Your Rights and Your Innate Authority

From the moment you realize something is wrong with your family member, as the primary caregiver, it will be your job to orchestrate the care your person needs for the rest of their life. The quality of that care depends on your stamina, your ability to find help when you need it, your resourcefulness, and the ability to see yourself as the most important person in your family member’s life.  Without you, they are at risk.

As you grow into your role as the primary caregiver you will, by necessity, be involved with a variety of Professional Service Providers, lay people, volunteers, and a host of ancillary support services you never knew existed.  It will be up to you to develop a working relationship with these people and to pick and choose the services you need when you need them.  In many respects the professionals you relate to, from your physician to your volunteer, become members of your team.  And you are, in a very real sense, the manager of that team.

Team: n. 4. a group of people working or playing together, especially as one side in a contest. v.t., 2. to work, convey, or haul with a team. v.i. 2. to join in co-operative activity (often with up)

Service Providers:  aka...Physicians, case managers, social workers, counselors, aging services personnel, support group leaders, adult day-care personnel, home-health aides and their supervisory staff, nurses, nursing-home personnel, volunteers, the Alzheimer's Association; any individual who provides a service to the caregiver or the family member.

As the primary caregiver and ‘Case Manager’ your role is as follows:

• To assemble the team.  You will draw from a variety of service providers as well as volunteer and family members to set up this team.  In other words, anyone who directly affects the care of your family member and your role as primary care giver.

• To collaborate with your team. At the very least, you are, in every respect of the word, a colleague, and you should expect to be treated as such.  

• To provide the team with the information they need about your person to enable them to help you reach decisions in care.  You know your family member’s likes, their dislikes, their patterns of behavior, their quirks, their history, their needs and how best to relate to them.  They don't.

I am reminded of the gentleman who methodically piled all the chairs in his ward on top of each other his first night in the nursing home and then climbed them. The personnel on the ward were understandably upset until the man’s daughter explained that he had been part of a chair balancing act in the circus as a youth.  His behavior wasn’t psychotic.  There was a reason for it no matter how bizarre it might have appeared.   He did not need to be drugged, as was suggested to contain his activities, he needed to be understood and his attention diverted to more productive tasks.

• To report your person’s progress, behaviors, reactions to medication, response to programs and care personnel so that informed changes can be made. After all you are the one living with the results of the treatment plan.  And you are just as much at risk when the treatment plan goes awry.

For example: The medication your doctor prescribes to deal with one aspect of your family member’s increasing needs may cause side-affects that impact on another, such as incontinence problems resulting in episodes of diarrhea or constipation.  Increased incontinence care may affect your person’s continuation in their day-care program, their transportation program and the level of home-health care you need.

All of these ancillary services need to know the cause of the problem, whether it is temporary or a permanent part of the care needs, and they need to appraise you of whether or not they can continue services to your person.  Are they willing to work with you while your doctor works on the medication problems or are you facing a discontinuance in their program until the medication problems are worked out?  And, if your person can’t attend their respite program any longer what are the alternatives for respite for you?  Who do you then turn to?   You may find yourself rearranging your life as well as that of your family member in this sort of situation and rearranging on very short notice.

The doctor won’t know how potentially stressful the situation is unless you explain it, and the ancillary service providers can’t make allowances if they don’t understand the process that is happening.  So there is an urgency in letting the involved parties know what is different in your family member’s life so that new plans can be made, if necessary.

• To provide the necessary documentation that grants permission for you to act on behalf of your family member. This includes a Power of Attorney, Medical Power of Attorney or Court Approved Guardianship. This documentation should be dealt with while your family member is able to legally give their consent. Relationship or marriage does not automatically give you this right.  Speak to a lawyer immediately if you don’t already have this documentation.  Your input can be greatly reduced if you don’t take the time to provide this protection for you and your family member.

~*~

The obligations of the team members are as follows:

• To educate themselves about the nuances of Alzheimer’s Disease and the care challenges each phase of this illness imposes.

• To offer you options, information, training, support and respect, free of personal bias.

• To facilitate your role as the primary caregiver, to listen to you, and assist you in solving your problems.

• To relate in a professional manner to you and your family member.

• To act as an advocate for you and your family member.

• To observe the rules of confidentiality and relate in a professional manner to other professionals on your behalf.

• To be willing to include you as part of their team when decisions regarding the care of your family member are being discussed.

• They are not there to bully, inflict their needs on you, determine your plan of action or decide which choices in care they will offer you.  If you leave the presence of any one of these team members feeling intimidated, demeaned, ignored, angry, condescended to, or ridiculed it is time to confront them and possibly change that member of your team.

