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Overwhelmed and scared 
Started by sunflower1973
20 Apr 2013, 6:22 PM

Hi,

I am facing the hardest thing I have ever had to face in my life, both my parents have cancer and i'm an only child.  My dad has prostrate cancer that has metasized to his bones and my mom just yesterday found out she has breast cancer.  My dad last week had a cold and his stomach and heart started to swell and was having problems breathing and was given antibiotics and more enhalers after a very scary week he is feeling much better but the news of my mom has thrown him for a loop.  I am trying my hardest to be strong but it is hard not to cry when you see your dad gasping for air and there is nothing you can do or not to cry when you find your other parent is starting there journey and are going to have to get a part of thier breast removed. I feel weak for crying because I know I need to be strong and function to take care of everyone but also I feel I have a right to express my emotions.  My husband is being great and my son who is 3 makes me happy I try to be strong for him also.

thanks for listening,
Lori 
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Reply by NatR
20 Apr 2013, 10:15 PM

Dear Lori,

i am so sorry to hear your news and so glad you have written the forum

it is overwhelming to have one parent seriously ill never mind both - and so difficult to know that you are their hope and support.

I am just one of the many who will listen and try to support you as you go through this very hard time - it does help to share the burdens

Hoping that you feel less alone - by sharing - and I also hope you can access some support for care - and support for the three of you.

you are in my thoughts tonight
do write as you can, and know that this website offers much to families in need, professional advise as well as listening ears from many who care 

 Sincerely 
NatR 
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Reply by marstin
21 Apr 2013, 12:11 AM

Hi Lori,

You have found a place that will hopefully help you along this journey and you will find that there are people here that are walking a similar tightrope or who have understanding of how difficult it is to deal with so much at once.

Please don't be hard on yourself for crying.  It is a form of releasing some of the tension and fear that you are feeling so allow yourself to give in to it. You will find the strength as the days go by to deal with each thing that comes your way. Just take it one day at a time and try to not to guess what lies ahead. Doing that can sometimes create more fear in your mind.

We will help you carry this burden and some of us will share our journeys and hopefully we can make this just that little bit easier to deal with.

Hugs,
Tracie
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Reply by Tian
21 Apr 2013, 1:28 AM

Dear Lori

I admire you that when you have been placed under a tremendous amount of pressure you realize that you need to be strong in order to provide the best care that you can. And that is precisely why you should not deny yourself from crying. It is a natural response to a horrible situation and definitely not a sign of weakness. You may be in store for a long grind so you need to take care of yourself to be of most help to your parents and bottling up emotions does not help. Your husband's support is invaluable and to be treaured. Please keep us informed as your ordeal unfolds. You are not alone.

Tian 
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Reply by moderator | modératrice
23 Apr 2013, 1:47 PM

Hi Lori,

Welcome to Virtual Hospice. I'm heartened by the warmth and support other members are offering you. Thank you NatR, Tracie and Tian!

Lori, I echo Tian's last line "you are not alone." I'd like to introduce you to Paula (Lilbear). Like you, she has very young children and she cares for 2 parents with late-stage cancer. You can read more about her and connect with her on this thread:

I am getting so burnt out....help!? 

Do you live close to your parents?
Colleen 
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Reply by JennJilks
24 Apr 2013, 1:02 PM

There is no need for fear. You will cope. Your parents have taught you all of the skills you need to be their caregivers. You are a parent, you have this experience.
You will do what you can.
You will make the decisions you need to make, with the best information you have at the time, if you parents need a decision-maker.
Respect their wishes, talk to them about their worries and fears. Assure them that you will help them as much as you can.
There is no need for fear as most of us get throught this one way or another.
You need not horribilise the situation. You can manage and you will be able to advocate for them. I know. My late mom was having chemo for cancer, while dad had a brain tumour and radiation.
When you need a break you take it.
There are questions to ask your parent's oncologists. My mother refused to allow me to help and the chemo killed her after the first treatment 6 weeks after I moved, left behind family and friends, and changed jobs to help them out.
ASK THE QUESTIONS as I believe quality of life is more important than quantity of life, but you and your parents will have to make decisions based on information and not fear.
 There is no reason to die in pain in Canada. Each Ontario LHIN has a Pain Assessment and Symptom Management specialist who will help a GP care for palliative patients.
My late father had terrible pain. Many of my hospice clients refuse pain meds in some sort of brave, stiff upper lip mindset. Each palliative patient dying at home should demand a Pain Management Kit and a complete Pain Management Assessment. The kit is simply pain meds for home use in the case of an early hours emergency. It could be morphine pills, or a morphine patch. Be familiar with the Signs of Pain, as many patients are unable to articulate that they are in pain.
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Reply by moderator | modératrice
24 Apr 2013, 2:24 PM

Jenn,
While fear can paralyze us, I also think it is extremely important to recognize our fears and to express them. I'm relieved that Lori found a place here on the forums where she can talk about the scary parts of her situation - now and her apprehensions about what the future may hold. 

