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I hereby  give  you  permission.....

I suspect there is a great deal of 'permission giving,' going on under the guise of 'information giving' with this disease!

I offer that before 'permission to institutionalize' is given to a caregiver, that whomever is giving this permission must first have some understanding of a few things about the caregiver such as:

• Financial resources.

• The personal commitment to the family member.

• The sense of obligation the caregiver feels about the desires of the family member with Alzheimer's.

• The ability to access resources, respite, family help, volunteers, etc.

That understanding brings with it an obligation to make sure all the options of care have been discussed, otherwise, the permission isn't a help.  What it is, is intrusive and judgmental, an assessment based more on personal bias and less on actual needs.  In some instances it might even be construed as bullying.

I have comprised a composite of the "Service Provider from Hell." 
I have chosen to assign the gender of  'She'  to this person for no particular reason except that women, more often than men, are in the position of working with Alzheimer's families, and this is not to imply, that women are more guilty of the described behavior than are men.  'She' evolved out of caregiver horror stories shared with me from across this country and so it is also important to note that no particular person or community is portrayed here.  This is not to say that this person doesn't exist in varying forms and degrees of the following description in communities everywhere.   Encountering this person leads me to proclaim...  "Please protect us from the do-gooders."

~*~

She got into the field of elder-care out of desire to 'help' people.  Her definition of  'help'  is somewhat cloudy but does revolve about a desire to  'alleviate emotional pain,'  and make people  'feel better.'   These are by themselves, altruistic values, but in the hands of improperly trained professionals, they too often become a rational for inflicting self values and fears on those who come to them for  'help.'

This person has unexplored fears of death and disease and is a product of the 'Me First Generation,'  for whom concepts such as commitment, vows, sacrifice, and obligation, hold no real meaning except in terms of some vague definition of co-dependent behavior.   In her opinion, no one should stay in an emotionally or physically unhealthy situation, and caring for an Alzheimer's person can't be anything but emotionally and physically unhealthy.  

She therefore, routinely, 'gives her permission' to institutionalize family members once she determines their care has become burdensome.   She has been known to phone caregivers at home to  'give her permission.'   She even 'gives her permission' when told her permission isn't wanted because institutionalization isn't an option for that family.  On at least one occasion she reported a caregiver to social services because she was  '...afraid they were going to abuse their person because they  'yelled'  at her after she gave them her permission.'  

She has little awareness of the problems that were added to that family's experience.   After all she knows what is best.  She believes she is going a good thing by relieving a caregiver's  'guilt'  with her 'permission giving.'    She calls it, "encouraging them to make the hard decision."    

She really has no idea how hard that decision really is because she has never had to face such a decision herself.   Her experience with anyone in the late stages of Alzheimer's is on a periphery level at best.  She tends to rely on clichés in her counseling and routinely characterizes the care of family members as a  'burden.'   She uses terms like,  'needless sacrifice'  to describe the caregiving role.  I have never heard of her referring to anyone with this disease in humanistic terms once they pass the point of working and playing well with others, most especially after incontinence rears it's ugly head.  I suspect she sees Alzheimer's people as already dead anyway and   'why should it matter who does the care when they can't even identify their caregivers anymore.'

She is uncomfortable around those who have their people home after incontinence sets in.  She refers to them as being extremists, which tends to degrade their efforts in the eyes of others.   I also suspect she has difficulty separating the disease process, over which no one has any control, from the family member and therefore denigrates any connection the caregiver professes with their family member after speech is compromised.   Her response to such comments usually involve the phrase:  "You shouldn't feel guilty, but it is time to put him/her in a nursing home."   

What she doesn't do is give any real practical information on care issues to caregivers.  It is almost as if she is withholding real information for fear they might not make the nursing home decision, and she really wants the caregiver to  'get on with their life,'  and  'be happy.'    What she does best is suck the energy out of caregivers.

~*~

I wish this was just a sarcastic vignette, but it is all too real.  I have never given a talk in which I use this composite character as an example of negative attitudes towards this care process without someone asking me if I was talking about their community because they know this support provider personally.  

