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'Alzheimer's'   

In Reality, it's just another way to die

This summer I picked up an issue of Times Magazine while waiting for a doctor's appointment.  My eye was drawn to an article on the Essay page (April 30,2001 issue) titled: 

"The Disease That Takes Your Breath Away"   by Roger Rosenblatt

It began:  "My mother died last week, 17 years too late, of Alzheimer's disease..."  

It continued:  "The thing about Alzheimer's is that if it lasts long enough, it takes away everything , not only by erasing the person you once knew but by erasing the you you knew too, leaving two carcasses.  When the disease started getting bad, I used to tell myself that while I could make neither head nor tail of my mother's ravings, still she might have been clear as daylight to herself.   When she caved into silence, I told myself she might be harboring pleasant, unexpressed thoughts.  Eventually I stopped kidding myself.  What I saw of her was what I got:  a blank stone in a wall eaten away by rain."

When Dr. Sherwin Nuland's book "How We Die," was released I immediately bought it.  It 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!"

My eyes can't help but dwell on the words in these two passages.  Words like; carcasses, ravings, caved into silence, a blank stone in a wall eaten away by rain, the filth that profaned the pittance of humanness still left to him, such a degrading sickness.  

These are the words being used to describe people like my Tom as well as the family members of everyone reading this web site.

In all fairness to Dr. Nuland, he was writing about a personal friend in that passage on Alzheimer's, but his personal loss of his friend got in the way of an objective appraisal of a death by this disease.  You see, even those who care, who have our ear, who have the training and the desire to help, can't shake off the rhetoric that surrounds this disease.  And what results is a biased debasing of our people.  And those who hear their words and read their words have to buy into it because people like Dr. Nuland and Times Magazine said it.  It must be true.

The above two quotes are only two of the hundreds out there that describe this disease and our people.  And they 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.

• If’ you’ve read "Tuesday’s with Morrie," there is a particularly poignant discussion with Ted Koppel of just that event in his life.  One has to wonder what Morrie's response would have been in the Ted Koppel interview if his approaching incontinence problems had been phrased in the terminology expressed in Dr. Nuland's book.

• 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. 

• Most of all, I have to wonder if the Time’s article would have carried a different tone if Mr. Rosenblatt’s mother had died of ALS or Cancer.  My father died of cancer.  He was totally incapacitated by his disease in the end.  I remember hating what Cancer had done to him.  I don't remember hating him because of what the disease did to him.  Mr. Rosenblatt's imagery is nothing I'd want strangers to associate with anyone I cared about.

  ---

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?

And

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 am sick and tired of the language used to portray out people and this disease.  It pains me that our dying are viewed with less respect than trees.  Alzheimer’s, more than any other disease, impels people to reduce the worth of those who get it from the moment of diagnosis, a subject I go into in much more detail in other articles listed in the ethical issues section of this web site.

Is Alzheimer's a worse way to die?  Let's not only consider that let's compare Alzheimer's to ALS, yet another worse way to die.

ALS (Lou Gehrig's Disease) leaves people as physically debilitated and helpless as does Alzheimer’s but people with this illness keep their ability to think until the moment they die.  They are unable to speak or move but their mind is still intact, and that is the major difference between the final days of someone with ALS and Alzheimer’s.

Tom:

When Tom died his 6 foot frame had reduced in weight to under a 100 lbs. because his system had stopped absorbing nutrients from his food.  His body had curled into the fetal position because his brain had stopped telling his body how to move and atrophy set in.  Six days before he died he contracted the flu and lost his ability to swallow even liquid.  

Tom's system was shutting down and hospice told me that to continue trying to feed him would only contribute to his discomfort because his system was no longer processing the food.  They explained what his death would be like, how long a time frame to expect before he died, and how his body would slowly shut down.

Jason:

My friend Maddie’s husband was in the last stage of ALS.  Jason had been using a feeding tube for years, an option he opted for because his loss happened fairly early into his disease and he was still able to be a part of the decision making process.  For years, once every month, Maddie met a group of women at their church where they cooked, pureed and bagged all of Jason's meals for that month.  In this way Maddie was able to insure the quality of the food being fed her husband.  It was also a way to keep him a part of the same meals the family enjoyed.  

When Jason’s system shut down hospice told her that to continue trying to feed him would only contribute to his discomfort because his system was no longer processing the food.  They explained what his death would be like, how long a time frame to expect before he died, and how his body would slowly shut down.   

• Both Jason and Tom had been chair bound and bed ridden for years.

• Both Jason and Tom had been incontinent for years.

• Both Jason and Tom were emaciated when they died.

• Both Maddie and I had to come to terms with the death of our husbands, after years of care and love and countless challenges.  

• Both of us had to let family know the end was near and help them begin the grieving process.

• Both of us had to say our goodbyes feeling all the regret and sadness we felt about what could have been, what should have been, and what was.

