Pamela D. Wilson - The Care Navigator

It’s been a week of hospice care and funerals.  I attended a military service at Ft. Logan cemetery here in Denver for a client.  My father was a WWII veteran and we had the national honor guard at a private cemetery for his service.  They performed a 21 gun salute, which at the time I was surprised to learn occurred in three rounds of seven guns and they performed the folding of the flag, which I as the youngest was given because my older brother had already received the flags of several other family members.  I kept the flag and was given the 21 shells which I placed with the flag into a case which I kept in one of my old offices.  The ceremony at Ft. Logan was similar but even more impressive because it is a veteran’s cemetery with thousands of white stones perfectly arranged in rows.  My client was buried there and a place next to him was reserved for his wife who is still living.  A 21 gun salute was given, shells offered and “Taps” played by bugle.  I was proud to have been able to attend a tribute to a man who served his country and to thank all of the others who had served and gone before him in burial.

I have a friend whose husband became ill after the December holidays and was diagnosed with kidney and pancreatic cancer and had a life expectancy of one to six months.  My friend was shocked because there were little signs that her husband was not well but it did not seem that the causes were so significant and irreversible.  The system offered little support in advising her what to do or how to care for her husband.  For she and her husband, hospice is providing medical equipment in the way of a hospital bed so he can sleep comfortably.  Additionally they are supplying medications and related health care supplies.  A nurse visits weekly and personal care attendants also visit to support his personal bathing needs.  Hospice also offers many other services like family and individual counseling to support individuals during this very difficult time.

So how do we know when to ask about life expectancy?  In my opinion it is practical to ask in instances of chronic disease that do not seem to be improving i.e. an individual with repeated cardiac issues and hospitalizations, a diabetic whose treatment continues to require more care and for individuals who seem to have declined rapidly.  Sometimes a physician may or may not be able to give an accurate response and many worry, when asked, about giving too much or too little time so their responses remain vague.  A request for a hospice evaluation may offer more information.  Hospice agencies generally do these without charge and can provide an evaluation that offers guidance and information.  It is sometimes at this point that a physician will prescribe formal hospice care.

Hospice care isn’t just for people it can also be for pets.  My most recent experiences involve my client with Parkinson’s disease whose health declined extremely rapidly and at the same time the decline of a family pet.  Know that I do not wish to minimize the death of a client by relating it to the death of a family pet but in relating the two I wish to explain the thought process and emotions involved in both and to relate my personal experience.  My pet, C.C. a small bichon frise has had declining kidney function for the past year.  She has been in and out of the veterinary hospital for malnutrition and dehydration (her not wanting to eat or drink) and related complications.  Most recently she stopped eating and had to urinate continually every hour or so.  After a long sleepless night of letting her out every hour my husband and I called the vet.  He had us bring her in and after running tests acknowledged that she was unable to retain fluid, thus it continually needs to be expelled.  He stated that she was not too far advanced and that it was possible to provide intravenous medication to remedy the elimination problems.  We discussed waiting several days to see if the medication would work but also her quality of life and whether it was best to put her down.  At this point the vet believes that she can still have good quality of life if the problem can be taken care of, however we all know that there will be a point where it will return and the time will come where it’s best not to continue treatment.  These are the types of discussions that are sometimes easier to have about pets than loved ones.

Statistics show that hospice care is often not initiated until the last weeks of life.  In reality, hospice care can be initiated when an individual has six months or less life expectancy as indicated by a physician.  I know that families have little knowledge about hospice care and sometimes don’t feel comfortable discussing end of life care.  This sometimes makes it difficult for health care professionals to broach the subject but it is done in some cases nevertheless.  One of the most compassionate things a caregiver can do for a loved one is to broach the subject with health care professionals.  It can be difficult to ask a physician sees the life expectancy of a person to be limited.  Sometimes we just don’t want to know.  But knowing allows for planning.

Illness often creeps up over time and sometimes progresses more rapidly than we expect.  Even those involved in the healthcare industry do not see signs until issues have progressed.  Sometimes it’s more important to ask difficult questions early on that to be surprised later.  A client of mine with Parkinson’s disease had a fall in mid-November, was hospitalized and then sent to a rehabilitation facility.  While the family was hoping he would be able to return home, issues with balance and walking made this unlikely.  The individual was permanently placed in a long term care unit and his wife continued to live in an assisted living facility in the community.  Over the period of 4-weeks, the individual began sleeping more and eventually lost weight.  A hospitalization stay during week three brought up the subject of end of life care.  Hospice was brought in and the individual was given a life expectancy of less than one week.  This was a surprise not only to the health care facility but also to the family.  This beckons the question of when do we know that hospice is appropriate?

Your parent’s health has declined and they require frequent medical appointments in addition to daily home care.  While many home care agencies can provide daily care they do not specialize in monitoring medical appointments and the resulting follow ups that also occur.  It’s also sometimes uncomfortable to provide blanket permission for an individual to become involved in health care needs.  This is when an advocate or care navigator is appropriate.  This individual can accompany parents to medical appointments and ensure that suggested follow ups are completed.  Additionally ongoing communication with family members out of town, especially the individual who holds the medical power of attorney can occur as frequently as needed.  Often I find that out of town children will call their parents who advise that “everything is fine”, when one had an emergency that necessitated a hospital stay and another was sick for a few days.  Parents simply either forget or do not want to burden out of town children with day to day issues.  Want to know what’s really going on with your parents?  Hire a care navigator

You live in Alaska and your father lives in Denver and needs monitoring.  By retaining the services of an advocate and care navigator you don’t need to work about distance or time.  In this case the father, with early Alzheimer’s disease, needed daily assistance with meals, grocery shopping, medical appointments and personal care.  Depending on the complexity of the situation it may be possible to hire a home care agency to provide the services and to have the care navigator provide occasional oversight.  It’s difficult to provide supervision to home care agencies if you’re not locally in the area and able to physically see results.

I work with so many families who are separated by distance.  The parents live locally and the children have moved away for work and now have their own families.  Many times when children come home to visit during vacations or holidays they see significant changes in the lives and health of their loved ones.  Many feel helpless to do anything because of the distance.  With advances in technology and the assistance of care navigation services, feelings of helplessness can be addressed.  Having a local advocate to provide oversight relieves the minds of many family members.  Assistance can be minimal to extensive depending on the situation, allowing both parents and children peace of mind.

Remaining socially connected is very important to quality of life as we age. Whether it’s the ability to see family and friends or to participate in events that are of interest.  With a little research you’ll be able to find interest groups that match your own, charitable organizations that need support or volunteers, clubs or other organizations to which you can belong.  As previously discussed remaining socially connected may be more difficult if transportation is an issue, however for those determined to remain connected there are ways to do so.  Remaining socially connected supports quality of life, sense of belonging, self esteem and the sense that one can still remain independent and care for themselves, all very important aspects of successful aging.