• To help you network with other caregivers.  This is without doubt the best source of information that exists.

• You, as a caregiver, have the right to expect support from these people, if you don’t get it, all I can say is, get out of there and go elsewhere.  And speaking as a former service provider, if you have a legitimate complaint, complain.  If you don’t get a response to your complaint, write the next person up on the hierarchy.  Legitimate complaints do not go ignored.  Once a complaint is in writing it has to be addressed by someone.  It may not result in change, but several letters from several people might, and yours might be the first to go on file, or the one that rings the bell.

The amount of first hand experience with Alzheimer’s Disease your team members have had matters and you have a right to explore their attitudes and their bias.   

More and more, the feed back I get from other caregivers is that the service providers who have had an intimate and life affirming experience with this illness are far more able to offer practical information and options than are those who haven't.   There are many out there who will disagree with me, but having had over 25 years working with handicapped people I know, from personal experience, that it is difficult to understand the depth of the challenge someone experiences facing chronic or terminal illness unless they have personally been there themselves.   It is therefore reasonable for caregivers to know what the personal involvement of their 'helpers' has been.    

*Those with a more positive care experience themselves tend to encourage and support positive life-affirming attitudes and offer more practical solutions to problems more easily than those who have not.

• They are less intimidated by the developing behaviors that happen as the disease progresses.

• They tend to see the onset of incontinence, combativeness, etc., as just another aspect of the illness that can be dealt with.

• They seem to be more able to help caregivers process their fears and find solutions that work for them.

• They tend not to dismiss the basic needs of our family members as inconsequential because their progressive brain damage deprives them of the ability to be a viable part of the decision making.

*Those who haven't had first hand experience have a more difficult time.    

• At best, those without first-hand experience are looking at your choices in care through limited eyes.  They have to rely on the input of others for an understanding of what the caregiving experience is.   

• This disease, more than any other seems to be mired in myths and clichés about the needs and the tasks surrounding it,  and getting past that behavior comes with experience, enlightenment and a willingness to set aside the bias that exists about this disease.   Fortunately, most have the ability to reach into themselves for this insight.  Unfortunately, some don't.

*While I don't wish to imply absolutes in attitudes resulting from any care choice, it is, however, important to understand that some who make the nursing home choice don't always feel comfortable with those of us trying to keep our people home.  I think it also need to be said that this is one area of discussion that is even more taboo a subject than incontinence.   

• This behavior is problematic for caregivers because it is more subtle than overt criticism of the caregiving experience.  It is nevertheless just as demoralizing to caregivers.   

• There are some who haven't fully explored their own feelings about the nursing home choice and who tend to see home caregivers as being out of the ordinary and on some subconscious levels perhaps a threat to their own sense of well being.       

• There is a subconscious need to validate their own choice and this can have the very negative result of skewing how information is given out to caregivers.   

• Signs to look for:

A lack of information about tools and options.

A basic reliance on clichés and the negative, burdensome aspects of caregiving.

A lack of recognition or dismissal of the family members rights and wants.

A defensive response to your expression of the positives of caregiving. 

~*~

I remember, shortly after Tom died,  approaching one such service provider to help me form a coalition to address more of the needs of the home caregiver.   Services need to be expanded and  up-graded, training needs to be improved, attitudes need to be examined and the bias needs to be brought out into the open.   This was a very highly placed individual in the national arena of Alzheimer's Disease.   

When I finished, the response was one of defense instead of support.   "You loved your husband Beverly, not everyone feels that way about their person and what about that 80 year old woman who really can't do the care and who shouldn't do the care?    We need to make sure the nursing home option is safe for impoverished families.  And, I don't believe our people benefit from sitting at home all day staring at the walls."

I later found out this person's mother had been institutionalized.   I wondered if that had any influence on the reaction I got.

• I also wondered if 'her' staring at the walls in the nursing home during the last stage was that different an experience than the one my husband had staring at the walls in his own home.  

• I wondered if his views about that 80 year old woman superceded the fact that there are numbers of 80 year old women doing this job of caregiving even if they shouldn't, who don't meet Medicaid restrictions, or who refuse to institutionalize their people for their own reasons.  And what about their needs?   

• I wondered about his defensiveness about my proposal considering I wasn't making a case for home vs. nursing home care at all, I was making a case about quality of care and a need to challenge the bias that exists about this disease and which influences how caregivers are treated.  

• I wondered why I left this meeting feeling I had just been shot down, my care of Tom had been reduced to insignificance, and the rest of us struggling to keep our people home as long as possible could go to hell.  

