but then my father died of cancer and that wasn’t any picnic either. Life is tenuous at best and if we didn’t learn that on September 11, we’ll never figure it out.

Tom had been in a car accident in 1985 resulting in a closed head injury that probably triggered the early onset of Alzheimer’s. We married July 10, 1986 at Marble Collegiate Church in NYC knowing we were facing a very uncertain future, but, he was … to put it simply the love of my life and there was no way I could allow myself to walk away, even though he gave me the out.

If people ask me why I would marry someone with the dire predictions we faced, now that we’ve been through it all, you can imagine the looks and unasked questions people concerned themselves with when we announced our intention to marry. Even Dr. Arthur Caliandro, the minister at Marble called to talk to me about my intentions.

"Do you know what you’re getting yourself into?"

"Yes".

"Have you considered that Tom’s condition might worsen?"

We talked about the meaning of commitment, and vows and unconditional love as well as fear of the future and fear of failure. But then Tom and I had already talked about those things and I must say I went into this with my eyes wide open. I may not have had a clue as to what was actually going to happen but I was determined to make the best of it, as was Tom.

It was Tom who encouraged me to write this book and it was Tom, who unwittingly, gave me the title. The words not only expressed his own frustrations at his losses but they expressed how both of us were treated by those who witnessed those losses. My experience ultimately belied the rhetoric about this illness and that is what I tried to relate in this book. This is the book I wish I could have read when Tom and I started on this journey.

In order to graphically hold the reader to the task viewing this story through the eyes of love, I began each chapter with the lyrics of our favorite old love songs. The poetry expressed in the songs speak to a time when commitment, unconditional love, and sacrifice were thought to be positive qualities. My experience with Tom proved to me that those qualities still have a place in our lives and their power to strengthen in times of great need should not be underestimated. Ours, after all, was still a love story.

I was interviewed by Elena Michaels, host of Health Beat, on KBET, Santa Clarita, CA., shortly after Tom’s death. She asked me to talk about the hardest thing I had to deal with in Tom’s care.

She said after the interview that she expected me to talk about how I felt when he couldn’t identify me any more…

She was taken aback when I spoke of the overt bias we experienced and how debilitating that was for both of us.

I had spent 25 years dealing with public attitudes towards the handicapped during my career as a Psychiatric Rehabilitation Counselor.

• I was there before the laws on discrimination were enforced.

• I was there before buildings and public transportation were handicapped accessible.

• I fought for jobs and training for people facing major life changing experiences with a public that was largely indifferent to their rights and their needs.

I know about the collective fear the public feels towards those who are different from us, and how lack of education and experience turns that fear into rejection of those who need acceptance most. I thought I had seen it all.  I hadn’t.

The loss of cognitive skills brings with it an assumptions that the care needs aren’t only impossible to accomplish, they are also an unrewarding effort for the caregiver. And there is something inherently wrong about those assumptions.

And with those notions comes a litany of statements, uttered as basic truths, but which in reality are little more than cliches based in bias, and not in reality. Statements such as:

The care is too much of a burden.

Why make such a needless sacrifice?

Eventually, your person will have to be institutionalized.

Your behavior is co-dependent and 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.

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: 

 "Why should it matter who does the care when they don’t even know who you are anyway."

Of all the issues facing me during the 10 years I cared for my husband at home,

…….stands out as the most asked question.

It was asked by professionals, family, friends and uninvited strangers, sometimes in parking lots and supermarkets, often with Tom standing right next to me.

It was as if… Tom’s inability to identify me marked the end of my being expected to care about him. For most it seemed to mark the point where he should have been put in a nursing home.

It was as if… Tom became this ‘thing,’ this appendage unnecessarily attached to me, a ‘thing’ already dead before his time, a ‘thing’ unable to feel happiness, fear, rejection, loneliness, or grieving for his own losses. Only, he felt those things all too keenly and for much longer than most realized.

It was as if… Memory loss was the only symptom anyone knew about and in fact, it was the only symptom the majority of people did know about, an impression constantly reinforced by the very sources we turn to for information.

And frankly speaking, as long as the bias about this illness continues unquestioned and unchecked, then it doesn’t have a prayer of being eradicated. Why spend money on a population as worthless as ours?

I ask you, does the Rosenblatt article inspire you to take action? My reaction, was more one of pity. Pity for him and pity for his mother.

Because so many of our friends and family fled from Tom before the real care needs of Alzheimer’s manifested themselves, they had in essence escaped the opportunity to witness the real disease in action as well as the humanity and essence that remained a part of my husband until he died.

