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I live with my mom who has stage 4 cancer 
Started by Tereska
26 Nov 2016, 6:26 AM

How do I stay a good care giver to my mom and not let the ravages of this horrible disease affect me?
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Reply by KathCull_admin
26 Nov 2016, 10:26 PM

Dear Tereska
Glad you found us and posted. I think it is hard when you are a caregiver to not be affected. You are providing care, cooking, arranging appointments, always alert for any changes or needs that she might have, cleaning, and on top of that this is your mom - you are her daughter.

Do you have family who are able to support you and your mom? Do you have a support system Tereska - people you can talk to and do things with? 

I wondered if you had seen this article Caring for Yourself  - it might give you some ideas.

Look forward to hearing from you.
Katherine 
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Reply by Tereska
27 Nov 2016, 6:48 AM

Hi Katherine:
My dad and brother live in Slovakia and my mom isn't telling them about doing chemo because she's afraid they would hop on the next plane and come here. It's not that we don't want them it's just they can be quite overbearing and my mom doesn't need the stress of worrying about them and what they think.
I do have many friends who love and support the both of us but of course they can't know what I am going through because my mom is my best friend. It's been the two of us literally for the past 10 years and I can't imagine a time that she won't be here it terrifies me to the core of my being.
I think I always just took for granted that my mom would always be here and we would grow old together. She just turned 70 and I'm 45 and except for these past few months my mom has been healthy and so full of life.
It is unbearable to see her so weak and tired and there is absolutely nothing I can do to stop the progression of this horrible disease.
Thank you for responding to me I will look at the article you suggested and hope we will get to talk soon.
Sincerely,
Tereska
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Reply by Carlyn
27 Nov 2016, 4:27 PM

Hi Tereska,

It's good you found us here. I looked after my Mom when she had cancer at end of her life; we were at same ages as you and your Mom. I'm 52 now; Mom has been gone 9 years. The article Katherine kindly provided is really important to read.  

I'm very sorry for what you and your Mom are going through. You're so right, it's much more than the disease, it's the relationship, the siblings, all the emotional aspects which are just as difficult to manage and process.

Your friends sound like good people :-) Is it possible or even comfortable for you to invite them over for tea and coffee so you can lean a bit on them and talk about how you're feeling? 

There is something called "Anticipatory Grief" ... sounds like you may be experiencing this. Your friends too in their way due to their relationships with your Mom and with you. A get together, weekly perhaps if that's possible, might be of help for all of you. Include your Mom if she's up to it as well. This is just an idea, sit wth it, talk to your friends about it a bit, see how you feel.

There is one other thing I want to mention... because of our closeness during that time, my Mom didn't want others involved - friends, strangers (certain healthcare or support staff). But I was near collapse and had to say "I need this help for us, so I can take care of you without dropping". At the cancer clinic there was a therapist for patients, so that's where I said it, in company with the therapist so Mom felt safe and knew she could speak freely too. We were both supported and it was much easier to accept for her. And I felt a lot less stressed. It was a peaceful calm conversation and i'm glad we did that.  

I'm keeping you and your Mom in my thoughts. 

Carlyn
 
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Reply by GirlWithTheBlackBeret
27 Nov 2016, 7:01 PM

Hi Tereska,


I’m sorry to hear about your mom’s diagnosis.


Just over 10 years ago, I was pretty much in your shoes feeling the same things you mentioned. My mom had been diagnosed with stage 4 breast cancer that had spread to other parts of her body. I was 30 and she was 62.


I don’t think it’s possible to not be affected when your loved one is so ill and see a disease diminish them over time. Here’s a few things I learned or that helped me cope:


I too thought I’d grow old with my mom. When I realised that was not going to happen, I reframed my vision and decided to make the best out of the time we had left. I took leave from work (using the Compassionate Care benefits offered through government Employment Insurance) to care for her. I figured since she was such a good mom to me and my siblings I would focus my energies into being a great caregiver for her. My mom was very worries about who would care for her. When I told her I would be her main caregiver she was so very relieved.


Well the situation was so awful and I felt like I was dying too. I then realised what I was feeling was probably only 1% of what my mom was feeling. She didn’t want people crying on her because she had her own tidal wave of emotions she was dealing with herself. I became the gate keeper when it came to people wanting to visit her. If friends and family wanted to be overbearing, cry on her our make the situation about how they were feeling, she didn’t want to see them. At her request, it was my job to set boundaries and/or limit their interaction with her.


