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pam.pinkham
pam.pinkham Member Posts: 7
edited March 2014 in Caregivers #1
Hello everyone ! My name is Pam and my step dad ( who I love more than life )has been diagnosed ( june 29th , 2010) with stomach and esophagus cancer . Just a llittle history here.... so please be patient with me. sorry if this is so long!
June 29th my dad underwent endoscope to check to see why he was having so much trouble swallowing , loosing massive amounts of weight, not eating, surgeon put in a peg tube as he saw the tumor but wouldn't tell us until the biopsy came in and put him in the hospital . well he went for his checkup and dr told us the tumor in his esophagus was very large and took up anywhere from a 1/2 to 2/3 of his esophagus. so then we were sent an hour away to the cancer centers of the carolinas. Saw a thoracic oncology surgeon. well then we went through the motions. EUS, CT Sccan, PET scan then was told that th cancer was in his stomach at that time. and they believed that it started there . then we went through 6 weeks of chemo/radiation. he did very well during that time as far as side affects. He never got sick but was fatigued and very exhausted as we had a 2 hour drive every day for 6 weeks with only sat and sun off. now that his treatments are over we have undergone the CT Scan and PET scan yet again. Tom. he goes to the dr to get the results. to find out if the cancer spread any during treatment and to see if he qualifies for the surgery they want to do which is to remove his entire stomach, most of his esophagus and reroute his colon. dr said it is a brutal surgery and very hard to recover from... durign this time he has been hospitalized 3 times for dehydration and bleeding and so far has had like 7 units of blood and the ct scan showed the tumor to be very large still.we had to take him to the ER last week as he was in sooooooo much pain and the liquid morphine and diurgesic patch were not helping at all . they were finally able to knock the edge off enough for him to be able to rest. so that is where we are at this point/

now a little history on me as the caregiver.... I WANT TO SCREAM SO BAD I CAN'T STAND IT. !!!!! and that just about sums it up ....
My mom's health is bad she has degenerative disk disease and right now the surgeon wants to do a cervical fusion on her neck but she want get it done right now because of dad and what he is going through.
5 yrs ago they adopted 2 of their grandson's , My nephews , who are now 10 and 5 yrs old. so not only have i had to move out to my moms property and take care of them I am also the guardian of the 2 boys. I do all the driving to appts , cooking, cleaning, grocery shopping, taking kids to school picking kids up, homework , boy scouts, 4-H, and my mother in law( who I do not get along with, we have had many altercations in the past ) lives with my husband and I as she had to have 2 of her toes amputated due to diabetes and drs want let her go home alone..... there have been so many time's during all this that i just wanted to throw in the towel .... I love my mom and dad more than anything in this world and would not change a thing about what I have had to do but sometimes it jsut feels like " i can't take anymore " .... and then I feel guilty for feeling that way . My dad has to eat through a feeding tube and I feel guilty eating in front of him but the kids and mom HAVE to eat. I have resorted to eating in the kitchen so he cant see me. I am so exhausted everyday when I go next door to my house I just want to fall in bed.. and then cant sleep cause I am too tired. if that make's any sense.My mom has seizure's and cant drive while taking those meds so I have had to do all the driving just to keep her from possibly having seizures. as stress triggers them.
I would greatly appreciate any input or advice you all can give me.
Pam in SC

Comments

  • smb96
    smb96 Member Posts: 4
    #2
    A few tips...hope it helps!
    So sorry to hear your story. I am new to the caregiver role, myself and trying to figure out how to cope and manage the every day stress of trying to take care of my mom, all of her matters, all while having a full-time job, a side business and other volunteer activities that I like to do.

    I might ask, do you have any siblings who can pitch in? I have two, and they are not all that helpful, but I mandate that they have to do some things, even little things to help take the load off of my plate. For example, my brother's job is to check my mom's mail every day. That's it! A simple task, but, it helps so that I don't have to drive to her house and do that every day.

    Second, have you gotten a patient advocate through the ACS? I have one and he is very helpful. They can help you coordinate transportation for your dad to his appointments, to at least give you a day off. They can also help you with so many things.

