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The Phil Donohue Show
July 10, 1996 - final show on Alzheimer's Disease

It  was  like  every  other  talk  show  ever  done  on Alzheimer's   Disease:  

I remember the exact date of this show because it would have been my 10th. anniversary had Tom not died.  Keeping in mind that the people who put this show together are a dedicated group of individuals determined to eradicate this illness, in my opinion, the show, nevertheless, failed on many levels.  

There were the requisite panel members .

• Shelly Fabares, our official representative of the National Alzheimer’s Association.  Her mother had recently died of Alzheimer's.  Her mother had been placed in a nursing home. 

• Other representatives of the National Organization.  The various officials from the Alzheimer's Association who had a family member with this disease had also made the nursing home choice, or, they had no personal family experience with the disease.

• Several family members including a husband and wife, the husband having been diagnosed with early stage Alzheimer's.   Every member of the panel had either already placed their person in an institution, or they were planning to.  Even the gentleman with Alzheimer's had assumed he would end up in a nursing home.  

• The audience was filled with people pulled together by the local chapter of ADRDA.  The audience consisted of people who had made the nursing home choice or were already primed to make that choice.  Obviously, the mid-late stage home-caregiver was home giving care and unable to attend or lend their voice.     

• Donohue, knew only what he read about the disease and what he was told by the various officials who helped people this show.  He presented a very one sided version of Alzheimer's care but how would he know differently when he too has been fed nothing but the negative bias that surrounds this disease.  In fact, everyone on this show including the Alzheimer's officials and the participants had swallowed the standing bias about this illness because the dialogue consisted of the usual clichés...

Discussion centered about:

• how awful it was when the family member couldn't identify people anymore.

• the burden of care with this disease.

• the guilt of making the nursing home choice.

• the inevitability of making the nursing home choice.

• the cost of the nursing home choice and the importance of maintaining the Medicaid option for nursing home care.

• etc., etc., etc.

There was no discussion on the needs:

• for improved home care services for families

• to honor the care commitment of those doing home care

• to speak of the amount of home care being done.

• to honor the human essence of our people in spite of this disease process.

• to understand that a person with Alzheimer's has a right to die at home if that is their desire.

• etc., etc., etc. 

Home care for our people was never raised as an issue let alone discussed, even though every official on this show knows the statistics which their own office releases annually.  

With nursing home placement commandeering less than 25% of the care being done, it seems to me that this show gave a very lop-sided view of caregiving with this disease.   There are 4,000,000 people with Alzheimer’s Disease in this country, and according to the statistics, 75%, roughly 3,000,000 are being cared for at home by one other person, usually a family member.  In reality, the numbers at home exceed the 75% figure with the addition of paid home health care, adult day care, supported living arrangements and family, volunteer, and hospice involvement.  ( See "Facts," in the section on Incontinence Care).  

So how  can we blame our service providers or the public at large for that matter, for their inexperience and misconceptions about this disease?   Over 3,000,00 of us don't even exist as an object of discussion.  That is a whole lot of caregivers being left out of the media loop in my opinion.

But, there is more...

Ms. Fabares', who became a part of ADRDA at a time when the organization needed a national personality and who has tirelessly taken on the challenge of that role for years, shared her experience of institutionalizing her mother.  She said her doctor offered the following comment, presumably as a means of lessening the guilt she and her sister were feeling at making this decision.  He said to her, and I paraphrase:    

"Your relationship with your mother is over.  What matters is your relationship with your sister.  Your mother is past knowing who you are." 

This was repeated by Shelly as a reassuring thing to say to the other family members on this panel.  This was said as a positive thing to help everyone facing this decision feel better and lessen their guilt, I guess.  Guilt being the primary word here.

Let us think about this reasoning for a bit.  

• Many people enter the nursing home while they still have some sense of relationship with their world, whether it is to their home, their family, or some indefinable sense of life the way it used to be.  Few really want that choice to be made for them.  The fact that it often has to be made in spite of known wishes is what makes the decision so heart wrenching for families.

• Many of these family members are still able to make their needs understood, many can still identify their people with prodding if not spontaneously, and most feel a deep grieving over yet another change in their lives in spite of assurance to the other.   That adjustments are made after institutionalization is more a testament to human resiliency than anything else.   It is not about being happy with the choice.

• Family visits are fraught with disappointments all around because of the short nature of the visits and the increasing difficulties their people have with communication.  Instead, the nursing staff gets to share the lucid moments that remain.   The primary caregivers often feel cheated even though those aren't the words that automatically spring to mind.   How can they when the word everyone seems to throw at them is 'guilt.'