~*~

It is time for support people to get off the 'high horse of anonymity,' an often misunderstood part of their training.  It is called, 'Professional Detachment.'    Personal experience remains the best teacher for caregivers facing this disease.    While your relationship with your support person is therapeutic in many respects, it is important that all parties recognize that the primary function of your support person is one of providing information and options.   It is essential to be empathetic but it is also essential to be informed.  You have the right to ask your team members the following questions:  

• Whether or not they, personally, have cared for a family member with Alzheimer’s Disease or other long-term illness.   How long they cared for them and their reason for institutionalizing, if that was done.   

• How much specific training they've had on the stages of Alzheimer’s Disease and the problems unique to each stage, particularly late-stage care and incontinence care.  

• What level of training they received.  If they function in a counseling capacity, did they do graduate work or is their degree on a bachelor’s or associate level?  The higher the degree the more supervision (actual case work under the supervision of a trained professional in which their work is critiqued and standards of conduct are required), they received.  Are they members of any professional organizations that require periodic upgrade in training and ethics such as a national certification membership?  

• In the case of a home health aide, you have the right to know how much experience they have with Alzheimer's patients and what training they received from their referral agency.   It is always a good idea to check references and talk to someone at their last assignment.   Alzheimer's Association Chapters are beginning to establish certification programs for personnel working in all areas of Alzheimer's Care.   I believe this is a good thing, a timely thing, and recognition of a very real need.   Alzheimer's care  requires very specific experience and training.

• Who does your service provider answer to?   What is the chain of command in their present position.   This may not be your first question but it is something you have a right to know.

• How much do they know about long-term planning and will they be able to refer you to service providers who can help you deal with the developing behaviors such as incontinence, sundowning, combativeness, etc.  Always ask what they know about incontinence care.  This is the single most important issue in dealing with this disease.  You can tell a great deal about what they know generally by what they know about this one subject.

• For copies of every report, referral letter, case note, and medical report written on behalf of you or your family member.  This includes Adult-Day-Care, Special Transportation, Home Health Care Agencies, government agencies such as Vocational Rehabilitation, Senior Services, Disabilities organizations, Doctor's Records, Lab Results, Test Results, Psychologist Reports, ancillary therapies such as Speech, Physical or Occupational, Hospital Records.  Exceptions to this are The Department of Social Services and the Police Departments.  (See under Assembling the Team). 

Just as one example of how detached we professionals can be no matter how insightful we see ourselves as being, I'd like to share one aspect of my experience in working with handicapped people with you.   

I routinely ordered wheel chairs and hospital beds for my clients, also providing the training necessary for their use.  I navigated Medicaid, Social Security Disability, Medicare for my people routinely and found ways to fit them into our rather stringent financial requirements when necessary.  I helped plead cases on their behalf.  I prided myself on my caring and pragmatic approach to helping them over the hurdles of life after an accident or as the result of chronic illness.   I knew what agencies to call based on individual needs.   I had spent 25 years learning the system in New York City, no simple feat I might add.   I had a working relationship with the top people in the field of rehab. and I was fairly secure in my knowledge, my experience and my counseling ability.   

But getting back to the point.... aside from obvious ramifications of why a wheelchair was needed, it basically remained a mode of transportation to me, a structure of wheels, levers, and brakes with adjustable seats that needed to be navigated through largely inaccessible space.  Something a disabled person needed to move about.  I never really let myself think about what that chair meant to someone's self image, I certainly didn't allow myself to spend much time thinking about what it meant for them to use the toilet.  Oh I ordered the rehabilitation that taught how to transfer to toilets and tubs.  I purchased equipment to move them in and out of those chairs.  I lobbied for accessibility in buildings and on public transportation for wheelchair-bound citizens, but I never really stopped to think about the feelings, their fears, or the loss of those facing life in one of those things.  If I did, I moved on because their reality was too real for me to dwell on for long. 

I  usually administered the decisions of what my agency could cover in a very pragmatic manner.  After all, there was little choice in the options.  My clients had come to me to help them navigate the services available to them and I felt it was important to keep the discussion as professional as possible.  That clinical distance I was taught as part of my training as a counselor served me and my clients well, I thought.  I also pooh poohed the notion that one had to experience 'their life' before one could counsel someone experiencing 'their life.'  

Well people, I was wrong.  I was arrogant and I was wrong.   I wouldn't find out what that clinical detachment really felt like until I sat on the other side of that desk on behalf of Tom.  I realized very quickly that the clinical bomb shelter that surrounded me during my years as a rehabilitation counselor had served to protect me from the ‘real’ realities of what my clients faced.  You see, like everyone who enters the "Helping Field," I went to my home after work, while my clients went home alone to theirs, alone, dragging their wheel chairs and hospital beds with them.  

