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I'm so lost. I drift between being numb or in incredible pain

Leyla_SZ's picture
Leyla_SZ
Posts: 5
Joined: Oct 2011

Warning: I know I jump from topic to topic, but I figured I would rather type this out organically vs. manipulate it.

My mother has been battling cancer for the past 3 years. It started with breast cancer, spread to bonen (hip & back), stomach & now possibly brain. Her health in the last few months have rapidly declined. She was a single mother raising my brother and I, working 60 hours a week and never once complained. Always was the life of the party, you couldn't slow her down. Now she can barely form a sentence. It’s not only the disease that is destroying her, but also the medications. She constantly feels tired, has no energy, has trouble remembering things, goes in and out of sleep throughout the entire day.

When she first became diagnosed she hid as much as she could from us. Even now, she does the same. Every time I question something or ask what this new medication she is taking or how I don’t understand something she tells me with the most heartbreaking look on her face, “I hope you never understand what I am going through”. She is wasting away right before my eyes. There are so many reasons why this breaks my heart. The first is that she should not be sick. I know, nobody “deserves” cancer but I truly feel like God made a huge mistake. She was left all alone with 2 children, and had to fight this disease all by herself. My mom was (is) the most strong, independent woman I know. And to imagine she had to go to doctors appointments, surgeries, and chemo/radiation all by herself - it literally makes me want to throw up. She kept everything secret because she didn’t want my brother & I to worry. Her reasoning was she will get better & why worry us in the meantime. That did not happen.

All of her family & friends either live out of the state or out of the country, so she basically was dealing with all these horrible emotions on her own. To imagine getting a mastectomy, losing all of your hair, all these things we girls value as the fun of being a woman she is now seeing gone right before her eyes. It makes me think back to 1st through 3rd grade, where I used to take my mom to school as my show & tell item. She was that insanely beautiful, and each time she had the other kids fighting over who got to sit next to her at lunch time. It’s as if she went from 26 years old to 126 years old, I can’t believe this is what she has been given.

I would give anything to take her illness, anything. I keep imagining myself making deals with God if he would in turn bring her to what she used to be or at least make her healthier, he can do this/that to me. It kills me seeing an older woman walking her dogs, shopping, or doing anything - because I know that is not what my mom will ever be OK to do. At this point she has lost a lot of weight, is glued to the couch, and pretty much goes in & out of sleep 24 hours a day 7 days a week for the past few months. It is breaking my heart because I can see her trying to do something, or trying to interact but she just can’t. Just a few days ago she said something that nearly killed me. She asked for something to eat and I jumped up to the kitchen, when I came back she barely was able to eat saying she had a stomach ache. She looked at me with the most emotion in weeks and said she was so sorry that she had to be taken care of like this, and how she wished she could “help out more around the house”. She looked so defeated. I wanted to bawl right there but I didn’t, I’ve learned not to do that in front of her. I told her “Mom you took care of my & my brother from the day we were born, why wouldn’t we do the same for you?”

There were a few episodes where she was rushed to the ER for pain and ended up staying overnight in observation. One of those nights I stayed at the hospital with her, I woke up twice in the middle of the night to my frail mom who had crept out of the hospital bed with IV’s & cords still connected to her adjusting my blanket. She was hooked up to multiple IV’s, barely able to walk yet the second she saw my blanket falling off me or me moving around she jumped into action trying to make me comfortable. Every time I think of that I immediately breakdown.

I work a full time job, live by myself and my mom lives about 20 min from me. I would stop in every few days and take care of errands for her or hang out and that used to be enough. At this point my brother has now moved in with her to be with her full time. At no point have I ever felt like she is a burden, or feel like I’m “stuck” or anything negative. The only things I get frustrated about are what else can I do for her? What would make her happy or more comfortable? She keeps saying nothing but I know she is just trying to be polite. My brother got her a little vegetable garden started which is a great idea, it gets her up because she has to water & check on them.

