Primary Caregiver Dealing with Family Member's Cancer.
Caring for a Family Member with Cancer
The Diagnosis
It just happens one day. Someone in your life comes to you and says, "I have cancer.". It isn't something you have ever expected to hear but the words just float into the air and there is a sickening feeling you get at the bottom of your gut. It is really important to speak to everyone in your family to let them know what is going on. And depending on your situation you will either be tasked with primary care or secondary care. If you are tasked with secondary care you are on back up or on call 24/7 and you might be asked to go to the grocery store once every three months. Don't haggle over the bill. You are not in a primary role. You have very light duty in this situation. It will not feel like light duty but it is absolutely nothing compared to the person who is put in the primary role.
Try and imagine yourself as primary care giver and then once and a while provide respite/time off for the primary care giver. In all probability if you don't, your family will self destruct . As point of fact I think I would go in with lists of things to offer so you know as a secondary person you have supported your family member with cancer and the primary care giver.
Lists might include..
Do you want to take some time off for yourself perhaps a few hours a week?
Can I make a meal for the family?
Can I vacuum the house for you?
Can I service the car for you?
Can I run an errand for you?
These seem like really simple things but they make all the difference to the primary care giver who is up night and day caring for your family member with Cancer. It also gives you peace of mind that you have done or at least offered. The primary care giver maybe reluctant to accept your help as they don't really know how deep they are in so be generous. The aforementioned list is not all inclusive but it is a start. You will need to survey the situation and decide what would you could do to help the most.
I know you are thinking well hospice does all this. There are many instances where Hospice isn't called. You should work under the assumption it is a Hospice situation without Hospice.
Steps to Coping
Do you have a family member with Cancer?
Do you have a family member with Cancer?
The Primary Caregiver
If you are the primary care giver you have to take it one day at a time and a lot of evenings as well. There is no easy way to negoitate Cancer. If anything Cancer is a wild fire burning out of control within your loved ones body. Being in the moment and having the attitude "Now" is the most important factor is critical. Because "Now" is all you have. Keep notes on diet and medications even if the person you are caring for doesn't want you to. Cancer patients can become paranoid and confused from pain medication and disease advancement. Your notes are about the only thing you will have as a reference for what works and what doesn't.
Try if at all possible to maintain social contacts. It is difficult because the worse the person you care for becomes the more consumed you become in the caring. It is like trying to thread a needle with gloves on blindfolded. It is really important you always be vigilant. Inherently, with all the medications in your home, it becomes dangerous. You may have one or more family members who have a break down. As primary care provider your job lasts until 1) the person you care for is in remission 2) the person you are caring for is placed in Hospice care. The level of stability and strength that you must have during this time will be incredible so it is important you remember to eat, breath, walk and remember the big picture. In all probability your family member with Cancer needs your love. They will be attached to you for their existence. Emotionally and physically they will need your strength. With safety of the entire household as the first priority you must be loving, calming, almost jovial, exceptional persistent and consistent. It is a marathon.
Since maintaining your normal soical relations will probably become strained I suggest you develop a support network. It is really difficult because you are consumed in the battle of cancer and no one really wants to hang out with primary care givers of a person with cancer. Believe it or not those primary care givers can be quite serious with regular folks and things that are superficial seem exceptional superifical to someone caring for a family member with cancer.
I also suggest primary care givers make survival plans in the event their family members passes. Please don't think it can't be you. It can be anyone and everyone. A reserve of cash that no one knows about and preparation for complete separation from your entire family is what you have to be prepared for. It sounds drastic but it happens and more often than anyone cares to talk about. It is an unpleasant subject when families fall apart from prolonged illness but it happens.
It especially happens when the person with Cancer is suppose to be in remission and they aren't. It is called a misdiagnosis, it happens all the time and it is especially tragic in cancer.
Ever Been Misdiagnosed
Do you think misdaignosising cancer remission destroys families?
Old Endings and New Beginnings
If you are the primary care giver in a situation caring for a person with cancer, you have to make plans of how your life will rebegin after the lose of your loved on. This emotionally can be very diificult because the thought of starting a new life without the person you have cared for so diligently will seem like betrayal. But once they are gone your life is restarting again anyways. Your option will be to maximize your choices as it will not be an easy process because you will have to put your own thoughts first and not the needs of the household. Progress begins slowly after the loss of a family memeber from cancer.
