New to the world of being my mom's caregiver.

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From Water
From Water Member Posts: 1
edited March 2014 in Caregivers #1
I'm in need to support. My mother was diagnosed with a stage 4B cancer two months ago. She's since moved in with us (husband, the kids, and I), and experienced her first chemo treatment.

I'm having a hard time. There are just so many emotions and thoughts and moods that I'm having. I'm sure that my mom is having them as well. Aside from the stress, heartache, anger, and every other emotions that comes with this situation, I'm also finding myself 'fed up' at times. I'm trying hard to remain patient, and I ignore my mom's frequent negative attitudes. Basically the chemo is making those attitudes worse and it's hard to deal with. How do I deal with being a caretaker to my mother when she is increasingly grumpy (to put it mildly)? I ignore the grumpiness and don't blame her. However, it's still hard to deal with it all (everything....every, every..thing).

My mom's hair began to fall out one week ago, and now it's almost all gone. It's breaking my heard to see her go through this. There is hair all over the house. I try to clean it up quickly and discretely (I don't want her to feel bad about it, or see how shocking it looks around the house). I've ordered some lovely scarves and head coverings for her, and am waiting for them to arrive. I hope that she feels- at least- a bit better when she sees how beautiful they are, and how lovely she will look wearing them.

I want to know how to deal with all of this. Some days, I'm at my end. I have three school age children, and my mother is now here because of the cancer and chemo. I rarely have alone time with my husband.

I'm burnt out.

I'm fed up.

I'm scared.

WHAT the heck are we going to do, and HOW are we going to handle it? HOW AM I GOING TO KEEP IT ALL TOGETHER FOR MY MOTHER AND FAMILY? How am I not going to have a nervous and physical break down?
(BTW: I have a nuerological issue that I deal with. The medication makes me tired. I'm always tired. Always).

Chemo must do odd things to a person. On the one hand, I see that it has increased the negative attributes of my mother's personality. I supposed that it's also from feelng so tired and down all day long- being exhausted and ill wears on anyone. Surely that seriously gets to anyone.

She's very aggitated, moody, grumpy..., and now talks to herself most of the time. In the middle of speaking to her, she will being to just talk to herself (in a mummble). She's always been a person who talks to herself, but not like this. It's getting to be a bit disturbing, as I wonder if she's mentally ok right now.

I'm also angry. I'm angry because the doctors say that her five year survival rate is 15%, and it DIDN'T HAVE TO BE THIS WAY! (Below I mention how it could have been prevented. Instead it turned into the biggest, worst things of our lives.)

That low statistic, of a 15% survival rate, is terrifying (although I'm not dweling on it, it sometimes 'hits' me). I've never told those numbers to her, and I don't plan to. The doctor won't tell her either, unless she comes out and asks him.

One the one hand, the low number helps to prepare me for the worse. On the other hand, I say 'ok, so she has a chance!'.

What is making me angry is that my mother could have prevented this. She is so health conscious and healthy (oh, besides the cancer); always into exercise, organic foods, vitaments. She's been healthy for YEARS. She's one of the only 60 year olds that I know who didn't (seem) to have a single health issue beyong seasonal allergies. She wasn't taking any medications. Didn't smoke. Rarely, rarely had a glass of wine. HOWEVER, she did NOT go to a doctor for regular check ups. She stopped going to an OB-GYN for pap exams several years ago (that's from what I heard her tell the docs. It might have been much longer).

If she was going for yearly exams, the docs say that they would have caught this early, and she'd have had a nearly 100% success of beating this. So since she didn't go to the doctors for exams, the cancer just grew and grew. They say it probably began two years ago. It grew until it caused a medical emergency and had to go by ambulance to the hospital after she almost hemorrhaged to death while at home, unable to stand up and get to the phone for 12 hours.

She then spent about 15 days in the hospital and underwent radical and evasive surgery, including multiple lymph node removal. I spent every day at the hospital with her- hours on end. Sometimes staying until the middle of the night before going home to sleep a few hours.

Now, I'm sad and angry. Angry because I might loose my mother. Angry because she might loose HER life. My kids might loose their grandmother. and yes, angry because I'm the caregiver to this while it could have been prevented if she'd only had regular pap exams. IT COULD HAVE BEEN PREVENTED!
And when she's so freaking crabby, and snapping at me, it's really ticks me off. It also hurts. I'm the one giving her such constant care!

The number one reason that I do all of this is for the sake of God. If I only did things for the sake of pleasing people, I'd surely have given up on many people a long time ago. Pleasing God must be my top motivator. When I remember that, it does make it easier to care for a negative grumpy person.

I'm also having trouble with her constantly wanting to run small errands. She's too tired to drive, so I take her. But it's increasingly hard, because I also have a life and family to run. I'm exhausted with these errands that are often for nonsense. Is she living in a bubble? Does she still think that she's living alone, or that everyone has the time for the things that SHE DID(does)? Oh God, I'm exhausted. Some days both physically and mentally.
How do I keep this up, or tell her that I can't keep up the type of schedule that she wants? She's also too tired for her own ideas, and it's makes the trips that much more exhausting for her, making her more miserable to be around and drive with. Our life and circumstances, now, are bad enough- must I now spend time in a small car in misery?