And, because it wasn’t witnessed, it wasn’t believed to be possible. And all of that disbelief was wrapped up in that question…

Those words came to epitomize the bias towards my husband’s disease more than any others spoken to me during the last 10 years of his life.

While I know full well why the question was asked I also know how it made me feel.  

It made me feel inadequate, as if my sanity was questioned.

It made me feel as if I was being judged.

It made me feel angry at the insensitivity I had to deal with on top of losing my husband to this disease.

It made my job that much harder because it tended to isolate me.

I really got tired of answering that stupid question.

It was like being tormented by a flock of pecking birds at times. And when he died and people discovered I had managed to maintain him in his home throughout his entire illness, they still felt the uncontrollable need to ask, even in the circumstance of his death and my mourning…."Did he know who you were?"

Even in my grieving I had to defend his right to die at home. Those words will be branded on my brain until the day I die.

For my effort, and during the 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 group leader felt I was a negative influence on the rest of the members. She told me I made other caregivers ‘feel guilty.’ I want you to know that I felt the dismissiveness of her rejection down to my very soul.

I can almost understand why I was pushed out. 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.

Unfortunately, my experience is not uniquely mine, I am hardly the first caregiver to be driven out of a support group, in fact I know I’m not. However, most of us quietly steal away never to return again once we realize our needs aren’t being met. One just has to look at the attendance records to know what the turnover is like.

The problem with the leader of our group is that she seemed to ascribe to the image presented in that Times article I quoted. Finding help and ways to deal with the illness only prolonged what seemed to be the inevitable choice to her…Nursing home placement for people who were too much of a drain on their caregivers. People who didn’t even know who their caregivers were.

I, and the many other home caregivers who left this group, were a threat to the status quo. My last meeting was the week Tom died. It was a sort of "I’m sorry Tom died, but I don’t want you here any longer, kind of good bye. Several weeks later, a number of other ‘trouble makers,’ like myself, approached me and asked if I would lead a breakaway group. We’ve been meeting for almost 6 years now.

Unfortunately that support group leader didn’t stand out as all that unique. She was one of too many, unwilling to challenge their beliefs about this disease. If the prevailing belief is that our people belong in nursing homes, then issues like lack of services, and respite, and techniques for keeping our people home as long as possible don’t carry much weight. Issues about their humanity, their needs, their wants are also dismissed as relevant.

It is so much easier to characterize those of us struggling to keep them home as disruptive, codependent, unrealistic, and on occasion, potentially abusive. And once those attitudes are in place, well, to be a caregiver to someone with this disease is to invite a psychiatric diagnosis.

• 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 our professional helpers see us as crazy for taking on the burden of this care.

Did I ever receive encouragement or empowerment, or endorsement of my efforts?

The answer to that is, "Hardly ever!" Everyone outside our rarified existence anticipated nothing but doom and gloom about Tom’s care and when I didn’t assume the position of victim, I made a lot of people feel uneasy. My feelings were apparently up for grabs because I presented a strong, in control appearance, which was probably more bravado and New York City affect, than anything else. I also refused to see myself as a victim and I refused to degrade Tom to accommodate those who lived on the outskirts of our life.

In all fairness, everyone was so afraid to tread on the feelings of those who made the nursing home choice, or who might make the nursing home choice, that to encourage home care was to somehow pass judgement on those who made a different choice. Home care on an extended basis was almost as taboo a subject and incontinence care, yet another signal to institutionalize.

The truth is that very few, care to examine the rhetoric used to describe this illness.

• The public wants to believe that the care is too hard

• They want to believe in this particular burden of care.

• They need to believe that those of us who get past those beliefs are extremists, martyrs, and co-dependent.

It makes it easier for them to detach themselves from the basic fear they have of their own mortality. And Alzheimer’s points out, more than any other illness, the depth of vulnerability we face as humans. To lose our ability to think sets this apart from every other illness in terms of defining our worth as human beings.

And underlying the Out of Sight-Out of Mind approach to counseling is the ever present battle cry: After all, why should it matter where the care is done,

What is screamingly absent from the rhetoric is this:

No one, ever talks about the beneficial reasons to keep someone like my Tom home, and that continuity of care and familiarity with his environment might help his orientation and perhaps give him a better sense of security and comfort. 

No one, ever talks about the intrinsic values caregivers can experience, such as empowerment, spiritual growth, and personal enrichment, or of the love and joy that is still there to share. 

No one, with the exception of hospice, and some family members ever spoke of the primeval need for me to share in Tom’s last days. To assist in the rituals of death and tend to the body is highly under-rated in our collective culture and possibly a missing but necessary part of our own development as human beings. 

