Tuesday, April 19, 2011

Caregiving from a Caregiver's Perspective - Part One

Part One – Home Caregiver

This is the first installment of a 4 part series of information that I hope will be helpful for family members who are a primary caregiver 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 through out 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 disctracted 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.


  1. I was a caregiver for my husband for his last year through the final stages of lymphoma. It is a very tough job but I did it with love and I would gladly have kept doing so if necessary. That is what the 'in sickness and in health' means in the marriage vows.
    I will be looking forward to further installments.

  2. Thanks Beth. I agree in part with you, but believe it goes deeper that wedding vows. I believe it's the right thing to do. On three different occasions, I was able to tend to my Dad and the last one was clearly the most challenging - his last week. I would not change those three events for anything. It was my opportunity to tend to him. He did the best he could for his children not because he might need care later, simply because it was the right thing. That lesson has stayed with me all these years and proud that he taught me that along with other good life skills.