Once they have past do a complete perimeter analysis of your home. Chances are there are chemo pills and narcotics lying around all over the place as well as blood and other bodily fluids depended upon the particular cancer.
To rid the house of the smells I suggest opening all of the windows. Light and fresh air kills many bacteria. Scrub the house from the top to the bottom. Safety is the key priority. Secondary caregivers can help.
Death is an old ending but you will have to create a new life. You will have many decisions after this point. I have tried to elude to many of them in this article so you might be prepared as a primary care giver or a secondary care giver. After the death of the family member with cancer you will feel a sense of relief and then guilt for feeling relieved. Let that go. It is not guilt you should hold onto. You have been through a heroic ordeal so feeling relieved is very normal. A friend who recently lost her husband told me it took her one year before she could even deal with socialization. It was very difficult for her to go to places her and her husband shared...the old haunts so to speak. It is true.
You will be completely raw and every experience you have will be new. Because each day you will try to carry on with what feels like a hole in your chest and you will realize your family member took a piece of you when they past. You will never quite recover but instead you will persist. How you persist is in the planning and I am suggesting you be planned for events that the oncologist might not inform you about. I believe the argument is that if the person is diagnosed with cancer then the family has been on notice that Death is on the menu and that will always be the oncologist's attorneys opinion but in society the belief is when hospice is called death is eminent. You must be prepared for everything and anything.
As overwhelming as that might sound it will be essential for survival. And to expect everyone to behave through grief of the loss of a loved one is just not rational nor realistic. It is grief and by everyone can misbehaves.
In Cancer
Are you....
Best Gift to Primary Caregiver
The best part of being the primary care giver in a cancer situation is that when your loved one dies you have not guilt. You have done everything to the point of collapse. You will be exhausted but the extent of exhaustion should console you as to the amount of care you have provided. Starting over will be difficult. 1-3 years is the general rule for primary care givers. And it is a defining role. You will also need to forgive a lot of people in your life. Just because Cancer is an unpleasant conversation topic doesn't mean your friends shouldn't have had your back or listened. The people who didn't help you know who they are. You just have to forgive them because anger will eat you up.
I also reccomend and exercise routine, idealy before the loss of a family member. I believe in Chocolate. Diet is important and mainatining your health is vital.
As a primary care giver you are absolved.
Cancer Coping
This article started with coping with cancer. Well that is just the problem. You really can't be the an effective primary care giver of a family member with cancer and cope. It is one or the other. Secondaries have it down to a science. That is why Hospice is funded and is all around. It is readily recognized when a family has a member with cancer it is a social problem for the entire family. Sadly few oncologists have endured having a family member suffering from cancer nor have they ever had to actually care for a cancer patient day and night directly.
Unfortunately, many people are not referred to Hospice because they and their families are not properly cared for in crisis and thus creates a social disaster. Their homes are made unsafe and the entire family is subjected dangers because of oncologists failures to recognize and refer terminally ill cancer patients to hospice. It is a social disaster that is avoidable.
The more the primary over compensates to cope with cancer the longer their recovery will be. Quite literally, the primary care giver sacrifices themselves entirely in an attempt to compensate and save the family member with cancer. Literally, the more care the less coping which leads to a long recovery process for the primary care giver.
If you have time you aren't a primary care giver.
If you have time to read the books listed here within you aren't a primary care giver. The primary can't watch TV, read a book or even find the time to bath. Primaries are working until they drop. They have made every moment count. They have entertained, amused, endured and preserved in harsh circumstances.
These books are recommend for secondaries and other family members.
Bottom line is that there is no coping while your family member has cancer.
Alex Lost His Nana
Update
From the ashes of our former life we have forged a new life but not without pain. I had many health issues and still have health issues associated with putting myself last in our lives. But my son and I are happier together now. We have been through something horrendous and we are starting our lives over.
We have moments filled with joy and the sorrow is every fleeting. This Hubpages account is a living memorial to my Mother and in her name so she will live forever on the Internet. That hole in my heart has been filled with public service helping disadvantaged people in our lives. Even my son does public services so our old life is dead and now we are onto our new life. It is not the same but it is what we have and well worth living,