Primary Caregiver Dealing with Family Member's Cancer.

Caring for a Family Member with Cancer

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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?

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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

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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....

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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

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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,

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Comments 6 comments

Fruitloop2011 profile image

Fruitloop2011 5 years ago from Nashville, TN

My husband told me those words over a year ago. I went through it all. The kemo, the sickness, throwing up. I had to take complete care of him, but sometimes when he first went , sometimes he would sleep 3 or 4 days.

I would have to wake him for food, meds, take his temp, and make sure he didn't get dehydrated. I cried a lot, and worried a lot. The house had such a deafening silence.

I would advise to pray, pray , pray! I never wavered in my faith. He is cured for now. He got invited later this month to a cancer survivor dinner. I certainly don't take him for granted anymore.

I will pray for you too!


jt walters 5 years ago

I am so glad your famly member has survived. Mine didn't. Yes, I did the same and much much more. I use to sit up and make certain my family member didn't stop breathing and then stay up all day to take care of her. I have been sleep deprived I doubt I wil ever sleep normally again. It was instinct. I had not been advised her caner had spread to her lungs. I just knew by the way she breathed she could stop at anytime.

The survival package is what I would like you to have in mind as you move forward. Because we were told "cured and survivor" only to find it was prolonged death. As the author I would like you to put yourself survival package in order just in case "cured" isn't actually cured for your husband. I spent a lot of nights up taking care of cured and cured really hurt horrifically.

I don't mean in anyway to upset you but instead what you to have your survival package in order in the event your husband conditions grows worse.

Thank you for the prayers. We need them. I will say some for your family as well.


Fruitloop2011 profile image

Fruitloop2011 5 years ago from Nashville, TN

I am so, so sorry. I will keep the survival package always in my mind, as my husband has already told me that once you have it, it is never gone and can recur at any time. He says, "It's only in remission."

I am so sorry, and I will never forget you, and you will always be in my prayers. Email me sometime at countrygdreamer@aol.com


jt walters 5 years ago

Don't be sorry it is apart of life. There needs to be more research into the causes of the disease and better "cures". Yes, it was "cured and we got it all" until it was back then I heard the story of it was only in remission.

The really bad part is I wanted the family member to got to hospice because I saw it as a hopeless cause to begin with. Stage 4 is really advanced when diagnosed especially with rectal cancer. Survivability odds are exceptionally low at that stage.

We had only a few weeks together after we were told the cancer had returned. And the Hospice referral came way to late just three days before my family member died. Against the advanced directive antibiotics and fluids were given so the rest of the family could make it to town to say "goodbye" but she was gone.

Your husband can probably help you design your survival package. I would suggest safety people who are in your inner circle that can be called upon in the event this may happen to you. Make your support network now while your husband is in remission and make your survival package.

I write on the topic of Cancer a great deal. I have done quite a bit of research in the area of. I was a researcher once upon a time so I have that background.

And you and your husband will be in my prayers as well. I get it and I understand you are trying to be so positive in this situation. We all are and that is why the survival kit is not made because we are being loyal and positive. You can be positive, loyal and still make that survival package.

Stay connected with me. I want to know how you are doing and know you have a friend in me. It is really important that people who have been through this share with people who are going through it so we protect each other. Believe it or not...Cancer happens to the whole family whether you have it or not.


ladyjojo profile image

ladyjojo 5 years ago

Cancer is such an evil killer sickness is of the devil. So sad to see how it devours human beings. Its one of the worst diseases.

May God keep me from that i always had a fear for cancer

Thanks for sharing


JT Walters profile image

JT Walters 5 years ago from Florida Author

Hi ladyjojo,

I do want God to keep that out of your life as well for me I am surrounded both of my parents have had it.

JT

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