In order to make the team concept work, you must realize: None of the team members are mind readers!

• Communication and Being Prepared are the key words in working with your team members.

• It is incumbent upon you to be prepared with your questions, your needs, and your observations when you see them.  By being prepared you send a message that your goals are clear, and those goals are to attain best possible care plan for your family member and meet your own needs as the primary caregiver.

• How you conduct yourself may determine how you are treated. If you enter a relationship with a service provider with a n aura of authority you will probably be treated differently than if you enter that same relationship feeling like a victim.  For example, asking them what their experience has been not only gives you a clearer idea of what to expect from them as professionals you let them know you are assessing their abilities as much as they are assessing yours.  This is an important step in creating a partnership, a team effort.

• You have to learn to be specific and say what you mean and don't babble.  All this opening up and letting it all hang out is highly over-rated.  One must learn to be very careful about who you open up to.  Not everyone is experienced enough to separate your expression of stress from the realities of your relationship with your family member.  There are some who look for abuse almost as the major task of their jobs and caregivers of family members with this disease are often the victims of such attitudes.  People who reside on the outside of your life can be very quick to make judgments based on a few seconds of observation.  After all, you have to be a little crazy to do this level of care in the first place, becoming abusive as a result of the stress is almost expected by some.  

In many ways the issue of elder abuse with this population too often takes on the aura of a witch hunt with people who really don't understand this disease or what this disease does to the people who get it.  Elder abuse is a very real problem, but, because our people become helpless, it doesn't necessarily follow that they will be abused because of that helplessness any more than a helpless baby is assumed to be ripe for victimization by every parent.  

We caregivers live in a world that expounds the difficulties of this level of care and yet we are really expected to function on the level of June Cleaver, an interesting dichotomy in my opinion.  We are deprived of sleep, services, respite, encouragement, and empowerment and when we cave in and express our frustration, or an 'accident' happens and our person is injured, we are the first person the finger gets pointed at.  We aren't allowed to yell, indulge in wistful thinking, swear at incompetence when we perceive it, or chastise professionals who are less than professional unless we are lucky enough to be in the hands of someone who truly understands this disease, the abuse issues, and what is real and what isn't in our particular care experience.  It is important to be aware of this.   

I remember an incident in a support group I sat in on in which a caregiver began to weep over the dramatic change in her husband over the last four weeks.  He had become very combative and she offered.  "I feel so bad but I just slapped him the other day."  I watched the support group leader lean in towards this woman.  "You slapped a helpless man?"   I could see the body language change, the tone in the voice change, the judgmental expression that passed over the faces of a few of the members.

I immediately interrupted and asked the caregiver what had happened.  This was a woman who had made tremendous efforts to keep her husband home.  His rising combativeness correlated with his not sleeping for days which in turn kept the caregiver up as well.  She then related the rest of the story.  She was trying to get him into the shower, he became very combative and started punching out at her.  When he pinched her under the arm, and she couldn't get his fingers to spread she slapped his hand, hard, to make him let go.  I then launched into relating a similar experience of mine which prompted similar experiences from others in the group.  We talked about how quickly a casual observer can misinterpret the actions of a caregiver and how important it is for us to understand the real workings of the family before we jump to conclusions.  Sometimes, a bruise is just a bruise.  

This person needed an evaluation of the medication being used, she needed tools on how to deal with the combativeness, she needed a respite break for starters, she needed more help at home and ways to navigate that choice based on her financial limits.  She needed encouragement and a reality check and acceptance that lack of sleep and the stressors of this disease sometimes lead us to think thoughts we regret later, but they are just thoughts.  What she didn't need was a complaint to Social Services.  

The best I can offer is that becoming a successful case manager is a learning process that involves taking charge as the first step.  And, acting the part of being in charge is often the prelude to becoming the one in charge.  It starts with little steps and it becomes a skill like any other skill that is learned.  And while it is easy for me to tell you that taking charge is the only option a caregiver has once they take on the job of primary caregiver, I also know how difficult it is to take charge when you are in the middle of all the muddle.  It is difficult to maintain the bravado, the aura of being in charge when you have no idea where you are headed or what is going to happen when you get there.  And I don’t want you for a moment to think I sailed through this process on gossamer wings myself.  It was a hard climb for me even with all my experience, and it is a hard climb for every caregiver I’ve met.  But your attitude is the key to success.

~*~

Being an effective service provider comes with experience, training, resourcefulness and an unbiased attitude. 

Being an effective caregiver comes with experience, training, resourcefulness and an ability to take charge. 

~*~ 

©2000

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