No one, except for those who have been through Alzheimer’s, understand how debilitating it is for our people to be written off, and how demoralizing that is. When I spoke of Tom’s ability to communicate his feelings in spite of severe language problems and loss of thinking process, the response ranged from one of condescension, to benign neglect, to outright ridicule.

And, last but not lease, No one, once Tom’s communication skills slipped, ever talked about my husband as if his wants mattered anymore. It was certainly obvious, that he didn’t matter anymore.

So, I ask,

Does reinforcing all the negative aspects of this care help us caregivers much?

Personally I don’t think so.

The only purpose those negative attitudes served was to encourage me to ignore Tom’s wants, needs, desires, and the history we shared.

• Debi and the Restaurant I can’t help but wonder if this person would have approached Mrs. Christopher Reeve, had she seen them in a restaurant, or my friend who’s son died of Muscular Dystrophy. He was 21, in a wheel chair, and the only part of his body he had control over was his index finger. He was on a respirator and he was in college. Just for the record, his professor told me at his funeral, the grade average in the classes he attended were significantly higher than those he was wasn’t in. He was an inspiration to everyone who came near him.

• Marilyn: I’m Crazy, I’m Catholic, I’m Italian and I’m from Boston.

Aside from anything else she couldn’t afford nursing home care even if she wanted to place her husband in one. It was cheaper for me to hire in home help a few hours a week than it was to place Tom permanently.

Everyone wants to see us get on with our lives, and get our obligations over with, and get back to being happy.

• Debi and the friend at the party.

• What can I do?

• Encourage her, tell her you admire her, send over food, volunteer to spend an hour or two once in a while so she can go out.

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.

"You find an adult child taking care of a parent with Alzheimer’s Disease and you find the unfavored child, the one who was overweight, unpopular, who is still overcompensating for feelings of inadequacy and a lack of love from that parent. A child who is still trying to gain favor and a sense of self, a martyr."

I ask you: Why is this adult child, who has taken on the awesome responsibility of care for a parent, an object of public ridicule?

Better yet: Why was everyone’s head bobbing in agreement over this profanity?

His comment was a graphic demonstration of the overt lack of value perceived in caregiving for our people. There was more to his talk but I haven’t the time to go into all the nonsense he proffered. One thing was apparent, nursing home placement was the good choice and home-care was the bad choice, 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.

The point I’m making is that none of these choices are easy. NO one should be dismissed because of the choice they make.

And as an aside I wish people would stop telling caregivers to "not feel guilty" when they make these choices. That phrase seems to spring to the mind of too many who stand on the outskirts of the caregiver's life, as if that is the only explanation for any and every emotion the caregiver expresses.  

Personally I think those who make the nursing home decision suffer more from unacknowledged grieving issues and post traumatic stress issues than guilt.

It is a fact that people who survived the death camps in WWII, and soldiers who survived battles in which their buddies were blown up in front of their eyes experienced waves of stress after the fact. They now call it post traumatic stress. My heart goes out to those who survived September 11 who now feel exactly the same about co-workers who didn’t make it. Our caregivers experience a similar reaction. That reaction is many things but it isn’t guilt and it shouldn’t be defined as such. That word has no place in the counseling language because its use does little more than shut the door to any significant dialogue.

• Caregivers are people who are dealing with regret, feelings of failure, of anger, of grieving, of abandonment.  

• They suffer from a vague indefinable sense of wondering if they could be given more respite, more tools, more encouragement, more help, perhaps they might be able to keep their person home longer. The lady in Canton Ohio.

• They wrestle with vows and obligations and promises they may not be able to keep.

• They are painfully aware that money defines who can and who cannot afford help at home and for vast numbers the cost of nursing home-care leaves caregivers literally trapped at home regardless of their preference in care. Not everyone qualifies for Medicaid, and it helps to know that before you tell someone their person belongs in a nursing home.

• They live in homes, the structures of which make home-care exceedingly difficult if not impossible and they don’t have the funds, the energy or the ability to make it user friendly to our people.

• They have family members and friends who have a great deal to say about how they do the job but who also abandon them during their greatest time of need. As one caregiver said to me, if you’re so concerned about my health then get your body over here once in a while so that I can get out and "do something for myself."

• They are inundated with nothing but negativity and reinforcement of a bias that many just aren’t able to question let alone fight. 

• And they also deal with a feeling of relief that is very difficult to admit let alone integrate, a feeling that goes hand in hand with getting a good night’s sleep after making the nursing home choice and knowing they have also begun to say goodbye at the same time.

