A CAREGIVER IS someone who cares enough about a friend or family member to put there normal activities aside and dedicate themselves to assisting that person in any way that they can.

A CAREGIVER IS someone who researches whatever illness or disability their friend or loved  one has in  order to understand  how it will effect  that person, and to better understand  how they can best help them.

A CAREGIVER IS someone who learns from  medical professionals, family members, and  other friends of the  afflicted person, what  the needs of the afflicted person are, what their interests are, and who can  be reached easily if assistance is needed.

A CAREGIVER IS someone who understands that  the afflicted person can become  angry, sad, confused, or depressed with little or no warning.  It is especially important that they  recognize depression quickly, and that they know what steps to take to protect the afflicted person from self  harm. 

A CAREGIVER IS someone who is willing to find entertainment to keep the afflicted person’s attention, whether it mean watching TV shows, playing games, reading, or just  visiting.  With illnesses like  HD, Alzheimer’s, and other illnesses that affect the mental abilities of those who have them, this may mean having  to play extremely simple games  that are designed for small children.

A CAREGIVER needs to understand that the  afflicted person may not remember how to acknowledge their gratitude for  what is done for them, but they can be assured that they as  a caregiver will become very important part of their life.   

A CAREGIVER must maintain a great deal of patience when dealing with the afflicted person, as well as  with their friends and family  members.  Catastrophic illnesses and conditions tend  to upset the normal  activities of everyone involved, and at times they may unknowingly exhibit  hostile traits, especially verbally.  Keep in mind  that it isn’t really them talking or acting out, but rather it is the life  style that has been forced upon  them.

Let’s take a minute and look at  what a caregiver can expect as  time goes on while caring for someone who has  a progressive illness, such as  HD.  To do this I will speak in fair detail  as to what I have experienced  on my  journey through caring for Harriet.  You need to know that Harriet and  I have been married for 47 years.  We  have gone through college  together, have served in the Air Force  together, and have raised two daughters  together.  The operative word there is  “together.”   Being a caregiver is  just one more step in the long journey through life  together.  Survival in the world of Huntington’s Disease cannot be handled alone.  As the disease progresses, the role of the caregiver becomes  more constant and far more difficult.   

As a side note, I don’t want people to think that Harriet’s and  my life hasn’t been a one-way support program.   Back when she was healthy, I had stage 4 esophageal Cancer, and she never  gave up on me, never left me,  and was my major line of support  throughout our journey.  Support is a two-way street.  Both the person receiving the support, as well as the one giving it, require a great deal of encouragement.  In  a strong support system, the parties involved learn to lean on each other.

Let’s travel back to where our  HD journey began.  In the 1980’s  we found out that Harriet’s mother had this strange disease called Huntington’s Disease (HD) and that any children borne by her  had a 50-50 chance of inheriting it.  It was recommended  that Harriet and her 4 siblings get tested.  The four that we know got tested, Harriet and her two sisters plus one brother all tested positive.  Her  other brother to our  knowledge never did.

Harriet and I were told that she  probably had ten years left, and they recommended that our girls  be tested.  Our older daughter was tested and was negative, and our other daughter decided that meant she had  it and didn’t want the test.  One of Harriet’s sisters couldn’t handle  it and took her life, something that is common  in the HD world.  The other sister is still alive.  One of her brothers has passed on, and the other that wasn’t tested is still alive to our knowledge.

When we were told that it would be  ten years before I would lose Harriet, they didn’t  know that some awesome drugs would come along and help to slow the progression down.  It  has now been almost 20 years since the diagnosis.

So, now we have set the stage.  Let me get  us back to the caregiver’s role, and what they can expect as  the  disease progresses, with emphasis on what their roll ill be throughout..  Let  me insure you it won’t get  easier, but just knowing that you make a difference makes it very rewarding.

When we first learned about Harriet’s condition, and came face  to face with the knowledge that it denotes a very bleak future, we began getting any tracts, books, or magazine articles that we could find on HD and similar diseases.  Some painted a horrific picture, but some (the ones  we concentrated on) gave suggestions  on how to face the different  stages, and how to control some of the symptoms to  some degree.  We  learned  what activities to refrain from  because the disease itself is so tiring as it progresses.  We learned what HDSA  was, and what role it would play as time went by.  We found out that  it was important that we know  that not every neurologist really knew that much about HD, that we needed to be sure that whoever we choose was knowledgeable with  movement disorders. The way it  was  explained to us was simply that HD is like having both Parkinson’s disease (a movement  disorder) and Alzheimer’s (a mental impairment) at the same time.

The person who becomes a caregiver for someone with these types  of diseases needs to understand that  the actual person with the disease in many ways escapes a lot of the problems involved, because of the brains loss  of comprehension.  The caregiver,  however, is fully aware, and can  easily become  overwhelmed.  Watching  someone you care about, who is mentally and physically strong, lose their strength and agility, and at  the same  time losing their mental comprehension, is tough.  Be prepared for some mental stress and depression, and be ready to get a  doctor to give you  some mild anti-depressants.   

In order to be aware of what level of progression the person being care for is at, it is advisable that the caregiver ask some questions each  day, simple questions like “what is my name?”, “what day is it?”, “how many  children do you have?”  Be aware that sometimes, on a bad  day, you may be shocked by the answers you get.  Harriet has two daughters,  Norma and Brenda, and five grandchildren.  Yet, on a bad day, everybody is “Brenda.”   People tend to think that this must be her  favorite, but  in reality Brenda  was our most mischievous, so her name  got use a lot more.

People with diseases such as HD  live in a relatively dark world  and can become extremely depressed.  This is why interaction is important.  They need to be aware that people care.  They need to be included in  daily activities, whether its is just  watching TV, or even playing games.  We found two fairly simple games  that we can talk Harriet through,  which helps to make her feel  included and/or wanted.   

The most difficult thing about  dealing with people like Harriet, when you have known them  or been with them  for the better part of their  life, is watching the negative progression.  Harriet went through both high school and the honor role or dean’s list.  She doesn’t even know what  a grade of B or below looks like.  She served in the Air Force, was a sergeant, and was the administrative assistant to  her squadron commander.  She worked for large companies like Walt Disney  World, where she appeared to be just a clerk in a souvenir shop, but also had another role, as the one  that those of us who were in Security at WDW took  bags of items  that had been shoplifted to so that she could determine the  extent of the crime.  This was because she knew the price on almost anything that  we might have confiscated from the criminal.

It is very important that a caregiver is aware of their charge’s background, as it gives them  something to talk  about.  Too  many times a person  taking care of someone who is handicapped thinks that the most important  part of their job is cleaning, dispensing meds, or bathing them. BUT, if I had to pick the most important thing #1 would be  companionship and/or verbal  interaction.

UPDATE: On January 6, 2017, Harriet asked me for a kiss while  laying on a hospital bed in our living  room.  I knew  this wasn’t a good sign, but gave her the kiss, after  which she  closed her eyes and went home to God.  She had fought a good fight, had  stayed with us until she just  couldn’t take any more, and will always be remembered for her love for those around he