Chronic illnesses have a devastating affect upon the victim, their family, and anyone close to them.  For the most part, they are unable to perform  many routine tasks, major ones like  working for a living,  all the way down to the simple task of pre-paring and/or eating meals.

Some illnesses, like the common  cold, will  only knock someone down for a short time, while other more serious illnesses like Alzheimer’s, Cancer, Huntington’s, and many others, make it necessary for someone  to  step up  to the plate and become the caregiver for the victim.   Caregiving  can exist in many levels, with some caregivers only  having to  assist only with major chores, while others have to become like a parent/nurse/housekeeper combined for the person  that they are helping.   

Neither the victim  nor the caregiver can accomplish the tasks at hand without the existence of a strong support  system.  The following pages will deal with the many levels of support, and  will discuss what organizations, professionals, or individuals are  usually involved in  providing  care for the victim.

Because the person that I am caregiver for is my wife, who is a  victim  of Huntington’s Disease, most of the information I provide will center around that disease.  However, the actual duties of the various caregivers will be pretty much the same.  The primary caregiver will usually be a  family member or close friend, and they  will be instrumental in keeping all other aspects of caregiving in tune so  that the patient gets the best  assistance possible. 

First, let me introduce myself  and tell you a little about me,  my wife Harriet, and her illness.  My name  is Winn  White and I am a 70 year old  man who has been married to my  childhood  sweetheart, Harriet, for over  47 years now.   

When we married, we decided that we wanted to see the USA during our life together, so we have lived in Massachusetts (our home state), Florida, Arizona, Tennessee, and now Kentucky.  We were both in the Air  Force and were stationed in several places  both here and abroad.  We also  have two grown daughters, three granddaughters, one step-granddaughter,  one grandson, and a step-great granddaughter.

Over the years, I have suffered  with COPD, diabetes, esophageal  cancer, and have had a heart attack.  Harriet  has a genetic disorder called  Huntington’s Disease (HD), which she inherited from her mother, along with  all four of her siblings.

It should be noted that all of these illnesses have the  capability of being  fatal, and without receiving good medical care as well as great home care from each other, neither of us would  be here to tell our story, or to try and show others how to get the support they need when faced with such illnesses.

On the following pages we will deal with the many types of caregivers that make up a person with chronic  illness’s support system.  Some will have purely professional relationships  with the victim, and others will be more personal, usually being family members or  close friends.  All are important because they deal with a different aspect of the victim’s condition, or of their daily life.

I will deal first with the primary caregiver, the person who has to maintain a good knowledge of the victim’s condition, as well as of what the various caregivers are providing.  I guess you could call him or her the “juggler” of the system because it  is up to them to keep everything working  together.  Then, I will deal with the other people who help the victim  cope, including medical professionals, support groups, friends, other family members, churches, and even the Internet. 

Usually the primary caregiver will be a family member, or a very close friend, someone that the patient  can trust with the knowledge of their illness or condition, as well as of their personal feelings.  TRUST is  a major issue.  The primary should  not be sharing any personal information unless the patient has asked them to, or at  least has given permission to.   For the most part, the patient will usually authorize the primary caregiver  to provide information on daily problems, complaints, or changes in their  condition with the patient’s medical support team.   

Because some conditions render the victim unable to really keep  track of their own decline or progress, such as a victim of HD or Alzheimers,  then the primary will tend to assist  the victim  in responding to the  doctors’ questions, and will often keep  a log to assist in doing so.

Their duties may involve assisting with some of the following:
Transporting, both by wheelchair, or in a vehicle
Reading to them, especially mail

They should be given explicate instruction on many of these aspects by the  medical team.  Some of these duties will be quite simple at first, but as some of the more severe conditions  progress the duties become more difficult.  Unfortunately, some of the conditions will reach a point where  the average caregiver can no longer handle  their responsibilities, and professional help may be needed, and too  often the day comes where the victim  must be institutionalized. 

Just to provide an example, as Harriet’s primary it is my job to prepare all her meals, often having to puree the foods; to bathe and dress  her; to assist her with her toilet habits, to transport her in her wheelchair,  and  in the car.  Because her condition is severe, she can no longer walk at all.   MOST illnesses will not become that severe, but HD tends to do so at  some point. Her day is spent watching TV and napping.  Unlike many HD victims,  she has retained a good percentage of her intelligence.  She can still add and subtract, and is still an awesome  speller.  This is rare at her  stage of HD.

The most important thing to remember is that to the victim what  you do for them is not as important as  the fact that you  are there for  them.  You become their anchor to normalcy.

As the primary caregiver, a person faces a great  deal of stress, disappointment at times, exhaustion, and unfortunately will often feel that they are failing at their job.  BUT, and this is important, remember that this happens to ALL caregivers, and  cannot be escaped.  There will be times when you have to get off by yourself, maybe go to a movie, maybe just for a walk.  Keep in mind that your job is two fold.  You are having  to care for the victims needs, and at the same  time must keep yourself healthy. Harriet and I escape a lot of the stress and the tension, because we laugh a lot, both at ourselves and at the  disease.  She has maintained  her sense of humor which makes a huge difference.  Some victims  cannot do this, and with many  of the patients that suffer with neurological illnesses like HD, they can become very angry, and even a little hostile.  At those times the caregiver must keep in mind that it isn’t them  talking or throwing tantrums; IT IS THE DISEASE!  I try to remember the good times and forget the bad.  Harriet and I married “for better or worse”, and  we have  seen a lot of the better and unfortunately because of her illness we have also seen some of the worse.  Dealing with illnesses that have mental issues requires two main things…PATIENCE  and  MORE PATIENCE.  Ultimately, having the person still with you makes it all worth it.