This being said, if your dad and brother do not know about your mom’s diagnosis and how serious it is, you may want to think about letting them know. The health of someone with stage 4 cancer is precarious, things can change quickly. You could set some boundaries with them and keep reminding them “this is about mom and how mom is feeling, not about us and how we are feeling”


In terms of self-care, I also went to see my doctor to tell her what was going on and how much anxiety and stress I was feeling. She prescribed an anti-depressant and anti-anxiety meds.  I’m not a person who likes taking pills or thinks meds are the solution to every one of life’s problem but they did help me cope with the situation better.


We tried to take things one day at a time and not think about the future. We celebrated when she had a good day and bore through the bad ones.


When dealing with a loved one who is so ill and/or is dying it thing it is very important to understand the wishes of your loved one. When someone is so sick they feel like everything is out of control, having their wishes followed is one way to give them back some control. If you go about following these wishes you may also have few regrets later.


Tereska, the journey you are on will not be easy, in fact most of it will be horrible. Channel the love you have for your mom into strength to be there for her when she is going to need you the most. 


Thinking of you and hoping you find some comfort in these words,


GWTBB

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Reply by NatR
27 Nov 2016, 11:19 PM

Dear Tereska,

i see you have been getting a warm welcome to the forum.
i hope you will take care of yourself as so often the person /patient who is the centre of the care wheel is not the only one needing support 

caregivers are so valued and because they are often immediate family  - they are ignored when it comes to the question - "And how are you doing? "

Dont feel guilty to ask for some support and time off - because you want to do it all and of course you love your mother - this job will be one of the most demanding you will ever do

we all understand and listen, vent, offer tips and ways to cope.
we all hear understand and do not judge
feel safe to say what hurts, what frustrates and what we can do to help.  each one has a unique experience and point of view and we all want to encourage each other

keep writing because it helps you process your journey as well - writing can be healing too
sending you my thoughts tonight
sincerely
NatR 
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Reply by Tereska
27 Nov 2016, 11:40 PM

Thank you for your kind words. Yes I am feeling very overwhelmed and quite alone even though we both have many supportive friends but at the end of the day I am still doing this journey alone with my mom.
I do feel angry at what this wretched disease is doing to her. She doesn't deserve this! Nobody does!
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Reply by NatR
28 Nov 2016, 1:46 AM

You have that right Tereska,
no one deserves illness of any kind.  It's hard on all those who have lost loved ones.  I have lost family members too young, a brother at 39, a cousin my age (65 yrs at the time) two years ago.  I know everyone who visits this forum wishes they could have a better outcome....there is nothing easy about this journey.  

i wish I knew how to make it hurt less, but I don't know how.  I wish no one had to go through the anguish of terrible illness attacking our parents, siblings, friends, but I know that sharing our tough times makes us all stronger...because we each understand how devastating it is.

all I can say is that there are real people behind each profile although anonymous - we all care...
sending you a cyber hug
NatR 
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Reply by Tian
29 Nov 2016, 2:19 AM

Dear Tereska

It is the nature of life that at some point(s) we are presented with situations where we want to scream that life is not fair. We can choose to run away and hide or we can try to mitigate the circumstances. Your mother is very fortunate to have you to try to ease her pain and suffering. This is probably the most difficult thing you have ever had to do but although no one else can know exactly what you are experiencing that does not mean you have to face this alone. True friends, by definition, are people who provide support in situations like this so be open to letting your friends help out in whatever way they can. Also, in critical situations people may react in ways that surprise positively so it's possible your father and brother may be great pillars of support but your mother's wishes need to be respected. Perhaps as the situation develops your mother will want them to come to help out or say things that should be said.

Aside from your mother no one is impacted by her disease more than you but please don't feel that you are facing this alone. You already have people in your life who can help and by posting here you have touched more people who are concerned for you and your mother. Feel free to let us know how things unfold.

One day at a time.

Tian

 
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Reply by Tereska
29 Nov 2016, 3:15 AM

Hi Tian: Thank you for your kind words and you are right in everything you are saying. I have to allow my friends and my moms friends to help out more. We don't have to do this journey alone and it's already been proven time and time again.
I will keep you posted and let you know how she's doing.
Sincerely,
Tereska
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