And for what it is worth, those who make the nursing home decision are far from removed from the continued care of their family members as demonstrated by my friend Margo. In many ways the care becomes more demanding, more involved because it is removed from the home.  

It isn’t as if you just drive them up and drop them off and you are ‘off the hook.’ And the dismissal of all those complex feelings comes back to unexplored bias about this disease.

What concerns me is that the new crop of caregivers are just as unsuspecting of what they will face from the public as was I.

We must be allowed to grow into the job of caregiving the same way we grow into the job of parenting and like new parents we need expectations of success if we are to succeed. And while becoming a new parent carries a sense of joyous expectation with it, taking on the challenges of our elderly and most specifically family members with Alzheimer's brings sadness along with the built in fears...

...of change

...of the future

...of our ability to do the job

None of us expect to come out of this experience strengthened, but that is what can happen if we are allowed that luxury. We face our demons and we prevail if we are insightful enough to view this experience as a continuum of life, as preparation for our own parting, and not as some mindless form of retribution hurled at us from an uncaring God.  

And that can’t happen until the realities of this disease are put into proper perspective.

Once and For All

Alzheimer’s is not about memory loss. It is not about forgetting anything.

It is about progressive, permanent, brain damage that affects every function of the brain until it dies.

And when the brain dies we die.

• Memory is dependent upon the brain’s ability to organize, retrieve and relate all the information it receives. That function of the brain is among the first assailed by this disease. Once compromised, our people are unable to find the information that is still in there or utilize it effectively.

• In the process recent and long-term, ‘old’ memories become muddled. The destruction of the brain moves through all the cognitive abilities.

• The subconscious memory loses the ability to distinguish dreams, and past events from the present experience. Hallucinations occur.

• Rote memory fails which allows us to speak, dress, and function physically in the world.

• The loss of unconscious functions that regulate respiration, digestion, blood pressure, etc., follows.

• When Tom died he weighed less than 100 lbs. because his brain stopped telling his digestive system to glean nutrients from his food and unlike many Alzheimer’s people he ate full meals until the week he died.

• He was in the fetal position because the brain stopped telling muscles that pull limbs straight to work in opposition to those muscles that pull limbs in.

• the immune system is compromised, and the person dies.

• Alzheimer’s Disease is probably the only illness that can be described as being the opposite of birth. * Our brain houses everything we learn and experience from the moment of birth until we get Alzheimer’s and then the process begins to reverse itself. The top layers of learning/memory will be the first to go and we will recede through our abilities one by one until we need the same level of care as a newborn infant. Dr. Barry Reisberg who developed the Stages of Alzheimer’s, was one of the first doctors to devote his life to this disease. He has gone so far as to compare the early development of children to the last 12 years of Alzheimer’s. I have included a copy of that graph for your information.

The first thing a baby develops is the instinct to bond and to feel. They don’t need to attach words to those feelings for those feelings to be valid. Children become adept very early at reading body language, tone of voice, manner, attitudes and that skill is the last to go in the brain.

• The fact that our family members lose the ability to communicate should not diminish their inherent rights as human beings for basic regard. Their inability to identify us is a result of brain damage and not personal rejection of the people around them. 

• In terms of recognizing us, most of us get past that aspect rather quickly because it happens to coincide with other more pressing matters such as incontinence, wandering, pacing, sun-downing and all the other behaviors that occur in the mid stages of this disease, all of which results from the continuing brain damage. In comparison, your family member’s ability to name you almost seems inconsequential.

• Our people know us in ways that are less tangible than ordinary conversation.  They know us the way a newborn knows who its parents are. Long after the ability to communicate is gone the person will still translate their environment through sight, smell, body language, inflections in voice and tone, the same way a small child knows who to trust .

And so, instead of explaining to them that you are their husband, or son, or wife, or daughter, or long time friend, perhaps what you need to do is express love and acceptance to them and acknowledge that life is different now

Your expectations of someone with this disease have to change. To walk up to your person ‘cold,’ drop your name, and then feel rejected by their lack of response is really little more than arrogant. It is also a little cruel. It is a test that sets the Alzheimer’s person up to fail and it inflicts a great deal of stress on them. So what if they can’t rattle off your history in their lives at the drop of a hat!

• Does the visit or the task you are performing carry less meaning?

• Does approaching them with regard and acceptance carry fewer goody points because they can’t thank you or respond in a socially accepted way?

• Is it necessary to walk away from the encounter with less of a sense of yourself because you weren’t identified properly?