Lori,
I hope you will continue to share your fears as they surface. Often even the act of writing down what concerns us here on the forum helps lead us to solutions. Most people are unexperienced in the journey at the end of life and there are many questions and new situations. You need not bear them alone. We're listening.

Jenn also mentioned the Ontario LHINs. These are Local Health Integration Networks. While you don't have LHINs in Alberta, you do have great Pain Assessment and Symptom Management specialists. If you would like to get specific details about finding services in your area, please write to our team of experts on Ask a Professional

Lori, you are not weak for crying and you have every right to express your emotions. That's what makes us human.

I hope you'll write again soon and let us know how you are doing today.
Thinking of you.
Colleen
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Reply by Tian
24 Apr 2013, 5:55 PM

Dear Lori

JennJilks does a great job of presenting how I personally would proceed if I was in the situation you are in. However I am a volunteer in a palliative care ward and that experience has enabled me to hopefully be better prepared for that situation with my circumstances and my personality. That being said, I doubt that when the time comes for me that I would be totally immune to fear. And I'll go a step farther than Colleen and say that each journey at the end of life is unique just as each individual is unique so there will always be doubts. But as JennJilks implies, the fact is that the reality will not change and must be dealt with. Please keep us informed as events unfold and how you are coping.

Tian
 
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Reply by sunflower1973
25 Apr 2013, 4:29 AM

Hi everybody,

Im doing ok.  My mom is having her surgery on Monday, don't know what type until sentinel node mapping is done earlier on Monday . Her surgeon say it should only be a lumpectomy but also he said infront of us both after he removed her cyst that there was a 99.9 % chance the tissuse surrounding her cyst was bengin. Sooooo............. we will deal with whatever happens on Monday.  The news has affected my dad's stomach so he has lots of gastro discomfort, could be caused from a myriad of things....... treament, body system disengration, stress..................  His respitaroy system has not decilned only some shortness of breath........................

I went rouge on the weekend and told my cousin what was going on, she is the closest thing I have to a sister as I am an only child.  I fell a lot better talking to her about it.... My parents have been keeping thier health problems a secret from family other than me since my dad was diagnosed in nov 2011.   I just went on instinct and called all my uncles and let them know what was going on all of it and asked them just to support her... Thought she needs all the help she can get right now and not isolate herself.  She would not acknowledge my existence for 36 hrs but then she called me and said it has been really unfair to have me carry this burden by myself.  Then she further said she has now realized that you need to talk about and have family support you.  Her being bullheaded said she learned this from all her literature.....

I'm coping ok, feeling much better since I feel I have a bigger support network now, even if they dont help with care just for emotional support.   Yesterday my body shut down a bit and I was having muscle spasms all over and my monthly cycle has come early due to stress.

My cousin is going to be with me on monday that will help, I love my husband so much but i feel more comforted by a blood relative when dealing with my mom's health issues.   Going to try to have a little fun on Monday sunday my hairdresser is coming over and i'm going blond with breast cancer pink highlights, I feel I need to do this to support my mom.

Read about raditation therapy i'm petrified of how my mom will tolerate the treatments...... Guess take life second by second.  I really wish my parents will allow me to go to thier appointments now so I am in the 100 percent loop of thier treatments.

huge virtual hugs
Lori 
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Reply by JennJilks
25 Apr 2013, 12:33 PM

My late mother refused to allow me to go with her to appointments. I'm still not sure why. I accompany hospice clients as a volunteer and take notes. I counsel all of my clients to take someone with them. Same with my spouse. Once, he misheard test results and it caused us much worry, as I was not there. He has hearing issues. I can empathise!
My dad tolerated radiation well, as did mom. But it didn't 'cure' them.
Dad ended up with delirium, due to an infection, which went undiagnosed in the ER. We suffered with this for weeks until his GP phoned. This is the kind of thing you need ask an oncologist: what side effects, e.g., infection, can you expect. Delirium is treatable, dementia, which masks it, is not. He had both.
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