And yes, I feel guilt for complaining about this all. I'm just looking that the bigger, more practical, doable picture (and the picture that will keep me relatively SANE, the one trying to care for everyone.

I was recently accepted into grad school. I'm going to go ahead with the plan to enter the program this fall, but I'm pretty worried about it. How the heck will I take care of myself, the kids, husband, home...and mother? The first things on the list would have made it hard enough. But the cancer and chemo.

I might have said this, but I must say it again: I don't mind caring for my own mother. It is my duty and honor. But it's stil hard. I don't know how to do it. And when it's extra hard, I'm reminded of how this didn't have to be. oh and by the way, she is not aware that SHE could have prevented this. No one wants to say 'if you only did such and such'. (that would be a pretty crappy thing to say). She doesn't need to know or feel that this was largely preventable on her part. Telling her some of the details would be counterproductive (And she's let on that she's not interested- at least not yet- in the deeper details).

Sigh. I know that I'm rambling. I know this might not be all too coherant. It's late, I'm exhausted, and I'm burnt out. I don't know how I can do this. I need support people who know what I'm going through. It's so easy for people who have not been through this to give their advice or think that they know what will 'fix' this all. But it's too complex for easy fixes.

How do I deal with feeling FED UP on the days when my mother is a real...um....bear? How do I deal on days when there are many requests for this or that, and my kids are also fighting and nagging and being horrid? How do I deal when I have to keep pushing on even when I'm just too tired or sick to take care of everybody? How am I going to get through this? How will we ALL get through it? What can I do for my mother's hostile impatient moods? How do I remember not to take the moods personally? How do I become a robot?

Thanks for reading, or for just being here.
I realize it's a long note and blame no one for bailing after the first paragraph. I know that. I just went on and on because I needed to vent. And believe me, that vent is not like the ticked off, utterly frustrated vent like I had earlier today while texting my husband.

This is the first type of 'group support' that I've reached out to since this nightmare began on April 6, 2010.

THANK YOU! Take care all.

Sincerely,

-From Water

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    You Are Not Alone Here
    Hi FromWater
    Welcome to the caregiver family. Here is the place you can always come to, any day, any time, to cry, laugh, rejoice, and do most definitely VENT!!!!! Now...don't you feel much better now that you wrote that all down, and got it "all" off of your chest and mind? Good. That is the first step! I was a caregiver for my dad. Hep passed away in March 2010 from esophageal cancer. It is a very long, hard, bumpy roller coaster ride. Cancer sucks for everyone involved. You have a lot on your plate. Your mom, husband and kids. Everyone involved has to be on the same page. Everyone has to step up to the plate and help some way some how. Mom has to digest this sudden news of Cancer. Once she has done that, she has to accept it, and fight it. She and everyone has to have a positive outlook. Having a positive mind is half the battle. Take this journey one hour at a time. You never know what is going to happen next. Yes, she could have possibly prevented this, but she did not. That was then, and this is now. You have to deal with the present, not dwell in the past. You can not keep beating her up for that. Find out all you can about the type of cancer she has. Find out about all of the treatment options. If you are not happy with her drs, get a second opinion. And most of all....ask for help whenever you need it!!! Come here often.
    Keep in touch. We will be praying for you your mom and your family.
    Tina
  • Barbara53
    Barbara53 Member Posts: 652
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    giving up your life
    There's no doubt about it -- giving up your life to take care of your mother is so bad and so good at the same time, and there are days when you need to stomp away from it all. I've been helping Mom through surgery, chemo, complications and more complications for 16 months.

    You will get through this, but you gotta set aside your anger over coulda-shoulda-been prevented. You are not God. Give it up, because anger is not love, and loving is hard enough under these circumstances.

    Sorry to be blunt, but I really think it will help. You are feeling like a basket case for very good reasons. It is so hard to do the right thing, day after day.
  • panks
    panks Member Posts: 36 Member
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    Grumpy
    Chances are the chemo is not making your mother as grumpy as having cancer is.Just like you this is a whole new world for her and not one she would have chosen. She is dealing with enough anger and pain right now, without having to deal with yours. One thing that is helpful is to step back and ask yourself what if it was me laying there. Their life is no longer their own and as the caregiver yours isnt either. God bless you all on this journey, and believe it or not you and your mother will become so close that you will laugh together at things no outsider could ever begin to understand. Keep posting it really does help.

    Panks
  • tmc576
    tmc576 Member Posts: 60 Member
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    I know how hard it can be
    We are pretty much in the same boat, so I totally understand how you feel. I also have three kids(12,6,and 3) and my mom who has stage IV OVCA (which has about the same 5 yr numbers that you mentioned),moved in with us also. Feel free to vent anytime. If you have read any current posts, you will see I vent A LOT. I know how it is to love your mom and want to take care of her, but feel like you are being pulled in a hundred different directions. You will be in my thoughts and prayers.
  • augigi
    augigi Member Posts: 89
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    tmc576 said:

    I know how hard it can be
    We are pretty much in the same boat, so I totally understand how you feel. I also have three kids(12,6,and 3) and my mom who has stage IV OVCA (which has about the same 5 yr numbers that you mentioned),moved in with us also. Feel free to vent anytime. If you have read any current posts, you will see I vent A LOT. I know how it is to love your mom and want to take care of her, but feel like you are being pulled in a hundred different directions. You will be in my thoughts and prayers.