We don't lug this sort of baggage around in our relationships with infants and toddlers and it isn't necessary to inflict it on those with Alzheimer’s Disease. I have a new grandchild. He lives in New York, I live in Boulder. He is not going to know who I am for a very long time. I will not be the familiar I was to my other three grandchildren who live in Boulder. At least not as soon. Will he respond to my love, when I get my hands on him after this talk, my caress, my care, the adept and loving way in which I change his diaper and sing to him. Of course he will. He will learn to identify me the same way Tom knew who I was when he lost the ability to communicate through language.

This is indeed a sad thing to witness in a friend or relative, but it is a milestone in the deterioration that will happen if your person has this disease, and it doesn’t have to portend the end of your relationship with that person. 

In conclusion I’d like to talk about the dying.

Years ago I thought about becoming a death and dying counselor. I went so far as to do some study under Elisabeth Kubler Ross. I changed my mind because.. To be very frank I couldn’t stop crying. One of the things that stayed in my mind was that most of us choose the moment of death.

• The vast majority of us leave in the wee hours of the morning when family is asleep, or the staff is sparse to save ourselves the long good bye.

• Some of us will linger for days until the entire family gathers and then expire within moments of the last arrival.

• Some of us will linger until we are given permission to go.

But these things happened to people who died knowing who they were and who their families were.

If it is true that our people have lost the ability to think, and to know who we are, then how is it that these same patterns of dying seem to occur in startling numbers amongst our people?

It occurred to me that the soul doesn’t get Alzheimer’s any more than the soul gets Cancer.

 

This book started out being our story, but the reality is that it ended up being mine. I will never be the same as a result of this experience. Something unexpected happened to me as a result of the journey Tom and I embarked upon when we married, because I am a more centered and complete person for the experience. …If asked if I would do this all over, knowing what I know now. I have to say I wouldn’t have missed Tom Murphy for the world. He’s given me more than anyone could imagine.

..........and people wonder why I am still smiling.

So when asked if Tom knew who I was when he died, I respond…

Tom died knowing he was loved. And that is all that ever mattered to me.

*Oliver Sacks, relates the following case study in his book, "The Man Who Mistook His Wife For A Hat."

Jimmie is a 49 year old man with Korsakov’s Syndrome, an organic brain condition which erased part of his memory but otherwise left the rest of his thinking process intact. His memories are cut off at 1945 when he was 19. His amnesia of the present is so complete he is unable to reconstruct his history since 1945 or retain any events that happen daily and he is literally frozen in time. He has no recognition of his doctors even though he sees them every day. He is constantly perplexed by the changes he is constantly faced with. He recognizes his brother but can’t understand why he looks so ‘old.’ Familiar facial features, voice patterns, and body language facilitate recognition and in a sense he ‘jogs’ his memory before he can accept the person standing before him as his brother, a process he repeats on every visit.

Comparing this form of brain damage with Alzheimer’s disease might raise some eyebrows. However, in my mind, brain damage is brain damage regardless of the cause and this case study helped me see my husband’s problems in a different light.

The separation of our people from their present in the early stages of dementia is similar in that their clearer memories of people and places will be as they existed in their past. Their present is fading from memory, and like Jimmie’s affliction, it cannot be reconstructed.

• A wife can’t ‘find’ the bathroom on her own because the space is not a part of her new memory and is unfamiliar to her.

• She can’t operate the tub fixtures safely any more, or get in or out of her clothes because her rote memory is impaired.

• She is reluctant to bathe in front of her husband, and more reluctant to use the toilet in front of him because her mind no longer holds him as the 75-year-old man she’s been married to all those years. Instead, her real image of him is as the 25-year-old she married and she has trouble reconciling the difference in his appearance. He may not be perceived as a stranger, per se, but he may indeed seem strange. 

• She fluctuates back and forth between recognition and fear depending on the level of stress she is feeling. Vague imprints of her own early toilet training, from her subconscious memory color much of her response,.

• Add to that the embarrassment of having ‘messed’ herself, and being faced with a man, (who resembles her husband, but who doesn’t exactly look like her husband,) who has invaded her private space, and who is trying to take her clothes off, and you have a situation ripe for a catastrophic episode. 

How the husband approaches her at any given moment of the day or night has to influence her behavior, and how can he exhibit any sensitivity to this situation if he has no understanding of what she is going through? Remember, he too has been inundated with images that portray his wife as being beyond caring about.

Better yet, how does a service provider help this man understand the ramifications of what is transpiring, when they don’t understand the ramifications of what is happening themselves? They don’t even understand why he still has her home. As many caregivers have found out, casual observers can easily misinterpret the whole scene as one that is abusive. And once that label has been levied, well, many get to experience another sort of hell in their lives.

Merideth…