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Putting Together a Case History  ©2000

A Medical History       An Observational History       A Record of Events 

Your team members can’t know what you need or help you access services if you aren’t able to make your needs known.  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 sense of authority you will probably be treated differently than if you enter that same relationship feeling like a victim. and by asking them what their experience has been you not only get a clearer idea of what you can 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.

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

If communication is the first priority in dealing effectively as a Team, being prepared with questions, observations and your needs is the second priority.

One way to avoid pitfalls and misunderstandings between team members and yourself is to learn to organize what you need to talk about before your visits. While the following ideas are intended for caregivers, some of this advice might even be of help to family members who feel they are on the outside looking in and are having trouble getting a clear account of what is happening with their parents, the doctor, and the other service providers.

• Be prepared with a list of things that concern you.  Well thought out questions are more likely to get useful answers.  If the caregiver forgets to cover a topic during the meeting, phone and ask.  For those caregivers who don’t want to be a bother do not worry about taking up a service provider’s time. That is their job, that is why they went into this field of work.

• Be prepared to share your observations, your thoughts about the behaviors, and the ways in which you have dealt with the changes up to now.  Don’t forget, your service providers are learning too.  How you solved a problem may be valuable information for them to pass on to the next caregiver they see.

• Your gut reactions may be far more on target than any speculation a service provider, including your doctor, can make on the basis of a short office visit.  Learn to trust your instincts and speak up. You may be totally wrong or you may bring an insight that changes how everyone views the problems at hand.  You have nothing to lose by speaking up.

I decided to keep a case history of my husband as soon as I realized the trouble he was in. I did this partly out of habit, since keeping case records was a part of my function as a rehabilitation counselor and partly because it gave me a sense of control over what was happening.  Once the diagnosis process began we faced a barrage of doctors, psychological testing, neurological tests, commentary from various professionals and feelings of being overwhelmed by the amount of paper all of this generated.  It became apparent that it was necessary to find some way to organize it into something easily accessible and in chronological order.  What started out as an exercise in organization became a case history complete with my observations, discussions with other service providers, a running tally of medications that were tried, medical history and how treatment impacted his ability to function. It became an easy reference both for where we had come, and where we were going.

I also made it a practice to get copies of every medical and progress report our service providers generated. This not only kept me abreast of what was being done to make my husband’s existence productive, I also think it generated more effort from our service providers than I might otherwise have received because I was taking an aggressive hand in his treatment decisions.  I made a point of knowing how our case was being presented to others because I asked for copies of every referral letter sent.   I also let every service provider know from day one, that I was keeping a detailed account of Tom's records.

I bought some case folders with two-hole clips on both sides of the folders and divided the material into two sections.  Any office supply place has these folders.

This chronology is very important for another reason. 
It becomes a running record of your care, what you've done, what action you've taken, and how your person is faring under your care.  It would be a happy world if the caregiver never had to justify their care, but in the world of litigation, unhappy adult children, unhappy family members, estates, second marriages and neighbors who too often call the police when they hear 'noise' next door, proof of your care, such as the sort of chronology I propose, might just be your salvation.

Left Side of File:  Notes relating to Medical Status and Treatment

Medical Reports - Medical records in Physician offices provide copies of both the official reports and the case notes upon written request.  I did this as a matter of habit on each visit.  Most Records Departments will send you copies if requested.  Make a habit of it. 

Laboratory Test Results - Same as above.  If the lab won't send it to you the doctor will.

Psychological test results - Same as above.

Medications List with side affects descriptions, dosage, dates - This is provided automatically by pharmacists.   

Therapy Modalities Reports such as speech therapy, physical therapy or occupational therapy. - Usually given during evaluations but they are available upon request and that includes the case notes if you wish to have those as well.  

Progress notes from adult day-care.  All Adult day-care units must record the progress of each participant.  They will also speak with you about problems as they see them arise.  Do not be hesitant about looking through these notes from time to time or requesting an update on how your person is doing.  They must make copies of these notes available to you if you request them.  

Referral Letters to doctors and services providers  - Whenever a referral letter or report was sent to another provider, I asked that a copy be sent to me also.  