The only difference, was that Maddie still had to explain to Jason that 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 was spared that when Tom died.  Thank God for small favors.  

Tom's illness should not have detracted from his basic human needs for nurturing any more than Jason's illness did not detract from his basic human needs for nurturing.  Unlike Mr. Rosenblatt, I didn't allow Tom's appearance or his inability to rattle off his life history, to interfere with the sanctity of his last moments on this earth or my roll in those last moments.  And unlike Mr. Rosenblatt, I have a deep sense of peace in having been part of Tom's life in spite of what this disease did to him.  Apparently, if Mr. Rosenblatt's experience is to hold true, our people not only live a useless life once they get Alzheimer’s, they also die a pointless death.

I feel sorry for Mr. Rosenblatt.  His experience wasn't my experience or the experience of so many other caregivers I know who lost people to this disease, and the only explanation is that Mr. Rosenblatt integrated the negative jargon that surrounds this disease and missed being able to appreciate the life that was left in his mother.  

• Family friends lost their 7 year old daughter to cancer 

• Maddie lost her husband to ALS 

• My father died at 59 of Cancer

• A neighbor lost their son to a traffic accident

• A young woman in my church died of a brain tumor  

Who among us is willing to rate which was a better or worse death, or belittle the grieving of those who survived?

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.

I am hoping this article 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 everyone seems to have towards it.

Mind you, Alzheimer’s is a horrible disease, but unfortunately, life is tenuous at best and if we didn’t learn that on September 11, we’ll never figure it out.

So, I ask,

Does reinforcing all the negative aspects of this care help us caregivers much?  It didn't help me much and from what I hear from other caregivers, they really are more interested in practical information than they are opinions of how they choose to care for their people.

Please check out the caregiver stories located on the List of Articles Pertaining to Bias.  Real stories about how bias colored their lives, and not for the better.  

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

Tom's Story

Once hospice arrived to tell me that it was Tom's time to die I found myself dealing with very mixed feelings.  There was some relief that the end was in sight and at the same time deep feelings of loss, and guilt over feeling relief.  I found myself making phone calls and telling those in our circle the end was near.  Hospice had told me it would at least a week or two before he died and intimated that it could take as long as three weeks.  

I remember the nurse standing by Tom's bedside telling me this and wondering if he understood anything, everything she said.  Part of me wanted to move her to the living room out of ear shot of Tom's bed but the other part let it be.  I looked at the emaciated state of Tom's body and told her I doubted if he would last the week.  She was very confident that it would be closer to two weeks because... and she listed all the physiological steps that would happen before death could occur. 

 There would be changes in his breathing, pulse, heartbeat, coloration in complexion.  She assured me that he would have a peaceful death without pain.  Bed sores would occur and she gave me details on how to deal with that and assured me the nurse would come to help daily until he did.  She outlined in great detail the order in which these things would pass adding that each phase would run a day or two at least, perhaps longer, before the next phase would begin.  She assured me that Tom was at the very beginning of the process and changes wouldn't start for a day or two.

I walked her to the door and she left.  I returned to Tom's room and noticed that his breathing had become more labored.  Within a few hours it was markedly different.  I called hospice and received more reassurance but they agreed to send a worker to check anyway to allay my fears.  That was Monday.

Tuesday morning I called his sons in Illinois and told them what Hospice had told me, but I added that I thought he was going faster and if they wanted to see him they needed to start for Colorado now.

Tom died that next day having moved through all the phases like clock work in three days.  It was as if he had been given a road map and once he got on the road there was no turning back.  He had his out and he was taking it.  Why I left the house that Wednesday at all I'll never understand.  But something propelled me to go to the grocery store, I guess to pick up food and drink in anticipation of the arrival of Tom's sons as well as everyone else in our life in Boulder.  I wasn't gone 30 minutes before I was beeped.  By the time I got to a phone, he was gone.   I was really upset that he didn't wait for me.  After all those years, I missed out, and to this day I feel cheated.  But I also understand that perhaps he needed to do it without me.  That perhaps it was easier for him to go without me there.

As for the final moments.  Tom, had spent the 30 minutes with the music therapist from Hospice.  She had played some of his favorite Irish tunes and a few old standards.  She said when she finished playing she noticed his color had deepened.  She called my aid in from the other room and before she could phone my beeper, Tom took a deep breath and died.  All in all it was as good a death as one could hope for. 

Betty had cared for her husband at home throughout his battle with Alzheimer's.  They were planning a new house when the limitations of his illness became apparent.  She took over the planning and built a home completely wheelchair accessible for him.  Her adult children all pitched in to help.  She worked as a hair dresser and in order to keep her clientele she built a salon into the home and her husband would sit in his recliner while she did hair.  He also attended an adult day care program in their area that worked with late stage as well as early stage Alzheimer's.

