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I don't know what to do (20 year old "caregiver")

Monica_
Posts: 2
Joined: Feb 2013

I'm not really sure where to even start. At the end of January I found out my mom has cancer in her uterus. So they decided to do a hysterectomy and also an exploratory because she had a lump on her stomache below her belly button (this was all on the 7th). I really thought everything would be fine.. The surgeon came out and told me that my single parent mother has stage 4 cancer, and that they plan on treating her with two types of chemo and radiation for the lymph nodes she couldn't remove. Well my "dad" decided to come up from Florida for the surgery (although he missed the actual surgery part) and a couple of days after the surgery he decided that he needed to "open my eyes" and basically tell me that my mom is going to die. Of course I got very defensive and somethings were send and he decided to basically disown me. I have not heard from him at all and he only has contact with my mom. Anyway, for about a week I was driving 82 miles a day from our house to the hospital and back and she just seemed so healthy I just couldn't accept that she has cancer let alone stage 4. On the 11th she got discharged home. She was having shortness of breath but she has had a respitory problem for a while (bronchiolitis obliterans organizing pneumonia). On the 17th she just wasn't doing good so I finally was able to convince her to call the consulting nurse who then sent her to the ER. Well eventually they found out that she has a blood clot in her lung. It just seems like everything that can go wrong, has been going wrong. She is still at the hospital and I have no clue when she will be discharged..

My mom is my best friend and the only person who knows everything about me. My mom has dedicated her life to being a nurse and mom to me. She is the nicest, sweetest person you could ever meet. She never puts herself first. I just don't understand how this could happen to her. She is super unselfish too so she wants me to continue going to college and I really thought I could handle it but now I am starting to suffer from insomnia and anxiety, and I'm just not sure I can handle it but I don't want her to feel guilty if I did drop this quarter.

It's just so frustrating how so many people around me are telling me that my mom is going to die. The doctors haven't said that.. I am just so scared.. I really can't lose her, she is all I have.

Hybridspirits's picture
Hybridspirits
Posts: 189
Joined: Nov 2012

Monica

I am so sorry for what you are going through.  I myself was diagosed with uterine cancer and have children your age and a little older.  My daughter like you is my real best friend.  This is hard and you will hear lot's of information from many people.   The word cancer is very scary to many who really don't understand the disease and it's opportunities for beating it.  The most important thing to do is listen to the dr's.  They are the ones who are there for you and understand treatments.  There are a number of stage 4 survivors and I am sure you will hear from some on this website.

What I have learned through this journey is to ask as many questions and the most important one:  what can your mom do to beat this.  If at all you want to make sure you have the right treatment option, never hesitiate to go for a second opinion,  Most dr's support this and even invite this.

 

You will also need to be strong and positive as it is very important that you mom stay positive as well.  

 

take care and hang in there while others on this website share

 

Sharon

 

Monica_
Posts: 2
Joined: Feb 2013

Thank you Sharon for your support. Your reply makes me feel a little better. I am always really careful about being strong and positive around my mom. It's once I get home when I tend to break down and think about what people have said.

I have been really bad about coming up with questions to ask, but I like your question about "What can my mom do to beat this", I think that is really good and I will be sure to use it.

 

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

Monica, what's important is to confront the fact that she may die while you at the same time maintain hope for her and for you, every day. Each of us is alive as long as we're alive, and it's important to savor that, and to find ways to bring her joy every day. Her desire to see you continue in college is probably her way of saying that she's proud of you and what you're doing, and that gives her joy because she'll know that you'll be OK.

You may want to consider having a candid conversation with the doctors, perhaps without her in the room, but also to talk with social workers. Your father's role is obviously not helpful, and so you would do best to "erase" his impact on the situation.

Your instincts that she should go to the hospital were spot on. Continue following them. You might also want to check with the American Cancer Society to see whether there's a Hope Lodge facility near your mother's hospital. These are lodgings that are free for cancer patients and their caregivers. You'll find a supportive community there of folks who will let you talk about the cancer as much or as little as you want, but most important, they'll be going through what you are, and it will save you driving for situations when she needs daily treatment. As long as you're more than 35 miles away, they'll admit you, as long as they have room.

Best of luck to you. I'm sorry that you're having to face this kind of challenge at such a young age. You'll get through it, and you'll be surprised at your own strength and resilience.

