My worst nightmare... again.

AshleylouG
AshleylouG Member Posts: 2
edited April 2015 in Caregivers #1

Hi everyone. My name is Ashley, I'm 24, and a caregiver to my mother, 60, Charlotte. In November 2012, my mom was diagnosed with throat cancer. In January 2013, she had a total laryngectomy surgery (also removed lymph nodes) to remove the cancer along with 32 radiation treatments. That August, all of her scans came up clean. Through all of that she lived with me and I learned how to do everything from the simple stuff like using her PEG tube to doing suctions, once she was fully healed, through with radiation and learning to talk again she moved back into her home. Surgery went well, and she healed very quickly. She was only in the hospital about 10-14 days, and was already back to her normal self shortly after coming home. Radiation went amazingly, she didn't have any of the nasty side effects and even GAINED weight. I felt like I should be given a medical license after everything I learned how to do with very little assistance! 

She did have an in home nurse, but they were absolutely terrible and did very little. It seemed like none of them knew what to do aside from take her blood pressure and ask if I had everything covered, which I did, thank God. I learned fast and was able to put my squimish side away and do what needed to be done. It was a long ordeal and very hard on us both. My parents are divorced and my father was not in the picture (other than to cause more trouble and stress that my mom DID NOT need), and I have 3 siblings, but none of them were willing to help. No one really wanted to "disturb" their own lives to help, despite all my mother has done for them... I mean she gave them life, come on! So really, it was just me and mom fighting the battle the hardest we could.

After over a year of good news, sadly, we discovered the cancer is back but in the upper left side of her neck. This is our worst nightmare, and while we always knew it was a strong possibility, it still feels like a huge shock. It was hard enough to believe it could happen the first time, but a second? It took from September until this passed Friday to finally get an answer. Something had been coming up on the CT scans, but she had 3 negative biopsies... 1 going in through her mouth, and 2 needle biopsies. Finally, because the CT had gotten worse, they cut her from the outside to take a biopsy and it was confirmed.

The doctor had basically explained to us that while it was pretty bad, she was lucky in a way because she is fairly healthy. No pain, no weight loss, etc, and it isn't in or near the stoma or an artery, so he told me he believes he can surgery. They would remove it, along with a portion of the front left of her throat using her arm to reconstruct everything. He said he had already spoken to the other doctor that would be helping with the surgery and he agreed, but he's going to present it to the board and discuss her case on Thursday. I'm so terrified they're going to call me and tell me they can't do the surgery for some reason, or feel like it's not worth it.

An added bit of fear and stress stems from mom wanting to go over her legal forms... will/health care surrogate/etc, and I know that's all very important and great to have, it's very hard to discuss the possibility of me needing to make her medical choices and all of that. It makes me feel "immature" or something for even saying that. It just feels hard being so young and having such a huge responsibility over someone else. Sometimes, I wonder if I'm strong enough for all of this again but then I remember I AM my mothers daughter, and she's the strongest woman I know.

I'm just flat out terrified, but I've completely shut off my emotions. I feel like I HAVE to. I don't want to be sad or upset around mom and I don't want to let myself really feel this. I'm 1 of 4 children, but like last time, none of them will be helping me. I feel very alone. I'm really the only person my mom has, and I have a very, VERY small support system for myself that I can count on 1 hand. Last time I was able to keep a brave face for my mom and cried when I was alone. I know I have to take care of myself but I don't know how I'm supposed to do that. She is my main priority, she always has been and always will be. We're very close and I'm so scared to lose my mom. Right now, as long as I'm busy, I'm okay. I'm in fight mode and doing everything I need to do to get this taken care and make sure she's okay. She's handling the news very well. She's brave, and trusts her team of doctors and me to help her, but she just keeps apologizing to me. I know she feels guilty that it all falls on my shoulders, and while it is SO hard, and SO scary, I wouldn't have it any other way. I've been here since day 1. I just feel like if something happens to her, I'm going to totally lose it because my "method" of handling this isn't exactly healthy.