    Please stop thinking that
    Please stop thinking that "IT COULD HAVE BEEN PREVENTED". Neither you, nor the doctors know that. Sometimes people have annual checkups and tumours grow in between checkups. Even if it had been discovered earlier, that increases your chances of survival, but it doesn't guarantee it. You seem to have accepted that this is going to get your mother. .. it may not. 15% is a lot better than 0% survival, which you seem to be basing your feelings on.

    All you can do it get up each day, and ask god or whatever you believe in to help you be patient and kind today. It's HARD, I know, I do it too and god knows I snap at my mother at times. But I know that when she's gone, I will be glad I had the chance to look after her, and I'll wish I had longer, so I'm trying to take a breath and hold it when I get angry.

    Have you and your mom cried about this diagnosis together? Talked about what you're scared of? It made me a lot closer to my mom to be able to just have a cry together sometimes.

    Just do your best, and take time to look after yourself. If you have friends, family, neighbours who offer to help - take them up on it, even if it's just to take your mom shopping to give you a few hours free. Look up if there's any community services that take people out shopping etc to give you a rest. Check if there's a respite care place in case you all get fed up with each other that she could stay at for a couple of nights.

    Your mom didn't plan on this, and she's angry and scared. We take that out on our families because we know they will be there to take it.
  • onhold
    onhold Member Posts: 23
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    Thoughts
    This is where you can speak your mind without having to feel guilty about it. There are a lot of thoughts to process with a cancer diagnosis.
    Let go (as hard as it is) to the anger. Nothing will come of it, and it may not be true. My dad got regular screenings, but when they found his cancer it had taken over. I kept hearing the phrase "it normally doesn't grow this fast". When my husband's cancer came back for the 3rd & 4th time I again heard "it normally doesn't grow this fast". You never know, regular screenings don't help if it is fast growing (and "normal" doesn't really have a place with cancer).
    Take care of yourself first. If it will help to be frank with your mom then lay down some rules. Determine what errands are a "need" vs "want". Tell your mom in no uncertain terms that she is part of a bigger family now and her "wants" will get ranked with everyone elses and given the attention they deserve on the scale of things. Find help. Do you have siblings or other relatives who can spell you? Family friends, church group, senior citizen group, meals on wheels? Even arranging someone else to drive her around a few hours each week. Definitely pass on some regular household chores to your husband, and enlist your kids to help. Even young kids can do things like put all their toys away, pour their own cereal or toast a pre-sliced bagel, sweep the floor, etc. Older kids should be able to do everything you would do including shopping, meal planning, cooking & cleaning.
    Good luck in finding a balance in your life.
  • onhold
    onhold Member Posts: 23
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    Thoughts
    This is where you can speak your mind without having to feel guilty about it. There are a lot of thoughts to process with a cancer diagnosis.
    Let go (as hard as it is) to the anger. Nothing will come of it, and it may not be true. My dad got regular screenings, but when they found his cancer it had taken over. I kept hearing the phrase "it normally doesn't grow this fast". When my husband's cancer came back for the 3rd & 4th time I again heard "it normally doesn't grow this fast". You never know, regular screenings don't help if it is fast growing (and "normal" doesn't really have a place with cancer).
    Take care of yourself first. If it will help to be frank with your mom then lay down some rules. Determine what errands are a "need" vs "want". Tell your mom in no uncertain terms that she is part of a bigger family now and her "wants" will get ranked with everyone elses and given the attention they deserve on the scale of things. Find help. Do you have siblings or other relatives who can spell you? Family friends, church group, senior citizen group, meals on wheels? Even arranging someone else to drive her around a few hours each week. Definitely pass on some regular household chores to your husband, and enlist your kids to help. Even young kids can do things like put all their toys away, pour their own cereal or toast a pre-sliced bagel, sweep the floor, etc. Older kids should be able to do everything you would do including shopping, meal planning, cooking & cleaning.
    Good luck in finding a balance in your life.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
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    Grieving
    You are grieving the life you once had and anger is a part of that. You are entitled to that and all your other emotions. Your mom is also grieving the life she had. Everything has changed for all of you. Try to move beyond the anger. The woulda , coulda, shouldas, need to be allowed to leave, and you need to move on. You have taken on a big job as your mom's caregiver along with raising a family. You need to take care of you first so you can do that job. I think the idea of setting rules and boundaries is very good. Have a talk with your mom or even a family meeting. Life has changed for all of you, so the rules need to change, too. Everyone, including your mom, needs to accept responsibilities for living together. This is a good place to vent. Also, don't pay a lot of attention to the stats. Each person is different and responds differently to treatment. Also, most stats are outdated. Remember, someone has to be in that survival percentage. The stats said my husband had about 22 months. He made it for 6 years. Only God knows when our time is up. Take care, Fay