 

Debbie

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

Monica, what's important is to confront the fact that she may die while you at the same time maintain hope for her and for you, every day. Each of us is alive as long as we're alive, and it's important to savor that, and to find ways to bring her joy every day. Her desire to see you continue in college is probably her way of saying that she's proud of you and what you're doing, and that gives her joy because she'll know that you'll be OK.

You may want to consider having a candid conversation with the doctors, perhaps without her in the room, but also to talk with a social worker. Your father's role is obviously not helpful, and so you would do best to "erase" his impact on the situation. Social workers can help you deal with these conflicting pressures and with the conflicting guidance you feel you're getting. Just remember: Your doctors know best, but they'll be reluctant to deal with the topic of death and dying and to give a prognosis, because they won't want to undercut your hope. They may avoid the topic because they don't know anything for sure, so don't give up.

Your instincts that she should go to the hospital were spot on. Continue following them. You might also want to check with the American Cancer Society to see whether there's a Hope Lodge facility near your mother's hospital. These are lodgings that are free for cancer patients and their caregivers. You'll find a supportive community there of folks who will let you talk about the cancer as much or as little as you want, but most important, they'll be going through what you are, and it will save you driving for situations when she needs daily treatment. As long as you're more than 35 miles away, they'll admit you, as long as they have room.

Best of luck to you. I'm sorry that you're having to face this kind of challenge at such a young age. You'll get through it, and you'll be surprised at your own strength and resilience.

 

Debbie

Shellyd2u's picture
Shellyd2u
Posts: 1
Joined: Mar 2013

Like you I am a caregiver to my best friend, and I was having such anxiety and would cry at he drop of a hat.  My husbaand has malignant melanoma have it got to the point he noticed the red eyes, anxiety, ect.  I called my Dr and was able to get medication to calm me so I could focus and help my husband to make the tough decisions.  I feel better, the anxiety has subsided and now I'm stronger for him..I'm not saying that everyone going through this needs MEDS but I am saying that it takes the edge off to help you be stronger and deal with some tough decisions.  I hope this helps..

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Welcome to the boards none of us ever wanted to be on. I'm sorry that you and your mother are having to deal with this. None of us knows what the future will hold. We all live, and we all die. In between, we need to do the best we can at the time. What you should do is whatever is right for you and your mom right now. People who tell you that she will die are right. So will they. When my husband was diagnosed with stage 4 colon cancer, the doctor told us that his cancer was  treatable, not cureable, and life shortening. The literature at the time said he had about 22 months. We were blessed with six years. New treatments and protocols are being found everyday. For many cancer has become a chronic disease. When I told our pastor that we were just buying time, he pointed out that that was what all of us were doing. I learned that time is very precious. If we spend too much time worrying about the future, we fail to appreciate the now. Also, none of us has an expiration date stamped on us. Miracles happen daily. The next time someone tells you your mother is going to die, suggest that they will, too. 

it sounds to me like you are doing everything right. If your college has a medical center, it might be a good idea to check in with them. Many also offer counseling services that you might find helpfull. Ask about support groups. There is no shame in asking for help. You are in a stressful time. I know I needed support and was lucky to have family and friends nearby. Come here when you need our support. That's why these boards are here. Many here have dealt with many of your feelings and concerns. You are not alone. Fay

mzlisaj's picture
mzlisaj
Posts: 14
Joined: May 2013

Fay, for the laugh...."The next time someone tells you your mother is going to die, suggest that they will, too."

 

I needed that.  People say the dumbest things....I am learning that.

sharpy102's picture
sharpy102
Posts: 357
Joined: Apr 2009

@mzlisaj: I know what you mean by that...I hated when people were saying "you know, your mom is going to die" That was the last thing I wanted to hear and I wasn't thinkin like you did at the time as a 12 years old, but more like respond to thm as "No, you will!".

@Monica: You need to be by your Mom's side and be very strong. For her. I know very well how hard the whole situaton is. I was also a "caregiver" when my Mom was sick since my dad and my brother has passed away by that time. And I was only 12. It was hard, very hard. But you can't ever show her fear, weakness, or giving up. You have to fight for them with every ounce of your being! I wish you strength, and big big miracle and improvements to your Mom!

Please take care!

mzlisaj's picture
mzlisaj
Posts: 14
Joined: May 2013

How is your mom doing?

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