How do you guys manage your lives in this situation? Her hospital/doctors are a little more than an hour away, so when/if surgery happens I'll most likely get a hotel room near by to make it easier. Between work (I had to quit my job the first time she got sick, but thankfully now I work from home so that makes it easier) taking care of my home/errands/animals, and my mom's home/errands/animals, a very distant husband, taking care of my mom and just day to day life... I just don't know how to do it all! And I feel so guilty even saying any of this, I feel like it's wrong of me to be worried about these kinds of things right now.

Anyways, thank you to anyone who read the ramblings of a scared person at 1am!

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Your Mother

    So sorry to hear about your mother.  She is one brave fighting woman.  My husband was first diagnosed with laryngeal cancer and underwent radiation, chemo and then surgery to remove his voice box, reconstruction his throat and partial neck dissection at the age of 74.  He was only in the hospital for 6 days and healed great.  He did everything for himself, wouldn't let me help him.  We have 4 sons and many grown grandchildren but none of them helped whatsoever so I know how you are feeling.  But you need to take care of yourself too because you are important.

    A year later he was diagnosed with a second primary at the cervical of his esophagus, surgery was ruled out due to the previous radiation and surgery so he underwent more radiation and chemo.  He was declared NED for about 8 months when we found out that the cancer at the cervical of his esophagus had reoccurred and spread to one of his lungs.  He said enough was enough and declined any further treatment.  Only thing offerred was chemo and we were told upfront it would only prolong but could hasten his time.  Two years later he is still fighting but loosing his battle daily and it is hard to watch.  He still does everything for himself, just won't let me help him.  I do keep up with his medications and try to help him with his feedings but he still wants to do it for himself.  I can honestly say that I don't look forward to cleaning his stoma when he isn't able too.

    I would definitely get a second opinion before having your mother undergo more surgery.  Due to her previous radiation she could have problems healing.  As far as legal papers, definitely she needs to get them in order.  My husband can't talk, uses an El to speak with when he can, and has been on a feeding tube for the last two years because he can't swallow due to the tumor and all the radiation he has undergone and the damage it has done.  He has given me power of attorney over his healthcare (basically over everything) and he has a DNR order on file with hospice.  These things were hard to discuss and do, but a necessity.

    Caregiving is hard and there is no question about that.  It is a shame that your siblings won't help but in the end their hands will be out, that you can count on.  Been there, done that.  You need to discuss this with them and try to get their help because you have a life too.  You may need to talk to someone about your feelings.  Many cancer centers and oncologist have someone on their staff for you to talk too and their are support groups.  Can you move your mother into your home and find doctors where you live?  It is very important to have doctors who are experienced in the field that your mother has cancer.  When my husband was first diagnosed we just went with our local ENT and oncologist, both were very good.  But when his cancer was found to still be there after his treatment the first time (radiation and chem), we were referred to a head and neck specialist who was great.  One of the best doctors I have ever been connected with.  Took his time on visits and talked to us with great compassion.  Never tried to hurry us out for his next appointment.  In fact when my husband declined further treatment, he told us if we ever needed anything to let him know.  Can't say the same for the second oncologist we had.

    Wishing you and your mother peace and comfort.

  • AshleylouG
    AshleylouG Member Posts: 2
    #3
    Ladylacy said:

    Your Mother

    So sorry to hear about your mother.  She is one brave fighting woman.  My husband was first diagnosed with laryngeal cancer and underwent radiation, chemo and then surgery to remove his voice box, reconstruction his throat and partial neck dissection at the age of 74.  He was only in the hospital for 6 days and healed great.  He did everything for himself, wouldn't let me help him.  We have 4 sons and many grown grandchildren but none of them helped whatsoever so I know how you are feeling.  But you need to take care of yourself too because you are important.