I’m learning that the best thing I can offer my mom is my time. I can offer taking her shopping or doing a spa day, she always declines (and adds in, “why waste your money?“). Though it’s hard because most of the time she is going in and out of sleep (like 90% of the time) so it’s not like we are having conversations, taking a walk together, or watching a movie. I read somewhere that just being there for a person with cancer (or any illness), regardless of if you are really even interacting with them they can feel you and your love in the room. That thought makes me feel better.

Besides getting this off my chest, I do have some questions. What do you suggest about taking care of someone with cancer when she are always “out of it”? She refuses to be put on a good sleep schedule (instead just dozes all day) or take any sleeping aids. Not having good sleep hygiene is unhealthy; whether you have cancer or not. I just know if she had a set sleep schedule it would at least help a little, but it’s hard to have a conversation with someone going in and out of sleep 24/7.

Another issue I wish I could get some advice on is how do I encourage her to get up and be more active? Not necessarily go run a mile, but just little things like let’s stay up and watch a movie or do something out of the house that she feels up to doing. At this point, she can’t do anything by herself outside of the house. i.e. no way she could go to the store, the mailbox, etc on her own so I know it’s difficult regardless of if she wants to or not. The thing is I know it’s unhealthy to be stuck in a house all day every day for weeks & now months. It has to have some sort of physiological impact which I am trying to avoid for her. Any advice and/or encouragement would be appreciated - thank you.

jimwins's picture
jimwins
Posts: 2109
Joined: Aug 2011

Welcome to this site. You'll find caring and supportive folks
here. I'm sorry your mother, you and your brother are having to
go through this.

I'm sure others will chime in with some good ears and advice for you.

Maybe you can discuss this with her doctor and review the medications
she's taking. It may be that they can be changed/altered so she
will rest better and not be "in and out" so much. Maybe she's getting
too much of a certain drug or perhaps they can prescribe something different
to help. Of course I mean all of this without worsening her symptoms and
discomfort. Depression may be playing in there as well.

If the above can be done, hopefully she will improve some. Then you can
maybe start with little things and work her up to the bigger things.
For example, maybe she can help you with doing some meal preparation (simple
things) and work her up to more involved and longer things like an outing
or sitting through an entire movie.

Just some ideas. I wish you, your brother and your mom the best.

Hang in there and big hugs,

Jim

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

My Mom is almost three years into her battle, so I know how sad it is to watch the end coming to our valiant fighters. Your mom getting up to fix your blanket is so cute. The lesson there is that your mother will not change just because she is dying. In every waking moment, she will still want to do for everyone.

It's good that your brother could move in. Do you have hospice help, too? Bone mets call for good pain medicine, usually morphine, well managed.

My mother and I have honest talks about her "process" -- how she talks of dying. Many times I've told her just what you've told your mom (you took care of us and now it's our turn to take care of you), and gradually she has accepted it.

On a practical note, my mother's attention span is growing very short, and she often says she feels confused. She likes staying indoors more and more. Oddly enough, she likes looking at magazines, which she never did before. Maybe they're well suited to a short attention span.

ldguerra's picture
ldguerra
Posts: 41
Joined: Jul 2011

Leyla,

Caregiver job is the hardest of them all, bcause we feel so helpless and the fact that there is little we can physically do it becomes worst, our impotent feeling. The best u can do is be there for her, it is clear her depression is playing a big role, in they way she is feeling. Like someone mentioned (sorry i forgot ur name) that u do need to discuss her meds with her doctor, it could be she need a different type bcause of her depression or maybe they didn't give her anything for depression.

You are doing a good job, keep it up, don't let anything get you down that doesn't help, I have to check myself sometimes also that is normal. Now my husband needs help undressing and i try to make it fun for him so he won't feel like he has lost too much of himself.

So honey, be there that is what we can do for them, we can only do so much so don't push yourself too much, u need your health to be there for ur mom. Love her like never before, hug her and let her know if she needs something you are there. My husband went from 56 to 96 so i know it is so depressing to have to be witness to this.

