Wednesday, September 03, 2008

Caregivers, You Have to Take the Lead

As you begin your role as caregiver, Mother Nature automatically kicks in and you realize it is up to you to become the advocate for your loved one. I have found that this is definitely not the best capacity in which you will win friends and family, but it is one of the most important roles that you will ever have, as you do everything in your power to care for the patient. Sometimes, that might mean going to the extreme, but if that's what it takes, then that's what you do.

Many times over these past months I have changed my persona from a meek and somewhat mild human being to a caregiver who realized I needed to establish my own task force, don the commando armour and become chief of whatever it takes to protect and serve my husband in his Cancer Battle.

It will consist of worry and sleepless nights as you try to diagnose the problems and think of the what-ifs, a cell phone constantly by your side for those times when you cannot be there, and staying close to home, if at all possible. You become the director of medical records as you record appointments, tests and results. You follow-up when someone else forgets to call you back and you ensure that medications are readily available when needed for stomach upset, headache, pain, or the slightest cough. You learn how to take blood pressures, temps and give needles. You learn about which meds go with what aches and pains and you constantly keep abreast of every new drug test, reports and whatever might be just around the corner in case the present treatment is not working. When asked numerous times how I've gotten through this myself, I always repeat this quote "This is a journey that I would never wish anyone to take, but one for which I have been very blessed to travel". That says it all, for every caregiver is more than willing to do whatever needs to be done.

Ruffling feathers is a "given" and when this happens, you don't let it bother you. Do what you think is right at the time and what is best for the patient. As caregiver, you will have to set out the perimeters and the "way it will be" for others to sometimes follow.

In our family for instance, we have always stuck to the battle cry that neither I nor anyone else

will choose what route we'll take along this highway, for it is solely up to my husband and his decision alone. We support him fully and follow his lead. Many, will of course give you their suggestions as to what they would do in similiar situations, what types of medicine should be taken or types of treatment should be followed. We fully understand that people are only trying to help, but in the end, it's not my decision or anyone else's, it is solely my husband's! After all, he is the patient, he is the one who has to endure the results and he is the one who knows what is best for him.

Caregivers are not just one person in the is the entire family. My husband is very blessed to have two wonderful daughters who are always there for him. Together, we all encourage him to keep the faith, never quit and do whatever he feels is best for him.

I trust that by reading this website, it will provide information to caregivers and encourage them through difficult times. It is important to note that as caregivers we also experience the seven emotions of


loss of control,





My poem at the right of this website, will describe some of my personal experiences when I first endured the shock of my husband's "terminal cancer" and I'm adding the following link for additional information that will describe each of these emotions in detail to you when a person and their caretaker hears this life changing news.

As caregivers, we can all only do our best! It is not something for which we have been trained to do. Supporting each other is very important and if you are fortunate, as I have been to have met other caregivers in similiar situations, don't be afraid to ask questions not only about the patient, but also about yourself.

Remember, the most important rule of all is to "take care of yourself".....your loved one needs your support!


Anonymous said...

You said it !!! As I try to deal with my cancer, I have had similiar experiences with people who are constantly advising me to do what they think is best....good for you Debbie to finally put it here so that hopefully others will read and know how patients really feel.

Anonymous said...

I can tell from your story that your husband is one lucky man, to have such a loving and caring family to take care of him.
Enjoyed the read.

I will definitely check back.

Anonymous said...

This is definitely true. It is only when you take the role of a caregiver that you know`what the person struggling with cancer is going through.
There was be many hills and valleys to climb because of input of other family members and friends. However, as long as the caregiver knows that s/he is doing what is right for the patient, they are following the right path.
Family members and friends who have not been faced with such a situation do not understand what this journey is all about. The best thing they can do is provide support for the decisions that the person who is ill and their caregivers have made. Also, ensure that they are there when needed and visit those who are ill to show their support. It is important not to always bring up the situation because the person struggling with cancer does not want to continuously talk about their illness. Instead, s/he wants to try and live as normal a life as possible.
God Bless!