    A year later he was diagnosed with a second primary at the cervical of his esophagus, surgery was ruled out due to the previous radiation and surgery so he underwent more radiation and chemo.  He was declared NED for about 8 months when we found out that the cancer at the cervical of his esophagus had reoccurred and spread to one of his lungs.  He said enough was enough and declined any further treatment.  Only thing offerred was chemo and we were told upfront it would only prolong but could hasten his time.  Two years later he is still fighting but loosing his battle daily and it is hard to watch.  He still does everything for himself, just won't let me help him.  I do keep up with his medications and try to help him with his feedings but he still wants to do it for himself.  I can honestly say that I don't look forward to cleaning his stoma when he isn't able too.

    I would definitely get a second opinion before having your mother undergo more surgery.  Due to her previous radiation she could have problems healing.  As far as legal papers, definitely she needs to get them in order.  My husband can't talk, uses an El to speak with when he can, and has been on a feeding tube for the last two years because he can't swallow due to the tumor and all the radiation he has undergone and the damage it has done.  He has given me power of attorney over his healthcare (basically over everything) and he has a DNR order on file with hospice.  These things were hard to discuss and do, but a necessity.

    Caregiving is hard and there is no question about that.  It is a shame that your siblings won't help but in the end their hands will be out, that you can count on.  Been there, done that.  You need to discuss this with them and try to get their help because you have a life too.  You may need to talk to someone about your feelings.  Many cancer centers and oncologist have someone on their staff for you to talk too and their are support groups.  Can you move your mother into your home and find doctors where you live?  It is very important to have doctors who are experienced in the field that your mother has cancer.  When my husband was first diagnosed we just went with our local ENT and oncologist, both were very good.  But when his cancer was found to still be there after his treatment the first time (radiation and chem), we were referred to a head and neck specialist who was great.  One of the best doctors I have ever been connected with.  Took his time on visits and talked to us with great compassion.  Never tried to hurry us out for his next appointment.  In fact when my husband declined further treatment, he told us if we ever needed anything to let him know.  Can't say the same for the second oncologist we had.

    Wishing you and your mother peace and comfort.

    Thank you so much for your

    Thank you so much for your reply. I'm very sorry to hear about your husband, you both sound like you've been through hell and back. It makes me sad to hear that you didn't have any help, either, it's such a huge frustration to me! It's not something I will ever be able to understand. I'm trying to remember to take care of myself, especially now while things are still "calm". But right now I'm using it as more of a distraction, I suppose.

    I wasn't aware there could be complications with surgery after radiation. I didn't even think to ask about that, I was so shocked and didn't know what to say when her doctor told me. We only spoke very briefly, but I'll have to ask about that. She will also be meeting with another doctor as well so that will be basically our second opinion, and I'll be sure to ask him about it as well. Mom's initial surgery was done in a hospital only about 15 minutes from us, but it's a TERRIBLE place. The staff all but ignored her when she was in the ICU and refused to do suctions and she could hardly breathe and felt scared when I wasn't there. We will NEVER go there again- I don't mind driving the distance to her doctors as they're amazing people, it's just hard when there's so much to do here at home (and her home). I wish I could be in two places at once! But as for moving mom in with me, that's really my goal. I know she really would like to stay in her own home, and I would like that for her for as long as possible, but it's just going to be way too hard to keep that going for long.

    Mom's biggest concern- legally- was that none of my siblings wanted to be there to help, but if something happened to her they'd all want some kind of say in her care or  anything else, so that's a huge part of why she insisted on getting the legal everything in order. I've tried talking to each of them, but it's like talking to a wall! I would have better luck talking to a wall, actually...

    Thank you again for your reply, and I too wish that you and your husband can find some peace and comfort!

  • janelle216
    janelle216 Member Posts: 1
    #4
    Hi Ashley.  I am in a very

    Hi Ashley.  I am in a very similar place.  My mom got her diagonosis of cutaneous t-cell lymphoma on Christmas Eve 2013. She was (technically is) a librarian, worked full-time, lived alone as my dad had left years earlier.  It took her several years to even get this diagnosis because none of the doctors she had seen knew to even test her for a type of cancer.  Her symptoms all presented like some sort of skin disease.  She finally found a doctor at Duke University who specializes in this type of cancer.  I should also say that she lived an hour and a half from me.  At the time of her diagnosis, I had just met the man that I knew I would marry.  We got married before she started her radiation treatments, and she was sure that she would be able to take herself to treatment (she had 28 treatments over 6 weeks). I drove her to Duke to get her settled and just keep an eye on things, to see how she was doing with the treatment.  The situation devolved quickly, and I thank God every day that I have a wonderful husband and an amazing boss who told me that of course I needed to stay with her and then she and my co-workers donated leave to me so that I wouldn't go hungry. ;)

