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A Full time Job, that you have to do with Love.

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

When Jack was dx a year ago I was working full time, an now I am still working but 24/7 , Jack has head and neck cancer which has met to his liver and lungs, but we are still fighting the fight, Jack just got out of the hospital again he had to have a trachea, and I watch everyone who came in his room, the nurses to do his vital, housekeeping to clean the room and change the laundry, the respriatory nurse to check and his trachea and keep it clean and the dietian to make sure he is getting all his calories, well I am now that person all in one, plus keeping track of his pain medication, and it is such a challenge with the food, I try to feed him every 3 hours, when he is awake, ( he has a peg tube ) and my goal is too keep the weight on , now I love Jack with all my heart, but I get tired, I have learned to sleep when he sleeps, and then you have to deal with the family who thinks you are not doing it right, and want you to read every book out there about, caretaking and preparing for death, I don't want to read the books, I know they mean well and my friends try to be there, but they are not here 24/7 they are looking in from the outside, and on top of it all he has bipolar which is a challenge in itself, So my day starts at 530 when Jack gets up and it is an all day thing of making sure he is ok, he has all his right medication, and getting his feeding in and the trachea in it self was an experience, I had to learn to take care of it, It fell out once, scared the crap out of me. We have learned to learn from experience and every day things, But sometimes I feel like Im lost, I told Jack the other day I want my husband back. I want things noraml again, but Cancer has taken that away, but they do say cancer can not take the love away and I can honestly say it has not, Im just afraid what the future holds,

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

It's ok to want your life back before cancer & it's ok to tell your family that they don't
know everything. If they want to know invite them to spend a day with you and see what it's like.

My name is kathy and my husband has stage 4 esophageal cancer which hopefully will be operable after some more chemo treatments. He was diagnosed this May and there isn't a day that goes by that I don't want my old life back.

He does not have a feeding tube as of yet but keeping track of what & how much he eats every day, and his medicines and all of the fun stuff lol! Is very difficult!

I am glad his family understands alot and tells me what a wonderful job that I'm doing with
him. They worry about me which is great because the wouldn't want to be me for one day. I
know they would do it if I asked.

As for them wanting you to prepare for you husband to die there is no way to do it.
My best friends mother died from breast cancer & we knew she was going to die but you can not prepare youself for when the time come, you always want more time.

Kathy

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

His family has there days, Jack and I have only been together over a year, I met him and then 3 month later we found out he had cancer, but I did not walk away, and they all judge me becasue was his ex wife told them and now I have to prove my self to them, yea now, they tell me we are so grateful that you are taking such good care of him, But I still feel there are days I have to prove my self and we had our own apartment and it was not big enough for all his medical equipment so we moved in to his dad house, and I know it has been best for Jack, but his sister has contol of us, and I worry about what is going to happen to me if something does happen to Jack, where wil I be, I have no family here but Jack, and his sister tells me this is not about you Patty it is about Jack he is the one with cancer, Im scared for the future,

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

Is there any way that you and Jack can get your own place? Even if you could not fit anything but his medical equipment and something to sleep on. I can not even imagine being my husbands caregiver with someone hovering over me in judgement...just too stressfull on top of the already overpowering stress of being a caregiver. I am so sorry that someone else is basically in control of the situation. "You do matter, Patti. You are there for Jack but you also have to protect yourself and that includes what will happen to you when [ hopefully a long time from now ] something happens to Jack. Please do not count on them to look out for you. Have a plan in place for yourself, stay strong, and don't let anyone overpower you emotionally.

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

we had our own apartment and it was nice, the situation was crazy when Jack and I got together, he just left his ex I had my own apartment he moved in with me and his family let his ex stay with Jack dad, but it all went south with his ex so they kicked her out, and we got a call and said you are moving in with Jack's dad, and Jack felt so bad for his dad, we did not even think things through, and Jack did not get to spend alot of time with his mom before she passed away on Christmas due to his ex wife living with them, So Jack wanted to stay with his dad, and his sister has promised to let me stay her as long as I need ,if something happens to Jack, but alot has changed since we move in , Life is hard enough being Jack full time care taker , and we did not get any help from anyone before, now we get help but under there terms, We did not have a car when we were on our own, and now we do, and Jack has more room, and he sees his dad, but I am so afraid of the future, I cam out to texas a year ago with nothing and started all over and I did it, I just dont want to do it again, Im just going to save all the money I can to make sure I can live 3 months and pay the bills, on my own that is all I can do, My emotions are shot, All day and night I take care of Jack and constantly asking him are you ok, I just wish someone would ask me if I am ok. Now I have to try to explain to his sister why the dog ate a piece of the carpet, you know I was just content in my little apartment , Cancer would be just so much easier it we did not have the addionaly stress, Am I over reacton, is it me, Maybe I am the problem , I just cant deal with all of it, I want Jack to be confortable and happy and if it is at the expense of my emotions I guess I have to deal

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