In April, Diane began sharing with KISBYTO readers her story as a caregiver for her husband David.  We are going to repost the first few parts and the remaining pieces to this story over the next couple of days. We will also provide this a little later in one report in pdf form.

A wife, mother, nurse, friend, daughter whose life is turned upside down a few months after her marriage and becomes her husband caregiver for the next fifteen years until his tragic death in November 2010.

Introduction

Diane Forrest received her license in nursing in 1993 at the age of 30.  She began her nursing career as a single mother working in the orthopedic department in a local 180 bed hospital.  After a few years she started working part time with a home health agency in addition with her hospital duties. She married in July, 1995 to a wonderful man.  Tragedy struck in December that year when he was injured at work the week before Christmas.  He ruptured 3 thoracic discs that immediately caused numbness in his "saddle" area and would eventually leave him paralyzed from the chest down.  As his conditioned worsened, Diane had to leave her employment and stay home to take care of her husband.  In 2008, he acquired a decubitus ulcer from sitting on an improper wheelchair cushion.  He was placed on bed rest to allow the sore to heal, and even though the sore healed after 6 weeks, he lost the use of his arms, and was never able leave the bed again.  She remained by his side taking constant care, providing medical attention, ordering supplies, dealing with insurance companies and attorneys, doing the cooking, cleaning, house maintenance, yard work, and mother to their combined 5 sons without the assistance of outside help.  On November 10, 2010, her husband passed away from sepsis, an infection in the blood.  He was 52 years of age.  Diane now is sharing her experiences and expertise to others who face similar challenges in their care giving roles.  She welcomes any questions and comments and can be reached through this blog.

Part One – Home Caregiver

This is the first installment of a 5 part series of information that I hope will be helpful for family members who are a primary care giver at home.

The task before you is sometimes a very overwhelming one, and at others a very rewarding one.  Your primary goal is to assist your loved one in reaching the optimum level of care you can provide by keeping them healthy, safe and happy for as long as possible.

The first way to start, as with any new situation is to listen.  Listening is a lost art.  If you don't believe this, try going through the drive thru at McDonalds and see if you get what you order.  If you have ever played the game "gossip" you know that a group of people sit in a circle.  One person starts by whispering something in their neighbor's ear.  What one person starts the game saying ends up as something totally different by the time it reaches the last person in the group. 

When you are taking care of a person, it is not only important to listen to what they are telling you, but to HEAR what they are saying.    There are many distractions in the world today.  We are bombarded by all kinds of noises, technology, and information.  It's a wonder we can interpret our own thoughts, much less the needs of another. 

I am a nurse who has had the opportunity for the past 13 years to be the primary caregiver for my disabled husband.  He would always comment about how fortunate he was to have a nurse for his wife, and I of course always agreed with him.  My education and experience allowed me to constantly observe him and become aware when there was the slightest change in his condition. 

When charting in a medical setting, they have a formula called SOAP charting.  S: Subjective; O: Objective; A: Assessment; P:  Plan.  Subjective means what the person tells you.  It is very important that your thoughts and environment is clear of distractions when you communicate with your loved one.  If the TV is playing, or phone ringing, or dog is barking, or kids screaming, you are not focused on what information your family member is giving you.  Set aside a particular time, such as morning medications or breakfast and ask pertinent questions about the health of your family member.  Questions like how did you sleep, how do you feel, any new problems this morning, do you need anything, would you like something are useful to determine any changes in condition.   Follow this routine throughout the day; changes can occur at the drop of a hat. 

Not only do you need to communicate to find about their condition, but also communicate during the day to provide stimulation and prevent loneliness.  During the past 2 and half years, my husband was bedridden.  It was very difficult for him; he was only 50 years of age when he was confined to bed.  There were many frustrating days.  He would want to talk, and I would be busy with my own tasks.  Each of us at one time or another "pretend" to listen while we are focused on another activity.  Experience has taught me when my father is watching his television program, it is best not to speak to him until a commercial comes on.  He will not listen, and on occasion get mad cause he has been distracted during a critical point in his show.  Make sure you set aside blocks of time to just sit and talk and listen.  Also encourage visits with other family members and friends as well.   Being bedridden was a good opportunity for my husband to reconnect over the phone with old friends and family members he hadn't spoken to in years.  He was able to share memories and make new ones, things most of us never seem to find the time for these days.

Listening will also give you information that you will need to share with the doctor.  Not only can your family member alert you to changes they are experiencing, such as difficulty breathing, changes in heart rates, or a new pain or discomfort.  But you can also be alerted to any confusion and disorientation which should also be reported immediately. When my husband started talking about the bugs that were crawling on the wall I knew things were not normal, and after further testing I was able to determine he had acquired a severe kidney infection and called the ambulance to take him to the hospital where he was treated without any major complications.

Your loved one is depending on you for their care and well-being.  Make sure you listen, and hear their needs and concerns.  Proper communication will not only alleviate their concerns, but will give you comfort in the knowledge that you have provided for their needs and provided the best possible care.