    Fast forward to last week, when Mom was admitted to the hospital for the second time in two months, complaining of symptoms she has complained of since before radiation began.  They finally ran the right tests and found that the t-cells mutated to a form of lymphoma none of the docs have seen before.  It has caused tumors in her mouth and throat, making eating and drinking near impossible feats.  It is also in her lymph nodes (all of them).  Because she had become so weak, they gave her a feeding tube and have sent her home for a couple of weeks to gain weight before they start chemo on 4/30.  She has made things as easy on me as she can...she has been living with us for the last few months which means that I can care for her and not worry about her wasting away in her own home because no one though to stop and check on her. 

    My husband is an amazing man, and this has put a serious test to our 1st year of marriage.  I should also tell you that in addition to working full time, I also have a farm. Horses, chickens, dogs, big gardens, lots of fence to maintain...and I have a brother who lives 2 miles from my mom, but was somehow never able to help out or stop by.  He was all in when her radiation started, but after her first weekend home, when he got to really see all of her cancer (because it's in her skin, the radiation was full body light beam therapy) as she had to keep 70% of her body bandaged at all times.  He bailed quickly after that and I have really struggled with my resentment toward him.  Like you, I wouldn't trade a minute of my time with my mom.  How many adults get to spend so much time with a parent?  After all, this is the woman that drove us to baseball/softball practice, band practice, school, soccer...you get the idea.

    But that doesn't make it any easier to accept the fact that we are, essentially, in this alone.  I try to remind myself often to be grateful that I get to honor my mom by care for her daily. 5 feedings a day. 2 times a day of putting steroid cream all over her body. Cleaning her tube site. Changing her bandages.  What more honoring thing to do for the woman who has always loved me unconditionally??

    I am so sorry to hear about all that you are going through, and I don't really have any wisdom to offer, but I am a kindred spirit. And sometimes knowing that you aren't alone makes a big difference.   I do hope that you got all of her legal papers straighted out.  My mom showed up at my home Christmas Eve to tell me about her diagnosis and then pulled out her living will, advanced medical directive, and power of attorney for me to keep on hand.  I am very grateful that she took the awkwardness out of the situation by having everything ready for me.

    I have some great days (as does Mom), and I have awful days where I am sad and angry and confused and just sit in the barn and cry.  I have days where I thank God for this opportunity and days where I question Him constantly.  But if you ever need to talk, please know that I am happy to listen and offer support.  This is a hard position for us to be in--we are the children having to act as the parent.  It is hard for us, and it is even harder for our moms.  I am so proud of you that you are taking such good care of her.  We have accepted a very tough job, and one that no one can really understand unless they have also cared for a parent.

    To answer your question of how do we manage our lives I say this: I have put everything on hold for her.  I used to work 40 hours a week, ride my horses daily, go for runs with my dogs...I am now too worried to leave her and haven't been on a horse in 6 months. I only work about 20 hours a week when she's not hospitalized.  I am not sure that I am dealing with this in a healthy way either.  I try to do yoga once or twice a week, just to quiet myself.  I do this in the basement so that I'm never far. I also go into the fields with my horses and just sit with them or brush them or talk to them until they get bored and leave me. ;) I would spend more time talking to people about it, but I don't want to be "that girl" that is always the downer in the room.  So I only tell people about it if they ask.  I guess you have to find a way to push out the negative energy that works for you.  I will leave you with this, though--there is no shame in crying.  I cry often, and NEVER in front of my mom, but it is cleansing and usually helps me clear my mind for more productive thought.

    I will be keeping you and your mom in my thoughts and prayers and send you lots of good energy!!

    ~Janelle

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