NOTE:  Most cities, counties, or states  now have agencies that can send assistance to the home to allow  the caregiver to go shopping, and often they also do housework while watching  the patient.  We have a girl that comes in twice a week, who bathes Harriet, does light housekeeping, and  fortunately does my  least favorite job…the  laundry.  All of this takes a great deal  of pressure off of me.  A state agency pays for this for which I am very thankful.  When we lived in Florida, there was an agency there  that did the same.  It is  important that a caregiver take advantage of any assistance they can get.

There will be more references to  the primary caregiver as we deal with the other members of the support system because the primary will have a lot of interaction with the others.

Chronic illnesses don’t only impact  the victim  and/or the primary caregiver.  They also affect the all members of the victim’s household.  It  is imperative that all family members get a strong knowledge of whatever disease the victim has, how it affects them  mentally or physically, and what their role is in helping  take care of the victim.  They need to know how they  can help the primary caregiver, as  well as the  victim.   It has been proven time and time again that families that work together on the caregiving better  maintain familial harmony than those where  there is no harmony or cooperation.

Without interrupting  their educational needs, younger children  can handle some of the lighter workload, such as dishwashing, helping serve meals, and doing laundry.  This shouldn’t be  an imposition because it is a  normal chore load for children anyway.  Older children can probably help with moving the victim in their wheelchair, helping them dress, etc.  Family unity becomes a strong bonding agent  for a family  which could otherwise become  disjointed.  I have observed that children who are allowed to help their mom  or dad with these issues are more sympathetic  to the needs of the victim,  and at the same time gain a feeling of belonging and having pride in themselves.

It is often difficult for a victim’s  friends, especially their  best friend, to accept their new limitations.  Usually, at least for a time, they want to help somehow, but aren’t sure what the  can or should do.   It is up to both the victim and the primary caregiver  to sit down and explain what the victim is going through, and how they can help.  They need to know their  role, as well as their limitations in helping.  Both the primary and the victim need to accept that even the strongest  friendship can slowly disintegrate as  the condition continues to stand in  the way of previous  activities.

In today’s  world, there is no better place to gain knowledge on  anything than on the “information highway”, the  internet.  The various caregivers, family, friends, and professionals, can look up information on the victim’s illness, on new treatments that are available, on support groups in their area, and on just about  all aspects of caregiving.  I personally visit several online support groups for Harriet’s illness, HD;  and for caregivers.  I have probably learned 6more there than from books, or  from  the doctors, especially when it comes to adjusting to her mental decline caused by the disease.  Support  groups are there just for that….SUPPORT!

Medical plans today make it imperative to have two active physicians when you are dealing with a chronic illness.   

First, you  must have a primary  physician, one who handles all routine medical needs, such as physicals, medications control, routine  illnesses like a cold, and weight control.   

Then, you must have a  specialist that knows everything available about the disease that is considered a “chronic” illness.  Basically, to  put  it in simple terms, a chronic illness is one that probably will not go away.   It may, or may not, be able to be controlled.  The specialist needs to be  one that keeps up with all the latest treatments and available medications for  the particular disease.  The primary must keep  track of any known  interactions  between routine illnesses and the chronic ones, especially where medicines are concerned.  Keep in mind that some people develop more than one  chronic condition, which may mean that there could be several different  specialists involved.  On top of the different physicians, the pharmacist is another important part of any treatments  for illnesses.  They are most  apt to catch  the possibility of interactions between different meds that are prescribed by the different doctors. With some conditions, there can also be several different therapists involved in the treatments.   

The main thing to remember is that there is one person who is in the middle of all of this, the one who needs to keep track of all treatments and meds, the PRIMARY CAREGIVER.

One of the biggest questions that tends to come  up is how important is the church in providing support for someone with a chronic illness.  This is a tough one, because it really depends on the victims personal convictions.  To someone who never goes  to church, it may not be important at all.  To the casual churchgoer, who attends a weekly service but doesn’t get  involved in activities it may be important,  and it may  not.  To someone who  is extremely 7active in the church, or is in a  position of authority  there it  will most likely be very important. 

For this writer, it is very important.  Prayer has helped keep  me here to  take care of Harriet.  I was sent home  to die with stage four cancer  thirteen years ago.  A lot of people prayed for  me daily, and the cancer disappeared, so to me the church needs to be in my support  system.

Do I believe that God has to be  involved?   That isn’t  for me to  say.  Each person has to make that decision based on their own faith.  I believe that God left me here to take care  of Harriet, so for me it is very  important. I do believe that if a person is  an avid churchgoer, their preachers, deacons, etc. have an obligation to visit  them  and give them  heavy emotional support.

Almost any chronic illness that exists today has support groups  throughout the country.  Are these important?   In my  mind they are one of  the most important suppliers of support.  Harriet and I attend an HD support group in Louisville whenever we can, depending on her condition. These groups are most important because others with the same illnesses can share their experiences, their problems, and  new treatments that they are getting.   

In my mind  it is imperative that  both the victim and the caregivers attend these meetings.  Sharing experiences is probably one of the best ways of learning more about a person’s condition.