A family reunion was planned in New Mexico and the children urged her to place Dad in the local VA Hospital for a respite stay so that she could attend.  This she did.  She had barely arrived in Santa Fe when the hospital called to say he had developed pneumonia and was fading fast.  She agreed to treat him so that she and her family could make it back to Denver before he died.  The entire family, with the exception of a son and daughter who were stationed overseas in the military headed back to Denver.  The process was put into motion to have the absent son and daughter shipped home as soon as possible.  The son would be there within 24 hours, the daughter closer to 48.

When Betty arrived at the hospital the doctor told her, her husband had made some progress with medication but very little.  The prognosis was grim and he doubted he would last long enough for either the son or daughter to arrive.  The next day he approached her again, after the son arrived.  He couldn't understand it, but her husband wasn't getting worse but he also wasn't improving.  He found that unusual but had no real explanation for it.  People in his condition rarely plateaued for long.

Two days later the daughter arrived at the hospital.  She walked into the room, kissed her father, told him she loved him, the rest of the family gathered in the room and shortly after, he died.

Gunter's condition had not changed for almost two years.  Her routine was so set that you could set your clock by it.  Her volunteers arrived at specified times and there were the visits from the parish priest.  Marilyn had little money to spare for paid help and she was pretty much it for him, a job she approached with love and devotion.  We lived near each other and the day arrived when I received a frantic call from one of her volunteers from church that Gunter had stopped breathing and she was afraid he was going to die.  Marilyn had gone shopping and we had no way to reach her.  I went to her apartment and into Gunter's room.  He was white and I couldn't feel a pulse, but his arm was so emaciated and I was so panicked I honestly didn't know how to do it properly.  The aid had already called hospice and a nurse was on the way.  I also gave the aid a list of markets Marilyn frequented and told her to have them page her, a futile effort as it turned out.

Being desperate and knowing how deeply I felt Tom's loss, I took Gunter's hand and squeezed it.  I said...  

"Gunter you cannot go yet.  You have to wait for Marilyn to get back, she should be back very soon.  She isn't prepared for your leaving, don't do this to her."

At that point, Gunter's eyes blinked, he took in a deep breath, and by the time the hospice nurse arrived a few minutes later, his pulse was slow but steady.  Marilyn arrived to a house full of people and news she didn't want to hear.  The hospice social worker explained what was happening to Gunter and what process would happen.  Marilyn insisted, he had had bad days before and he always got over it.  She was very upset she refused to believe he was near dying.  

The aid stayed late with her but after Gunter stabilized, and with my involvement assured if things took a turn for the worse during the evening, she went home.  All of us had taken a turn trying to help Marilyn come to terms with the inevitable and encouraged her to let him go.  She wasn't ready to accept it.  It wasn't until their parish priest arrived the next morning and administered the last rights and prayed with Marilyn that she accepted his death.  She walked into the bedroom, put her hands on his face, told him she loved him and it was alright for him to go, she would be alright.

He took a last breath and died.

Is the essence of life compromised by Alzheimer's?

Years ago, shortly after getting my MS,  I thought about becoming a death and dying counselor. I went so far as to take some courses and do some study under Elisabeth Kubler Ross. I changed my mind because... to be very frank, I couldn’t stop crying.  The emotional energy it took was more than I really could handle at the time and I continued my focus on a psychiatric case load instead.  However, we never really know where life is going to take us and here I am back to this point.  Facing my husband's illness meant facing his death along with every member of my support group and every reader of this web site.  So much stayed in my mind from that study experience.  Among the many other aspects of that training, was the notion that we seem to 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 in the hospital to save ourselves the long good bye.

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

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

But, these things happen to people with Cancer and other illnesses, illnesses where they still have the ability to communicate and think, people who still have use of their cognitive resources.  Our people are supposed to lose that ability.  They aren't supposed to be able to think, or process feeling, or attachments to their surroundings and the people close to them.  They are supposed to dead before their time.  They aren't even supposed to know who we are.  

They are "...a blank stone in a wall eaten away by rain."

If all the rhetoric is true, then how is it that these same patterns of dying, experienced by those who can think, seem to occur in startling numbers amongst our people, who shouldn't be able to manifest this phenomena based on the level of brain damage they develop?  The experiences in the stories told above are but a few I've heard, and the experiences seem to defy the premise that our people are dead long before they die.  It also occurs to me that if you believe in the concept of a soul, then you have to believe that the soul doesn’t get Alzheimer’s any more than it gets Cancer.  Maybe the soul has an awareness of the life around it that transcends the body, the ability to communicate, or the ability to ramble off name, rank, and serial number.  Maybe, just maybe, our people have the unique experience of being able to live in two worlds, ours and a freer one that allows them access to insights and awareness we can't even begin to fathom.

 

"I will never be the same as a result of my experience with Tom.  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.

excerpt, He Used to be Somebody