Many people have family members that need long term care taking
and that have chronic, degenerative illnesses (Alzheimer's, Parkinson's, etc.).  These
diseases may be the cause of death or a pneumonia or urinary tract infection may
take the life of the patient.  Either way, these illnesses carry a particularly difficult
trademark;  that of chronicity.  

What effects does chronicity have on the caretaker?  Here are some things to watch
out for and, as a result, some things to do to maintain caretaker health as they care
for their loved one.  Corny though it may seem, it is true that, if something happens
to the caretaker, nothing good is going to happen to the patient....

TEN THINGS TO WATCH OUT FOR WITH CHRONIC HOME CARE

1.  The primary caregiver comes to believe that it is their 100% responsibility to be there
   with the patient 24 hours per day, 365 days per year.
   Get a break--even if it is only a couple of hours per week to go do something nice
   for yourself, the caregiver.  Get a manicure, a massage, or go shopping.  Get Away.

2.  Siblings begin to fight about how to spend mom or dad's money.  Often, and sadly,
   this comes down to how much money each sibling wants from their parents' estate.
   There may not be much, but if there is any, decisions are made with the death in
   mind rather than what might be the best for mom or dad.  This can create hard
   feelings all around and can be solved with a Will and Power of Attorney that clearly states
   how the patient wants their money spent.

                                       

3.  Often, one sibling carries the majority of the responsibility for care.  Sometimes it is
   because of proximity (they live in the same town) or convenience (they don't hold a
   job outside the home).  
   The other siblings will back away from caregiving and let the willing one carry it
   all.  Even small, short breaks can help the primary sibling caregiver cope with
   the frustrations that come with caring for a family member long term.  Distant
   siblings should make an effort to give their caregiver sibling regular breaks by physically
   caring for the patient while the caregiver goes away.

4.  The siblings not involved in the primary caregiving begin to make ridiculous,
   or unreasonable demands on the caregiver.  Most of the time, this comes out of
   guilt at a lack of involvement over time.  Sometimes, it is their way of being involved
   even though they are not in the situation and really do not understand what it takes
   or how it is to be a chronic caregiver for an ailing patient.
   Sometimes it is helpful to have them come and stay with the patient for several days
   while the primary giver leaves town.  That way, they can experience first-hand the
   challenges of caregiving.  Hopefully, and often, this will give them an appreciation
   for what the caregiving sibling is coping with.

5.  Taking a break and staying in town.  
   The problem with this plan is the person(s) giving the caregiver a break feels they
   can call at any time and the caregiver will be available to solve any problems.  That's
   not a break--it's being on-call.  If you are a caregiver and you are offered a break,
   plan to get-out-of-Dodge if at all practical.  You need the mental break.

6.  The Will gives Medical Power of Attorney to a sibling that is not involved in primary
   caregiving.
   Watch out for this one.  All kinds of sad situations can come out of it.  Unfortunately,
   it falls on the primary caregiver to find a way to explain the reality of illness to this
   other sibling who may be living hundreds or thousands of miles away (literally or
   figuratively) but, be very demanding in their decisions of caregiving and life-sustaining
   care.  Despite their best intentions, these siblings will often force both the patient
   and the caregiver to endure prolonged pain in their attempt to prolong life at any
   price.  Often, it has to do with guilt or unresolved emotion in their relationship with
   the parent.

                                      
                                                    
7.  The patient has no Will or Power of Attorney paperwork.  The biggest problem is that
   the patient is often mentally incapable of making complex medical decisions by the time
   the caregiver realizes the situation.  Decisions are then complicated by the "what would
   a reasonable person do" arguments that can ensue among family members.  
   If at all possible, work with the ill family member to get a Will and Power of Attorney
   paperwork in place while they are still coherent and able to make these decisions.
   It can save everyone heartache to know the patient's wishes and to see them on
   paper.

8.  Medical Power of Attorney is absent.  This is separate and different from Power of
   Attorney and involves the medical aspects of care in the event the patient becomes
   irreversibly ill.  It involves the patient documenting what kind of life-sustaining treatment
   they wish for themselves at the end of life.  
   In the event the patient becomes unresponsive or completely uncommunicative, family
   or caregivers can find it extremely difficult to decide on life or death in a crisis situation.
   And, if there are multiple family members, different philosophies or beliefs can further
   complicate the issue and create rifts in relationships.  Having the patient document
   their wishes in a legally accepted way, can guide caregivers and health personnel in
   their decisions and make the final days and weeks of life much less stressful for
   everyone.

9.  How the patient looks and dresses.   Interestingly enough, caregivers get
   very anxious about these things for a number of reasons not least of which is what
   other family members or friends might think of their caregiving skills when they come
   to visit.  
   Whether or not clothes match or hair is coiffed should become less important as
   time goes on.  For those caring for Alzheimer's stricken family members, they will
   attest to the fact that dressing and grooming can be the most strenuous part of
   the day because they want the patient to dress and groom a certain way but the
   patient will either resist or argue.
   The easiest way to cope is to "dumb down" the closet and the process.  Allow the
   patient the luxury of dressing themselves but only put matching tops and bottoms
   in the closet or dresser.  That way, no matter what they pick, it is acceptable if not
   the height of fashion.  Make grooming a game of sorts by acting like it is time for
   the hair salon appointment, or any other pleasant association that works for the
   patient.

10.  Mealtimes.  Patients may eat too much or eat too little depending on the kind
   of illness they have.  Alzheimer's patients may binge eat sweets and Parkinson's
   patients may have difficulty swallowing.  Patients may even forget that they need
   to eat or that they already ate.
   Figure out what the patient likes and provide those things.  By the time the patient
   gets to the end stages of disease, it is quite likely that it doesn't really matter
   what their cholesterol runs.  (In fact, there will likely come a time when caregivers
   and doctors agree that it is time to stop checking labwork and doing testing in
   the interest of saving the patient pain or because no action would be taken
   even if something worrisome were found.  Would anyone send an Alzheimer's patient
   to non-emergency surgery if they cannot cope with changes in their environment such as
   moving the coffee pot to a different spot in the kitchen?)  In other words, let
   them eat what they want within reasonable boundaries and let the restrictions
   relax--at least they are getting calories.  And, remember that, as patients come
   to the end of their lives, their bodies will begin to shut down and they will
   manifest a progressive decrease in appetite.  This is a natural part of the dying
   process that can be misunderstood by caregivers that are not prepared.