Hugs for you and will have u in my prayers

I_Promise's picture
I_Promise
Posts: 213
Joined: Aug 2011

When you said your mom adjusted your blanket while being hooked on the IVs, I started crying. She is tully an extraordinaire person. I am sorry you have to go through this. She does not deserve cancer.

Julia

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

Leyla,

If you haven't called Hospice, you might want to go ahead and bring them on board. They are wonderful people and can help you, your brother and your mother in so many ways. Many people only know of Hospice for the "end days". But they are available for many other services. Respite care, pain management (which they will pay for all meds and evaluate as often as necessary), services for you and your brother to help you cope with this process, and many others. My husband is on Hospice care because we were having difficulty getting the pain management team to accurately keep him dosed with his pain meds. Early on, it was too much and made him sleepy all the time (started on Oxycontin, then to Morphine which made him sleep a lot), and he wasn't ready to sleep as much as he was. So when Hospice came on board they switched him back to Oxycontin with Oxycodone for break-through pain. The Oxycontin doesn't make him sleepy and he is able to stay active. Just a thought.

Also, if I may quote from a book they gave us on the journey. The process of "withdrawal" is powerful.

"As the knowledge that 'yes, I am dying' becomes real, a person begins to withdraw from the world around them. This is the beginning of separation, first from the world- no more interest in newspapers or television then from people- no more neighbors visiting: 'Tell Aunt Jessie I don't feel like company today,' and finally from the children, grandchildren and perhaps even those persons most loved. This is becoming a time of withdrawing from everything outside of one's self and going inside. Inside where there is sorting out, evaluation one's self and one's life. But inside there is only room for one. This processing of one's life is usually done with the eyes closed, so sleep increases. A morning nap is added to the usual afternoon nap. Staying in bed all day and spending more time asleep than awake becomes the morm. This appears to be just sleep but know that important work is going on inside on a level of which 'outsiders' aren't aware. With this withdrawal comes less of a need to communicate with others. Words are seen as being connected with the physical life that is being left behind. Words lose their importance; touch and wordlessness take on more meaning."

These are words from a great book that Hospice gave me as an educational tool and has been a very good read for me. Hopefully it may be able to lend you a hand in understanding and feeling comfort in knowing that much work is being done, so that your mother's transition may meet her with peace and understanding.

Much care and prayer for you and your family!
Michelle

Leyla_SZ's picture
Leyla_SZ
Posts: 5
Joined: Oct 2011

Thanks for everyone's replies, this website has been an incredible help. I spend hours a day just reading posts. I had a meeting with her doctor yesterday, it's a lot worse than what she was letting my brother & I know. At this point she isn't expected to see the new year, and we have setup hospice care for her. Treatment has not been working, and the cancer has spread. It's also not helping that it's October, and everything is either pink or "breast cancer awareness" - it's literally like having groundhog's day every hour on the hour. I'm trying to prepare myself for what is to come but it's just so hard.. my mom is my soulmate.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

My mom has battled ovarian cancer (teal or purple ribbon), and she actually feels angry about all the pink everywhere. Weird. Also, the longer my mother has been off chemo, the better she has felt. Make sure all of your Mom's meds are tweaked toward comfort care. It can make a huge difference in the quality of her days.

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

and your Mom. I can only imagine what you, your brother and your Mom are going through and wish that I had some majic words that would help you, but I don't. All I can suggest is that you make as many precious memories as you can in the time you have left. That you hold dear every moment that you can and know that your Mom loves you and wishes she could spare you this pain. I say that because I'm a Mom and my kid's Dad is going through this awful ordeal and he wishes more than anything he could spare them any ounce of pain. He wants them to go on with their lives and be grateful for the time they did have together.

More than anything, your Mom wants you to be happy!

((((((hugs))))) and say it out loud. That's what gets me through the day most days!!!

D

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