• Most caregivers feel a deep sense of failure when the nursing home choice is made. These feelings may be irrational, but they are nevertheless real.  They are also very complex and I urge you to look at the piece on wrote on grieving in the section on 'Challenging Attitudes.'   "Is It Guilt or Is It Grieving?"

In the statement the doctor made, any feelings Shelly or her sister had towards their mother were totally dismissed as having any meaning.   What was also upsetting to me as I watched this slow unfold is that it didn’t occur to Shelly, Donohue, any of the caregivers on the panel, no one who represented the Alzheimer’s Association who helped construct this show, or anyone in the audience to challenge the validity of that statement.   

Wow!  

What a message to send to the millions of people watching this show. 

Lets face it, if this good doctor has said so, and the official representative of this disease repeats it on air, as being a "Good Thing", and Phil Donohue nods in agreement, and all those important Alzheimer Association Officials say nothing, and the audience of seasoned caregivers all nod in agreement on cue, then, it must be so.  And if it is so, the question follows: Why would Shelly’s mother, or anyone else with this disease, need love, touch, respect, contact anymore? 

In other words why even visit her, why even care about her care if she can’t care back?   Hell, she doesn't even know who Shelly is.  More importantly, why should Shelly care, and if Shelly continues to care, then what is wrong with Shelly?   That statement stripped Shelly’s mother of her humanity and value and everyone nodded in agreement as if it was all right to do that.   

It never occurred to anyone on the show that our entire population with this disease had just been reduced to that of the waking dead by a doctor’s ignorance.   That is nothing less than a graphic demonstration of how worthless our people become in the eyes of everyone, and in a way everyone on the panel fed into that image as being O.k.   The  insensitivity towards those who have this illness appalls me.  

To those of us starting out on this journey or those of us wanting to keep our family members home, that image not only set us up for continued harassment from the public for doing the care, it sets us up as being out of the ordinary, abnormal, symbiotic, co-dependent, martyrs, and extremists who just don't get it.  And yet we are the majority.  Shelly and the people on this show are the minority example of how most of the care is being done.  

What this doctor said to Shelly and her sister, is unfortunately not unique to him.  Variations of the same theme are uttered by unenlightened, albeit, well meaning bystanders all through the caregiver’s world throughout the entire caregiving experience.   

"Don't feel guilty!  They belong in nursing home care."   

The only problem is that these words really don't make us feel better, they don't begin to address the complex feelings that go along with this decision.  How can those words make a family feel better about a decision they know is in direct opposition to what their family member wanted in their old age?   

Like it or not that is the core of the issues surrounding the nursing home choice and it is never adequately dealt with in my opinion, because the issues aren't about guilt at all, they are about the grieving the family members experience in making the decision and whether they were allowed to make a fair appraisal of all the options open to them.  Those who are fully able to explore all the options of care make an easier transition when the nursing home choice becomes a reality.   But what a quick easy fix it is.  Label the feelings of loss as guilt, put them in a box, tie it with a ribbon, and throw it in the deep blue sea.  Next?

If only that was my only gripe about his show and all the others like it.

This particular show also had a gentleman in the early stage of the disease on that panel.  He was there to express his feelings about having this disease.  This was a man who was cognitive enough to agree to be on this show, who still spoke in full sentences, who was not yet incontinent or unable to assist in his dressing and hygiene.  He spoke about not wanting to be a burden to his wife or family.  He teared up on several occasions.  The camera carefully caught his expressions as others said really awful things about what was going to happen to him as his illness progressed.  I don't wonder at the grieving he felt listening to the commentary that went on around him. 

  His last hurrah, his last chance to do something significant in his life, his last chance to tell others how he felt facing this particular death sentence and he was treated as if he wasn't really there.  He had the same experience my husband had listening to others talk about him in front of him and how useless he would become.  

• No one expressed any concern over what all that negative input might do to him personally.   

• Not once was the possibility even raised that he might expect to be loved by his family in spite of what this disease would do to him.  

I can’t imagine anyone with any other illness in any other circumstance being treated that way.  The good news is that he will, eventually, forget all about it anyway and perhaps that is all that really needs to be said.   Please look in on my piece titled:  "Does He Still Know Who You Are,"  also in the section on Challenging Attitudes.

How do we develop an caring nature towards people who lose their cognitive functions, their ability to think, relate, participate in their lives if the world reduces them to having less human value than trees?   The Donohue Show was  show like every other on this disease.  I think it's time for change.

©2000

 For more commentary of bias and how it affects caregivers click on the topics below

Bias and Alzheimer's Disease            It's Just Poop People          Is It Guilt or Is It Grieving?