Copies of Official Documents such as my guardianship, Power of Attorney, Medical Power of Attorney, Living Will if any, DNR Statement (Do Not Resuscitate) and copies of any waivers signed.   I always had proof of my guardianship of Tom with me at all times and when I signed a waiver allowing the passage of information to and from one provider to another I also included a copy of my guardianship in their file in order to facilitate my access to those files.

Right Side of File:  Documentation of case notes and daily living notes.

The case notes 

These consisted of blank sheets of paper affixed to the right side and filled in as events happened.  They were notes to myself that addressed the immediate picture. They included observations of Tom's behavior changes, sleeping habits, medication side affects, thoughts on what was happening.  They also included discussions with service providers with apt. dates, phone calls, etc. As one page filled a next page was affixed.  This way there was an automatic chronology of events and my participation in those events.  

The notes I kept were nothing elaborate but they also forced me to look at our changing reality. which gave me an edge in helping my team members understand the course of Tom’s deterioration, his needs, and my needs better. Most of them were hand written and little more than scribbles to jog my memory. For example:

5/10/98  Doctor to see Tom today 3pm    Agitated, uncooperative, hasn’t been sleeping. Doctor prescribed xxxx         dosage  xxxx

5/11/98   First full night’s sleep in a week.

5/30/98   Tom seems to be on a pattern of wakefulness in spite of medication.  Meds worked for about a week and then pattern changes.  At present, sleeps one out of three nights.  Also, unsteady on feet, having trouble bathing him. Called Dr. M. about side affects of meds.   Dr. feels side affects may be a trade off.   I agreed one out of three nights of sleep better than none.  Feel can handle.  Will advise if unsteadiness increases.

6/8/98   Unsteadiness increased, fallen several times, not sleeping. Meds. not working.  Meds may be making situation worse.   Call doctor.   apt set, 3pm, may remove all meds.  

6/8/98  Doctor reduced meds.  I am to take him of xxxx

7/29/98  Can't sit  without help, more unsteady on feet, checked with ins. re: wheel chair.  

I included in this section my thoughts about Tom's behaviors, observations of behaviors in context of drugs, programs, etc., and interactions with the various 'helpers' in his life including myself.   

Things to include in comments:

• Treatment programs such as Occupational Therapy, Speech Therapy, Adult Day Care, Homeopathic treatment, Massage therapy, Physical Therapy, Acupuncture, Music Therapy and response to practitioners.

• Adjustment to, involvement in, improvement if any.

• Any changes in behavior and functioning in the various categories such as sleep patterns, eating patterns speech, vision, that occurred after medication was begun or changed.

• Prescription number, doctor name, drug name, amount prescribed and purpose.

• Potential side affects of medication.

For example; some medications may cause constipation, diarrhea, lethargy, changes in heart rate, susceptibility to bruising.  One caregiver shared that she was faced with a visiting nurse who commented about the bruising she noticed on the husband who had Alzheimer’s and Parkinson’s disease.  This was noted in a manner which suggested the caregiver had been abusing the Alzheimer’s patient.  When the caregiver produced the information that bruising was one of the side affects of his medication, it was noted in the nursing notes as such, and the caregiver was immediately absolved of any wrongdoing. 

The Daily Living Notes 

These notes reflected the long term picture and gave me quick reference to his history of care. 

These address the long term picture.  Since the illness moved relatively slowly, I made it a practice to chronicle the losses at no less than 6 month intervals. These notes were more subjective.  I chose 10 headings that seemed to encompass the functional areas necessary to independent living, I listed the headings on blank sheets of paper with open spaces for written comments, Xeroxed several sets of these pages and inserted one set every 6 months. Sometimes the changes were very dramatic, sometimes little if anything was noted.

These notes related to specific strengths and losses in functioning.  For your information I have included a list of reference points under each heading.  

Daily Living Notes: Date:_______________

1. Dressing, Hygiene, Feeding

• Handling of closures, zippers, snaps, buttons, belts.

• Handling overhead items, such as sweaters, tee shirts, etc.

• Utilizing clues such as labels and seams to aide in dressing.

• Ability to dress in front of a mirror.

• Handling underwear, bras, briefs, panty hose, etc.

• Dressing in the correct order and for the correct season

• Handling bathing,

• Handling shampooing, shaving, hair styling, makeup.

• Ability to handle toileting.

• Ability to prepare food, handle eating utensils.

• Ability to feed self, cut up food, pour beverages.