    Maybe put your nephew's in a big brother program so that way, one day a week for several hours the kids are with their mentor, and that might help relieve you for a little while and give you some breathing time.

    I have also started doing other little things that really add up to help me. For example, I order groceries online now and have them delivered. Yes, it is a little more expensive but to me it is so worth it. This way, that's one less thing I have to do every other day. I have also been calling on my friends - that's what they are there for. Reach out to your friends and ask for help. Even if you just need someone to make a few doctor appointments or sit with your mom and dad while you go and get a breather. Also, reach out to your community and see if there are any volunteer groups who can help you with cleaning. I had several volunteers clean my mom's house for her and it was such a relief so that I didn't have to do that. Call your local family services organization and they can put you in the right direction. Matter of fact, get one of your friends to call them - again, taking something "to do" off of your list.

    It really is important that we take good care of ourselves. It's difficult, I know, but it is vital if we want to be there for our loved ones during their time of suffering.

    Good luck to you.
  • Barbara53
    Barbara53 Member Posts: 652
    #3
    scream therapy
    What has worked for me is to drive to a vacant parking lot, roll up the windows, and rant and scream. Be careful not to stress your throat too much, tho.

    This is temporary. Keep reminding yourself of that.
  • pam.pinkham
    pam.pinkham Member Posts: 7
    #4
    smb96 said:

    A few tips...hope it helps!
    So sorry to hear your story. I am new to the caregiver role, myself and trying to figure out how to cope and manage the every day stress of trying to take care of my mom, all of her matters, all while having a full-time job, a side business and other volunteer activities that I like to do.

    I might ask, do you have any siblings who can pitch in? I have two, and they are not all that helpful, but I mandate that they have to do some things, even little things to help take the load off of my plate. For example, my brother's job is to check my mom's mail every day. That's it! A simple task, but, it helps so that I don't have to drive to her house and do that every day.

    Second, have you gotten a patient advocate through the ACS? I have one and he is very helpful. They can help you coordinate transportation for your dad to his appointments, to at least give you a day off. They can also help you with so many things.

    Maybe put your nephew's in a big brother program so that way, one day a week for several hours the kids are with their mentor, and that might help relieve you for a little while and give you some breathing time.

    I have also started doing other little things that really add up to help me. For example, I order groceries online now and have them delivered. Yes, it is a little more expensive but to me it is so worth it. This way, that's one less thing I have to do every other day. I have also been calling on my friends - that's what they are there for. Reach out to your friends and ask for help. Even if you just need someone to make a few doctor appointments or sit with your mom and dad while you go and get a breather. Also, reach out to your community and see if there are any volunteer groups who can help you with cleaning. I had several volunteers clean my mom's house for her and it was such a relief so that I didn't have to do that. Call your local family services organization and they can put you in the right direction. Matter of fact, get one of your friends to call them - again, taking something "to do" off of your list.

    It really is important that we take good care of ourselves. It's difficult, I know, but it is vital if we want to be there for our loved ones during their time of suffering.

    Good luck to you.

    thanks
    Thank you for the tips. I have no siblings around close enough to help out. My half sister who is no relation to my mom or my step dad has come here and uprooted her life to help me. We have the same real dad but different moms. she has been a godsend. and a heart of gold. It would also help if my husband would pick up after himself and take care of his own mom. but I guess that is too much too ask. LOL
    we spent the entire day in greenville today getting results of pet scan. we are having surgery on the 23rd for a resection of his esophagus and stomach. I love volunteering and so forth haven't been able to do that in a long time.
  • pam.pinkham
    pam.pinkham Member Posts: 7
    #5
    Barbara53 said:

    scream therapy
    What has worked for me is to drive to a vacant parking lot, roll up the windows, and rant and scream. Be careful not to stress your throat too much, tho.

    This is temporary. Keep reminding yourself of that.

    yea
    Girl I have done that and you are right it felt good for a few minutes....LOL

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