What I hear, when I hear this phrase used, is that the responsibility for the care choice is being taken away from the caregiver, and that can only lead to unresolved feelings on the part of the caregiver. 

Whatever the initial intent of this phrase was, its meaning has been perverted in its application to Alzheimer's families, who more often than not, are really in search of information and workable tools and a little encouragement when they speak of the hardships.  

When I received my Master's Degree I had been taught that my function as a counselor was to offer options, help my clients explore those options and assist them in arriving at their choices.  While I often had my opinions about what was best for them, the reality is that it was their life to live, not mine.   I was going home to my home after work, not theirs.

However, during my years of working as a rehabilitation counselor, I realized that patients often used indirect ways to let me know they were reaching a decision about a turning point in life and as an authority figure my approval was often important to them.  I recognized this because of the time I spent listening to them, and learning about them.  These conclusions weren't based on what I thought I heard in an intake interview or a few support group meetings, or on an observation from across a crowded room, or on some preconceived notion of what their lives entailed.   Most importantly, these comments were usually couched in a way that left little doubt that a decision was in the making.

There is a huge difference between allowing someone the means to make an informed decision while assuring them of your support and quite another to artfully manipulate them towards your choice.    That has no place in the professional relationship   And while a caregiver can more easily dismiss  'permission granting'  from the general public, when it is granted by an authority figure it carries much too much weight.

Sometimes when a caregiver asks where to get a wheel-chair and how to move their person safely, they might actually be asking for just that.  The fact that they cry, or express anger, or hopelessness is most likely a form of grieving and calls for encouragement and emotional support.  It isn't necessarily a plea to be let out of the situation. 

  Sometimes they just need to hear they are doing a good job and you have some sensitivity towards the loss that goes hand-in-hand with this illness.

As a counselor I learned that what I perceived about the people I worked with and their lives was on such a superficial level that to judge them or their decisions was an aspect I needed to remove from me both as a professional and as a human being.   We never truly know what others are going through.   We never truly know their stories or what motivates them and what we think is a simple solution is often very complicated and insurmountable for them   And most of all, we have no way of assessing their strength.

As a professional you can only ask a caregiver what they want to do and hope you have presented an atmosphere where they feel comfortable enough to give you an honest answer and are willing to assess their situations objectively.   That, and you need to understand this disease and know what the options of care are in the first place.  Too many of our ''helpers' enter their relationship with families with too many negative preconceived notions, all of which defeat the caregiver before they even have a chance to test the waters of care.  

When a caregiver tells you of another drop in functioning and asks what to do, and the only thing out of your mouth is:  "Isn't it time to institutionalize," then you are guilty of taking the quick fix and you really aren't being a help.   Telling the caregiver something like the following is, and in this way you leave the door open for discussion instead of slamming it in their faces. 

"I am so sorry to hear of John's latest problems. You re doing such a remarkable job in caring for him.  If your intent is to keep him home, I can provide you with information on how to deal with these changes.  John should be using a wheelchair and it probably is time to consider a hospital bed and a few other items.  A medical supplier can walk you through the Medicare process on the equipment and I can give you several numbers in your area.  I can also put you in touch with a caregiver who has already made this transition in care.  She can be of great support to you and help you to understand this latest change.  But I also think it is important to let you know that if you are thinking about another choice in care, such as nursing home placement, even if it is just for a respite stay so that you can reorganize yourself, I can also help you explore that.  I am here to help you make the best decision you can for you and for John."

I think all this permission giving has become just another expression of bias and lack of regard for the person wit Alzheimer's. 

I often wonder if the permission giving goes on as rampantly with families dealing with Muscular Dystrophy.  Some of these children live into their 20's.  Many parents are elderly.   Do counselors counsel these families to institutionalize their children as readily as they counsel us to give up our care of our family members?   I wonder!  Giving permission to institutionalize our people seems to have become the credo, and on some occasions a sort of quest of too many professional helpers dealing with Alzheimer's families, in my opinion.

©2000

For other articles that deal with the bias surrounding Alzheimer's Disease return to Ethical Issues