• Ability to clean up and put away utensils at end of mean.

One caregiver noted that her father kept trying to place his drink on the table instead of the place mat, generally spilling the contents.  She realized the place mat was covered with flowers and birds.  She reasoned that he thought the birds and flowers were real.  When she replaced the mat with a solid color, the problem stopped.

2. Hygiene 

• Ability to function in bathing and toileting

• Operated faucets safely

• Gets shampoo and soap rinsed properly

• Shaving abilities

• Ability to toilet self

• Oral hygiene

3. Sleep Patterns

• Changes, reactions to medications, Sundowning symptoms.

• Obvious changes in life style, such as a move to a different room or a new home that might account for restlessness. The restlessness may have to do with the unfamiliarity of the surroundings. Changing the color of the bedroom might have soothing or opposite effect on restlessness depending on the color.

4. . Behaviors:

• Changes in behaviors towards family members and caregivers.

• Changes in behaviors at bathing time, toileting, dining, leaving the house.

• Changes towards being in unfamiliar places with unfamiliar people

• Changes in ability to follow directions

• Situations that triggered angry reactions. What preceded an angry outburst.

• Emotional swings, lethargy, depression, crying jags, inappropriate reactions, hyperactivity, hoarding activities.

5. Vision and Speech

• Observations of changes in speech, conversation, word finding problems.

• Observations of visual problems, how they handle reflections in mirrors, depth perception.

• Problems with physical lay-out of bathroom, bedroom, etc. Does your person trip over the toilet or bang into the furniture?  Chances are the field of vision has begun to change.

 One doctor told me my husband was color blind after administering the standard color test which uses colored dots to define number shapes.  However, Tom could still correctly identify colors when shown individually.  He failed the test because his brain could no longer make identifiable shapes out of the colored dots. I recognized he had lost half his field of vision when I realized the left half of his dinner plate was being left untouched. When I turned his plate he often remarked; "Oh there’s more," and he would proceed to continue dining.

6. Entertainment

• Ability to fill time productively

• Attention span, ability to concentrate in movies, TV, reading, etc.

• Sociability.

• Ability to operate the radio, television, VCR, telephone, etc. unassisted.

7. Travel Restrictions and Mobility

• Ability to get in and out of vehicles

• Ability to handle traffic delays and sounds and length of ride.

• Reactions in Airports, train stations etc.

• Ability to drive.

Once visual perceptions, thinking process, reflex action, faulty reasoning are apparent, your person should not be allowed behind the wheel of any vehicle. They are not only a danger to themselves they could quite possible kill someone else. This is not debatable, this is non negotiable.  Take the keys away, do what has to be done, get them out of the driver’s seat. This also means that someone else is going to have to pick up the slack in getting this parent out to run errands and continue a social life unless the primary caregiver is able to assume the driving duties.

8. Environmental Concerns:

• Ability to use faucets unassisted and regulate hot from cold.

• Ability to use cooking utensils safely.

• Ability to use stairs, do they need supervision?

• Ability to operate locks, gates, appliances.

• Changes in gait or balance.

• Ability to discern harmful from digestible substances.

• Wandering, pacing, how safe is their environment and how contained is it

9. .Exercise

• Independence in completing their exercise regime

• Increased needs for supervision/changes in program

• Ability to concentrate and follow through.

10. Personal Thoughts and Observations:

• Note the connections you see between one behavior and another.

• Note your ideas, comments from others, articles you’ve read. New research you’ve heard about.

• Over a period of time you will begin to see how inter-related the losses of functioning are with each other. As one skill begins to deteriorate, others will also be affected.

• This exercise may do little more than keep a running tally of what is happening but it is a case history that probably doesn’t exist elsewhere.

• The notes can be a useful tool in helping family members understand the extent of the problems being faced.

• The notes can be a useful tool in clarifying services provided by the team members.  It becomes very difficult to remember when certain behaviors or incidents happened. A quick reference to these notes can clear up questions as to the affect treatment had, a change in personnel had, a change in medication had.

• The notes helped me remember what I needed to talk about on the doctor visits. 

• Perhaps the greatest aid it performs is one of retrospect. You will be able to look back and see how far you have come. The notes become confirmation of what you have been able to do and an indication of your ability to deal with the future.

To download blank copies of Daily Living Notes click here......

©2000

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