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Reply by winter
21 Mar 2015, 2:30 AM

Hi Witts end;  

A friend sent me a message, stating there was a person in need of some words of comfort...

I have tried 3 times to write this, and each time I deleted it.
I am not a professional therapist, or a dr. with a PhD, I am just a woman who went to hell for a period of time.

I was in some much need of comfort, support, someone to understand that was, other than my hubby.

I lost 2 parents in 3yrs....one to pancreatic cancer (father age63) found out Sept 22, and Nov 22, 2008...and
NASH, Cihorriss of the Liver, kidney failure, esophageal varies, stomach varies, intentional varies,
severe anemia.....the basis of my mom she passed away august 12.

I was alone and by myself, at home, crying, and searching the web, when I came across this site, something made me signup, ...I don't know what it was, as I read the stories of real people's lives, the hearts of total strangers, I knew that this was my place, the place I could pour my heart out, even if there would be nothing that
would help in a way....I hope that sorta makes some sense.

I have not read anything(meaning anyone's response) for a reason. Everyone has their own thought pattern,
and mine is not like the normal persons....I guess I think strange, I have been told that, and sometimes, people get mad, but I try.

First, I am so sorry for your loss....I could not imagine what that would or is like.
May I ask you a question? How lose were you and your hubby?

My name is Tammy,

I am the only child, of two very different kind of parents.
I grew up with alot of aunts and uncles, cousins, no family friends, my family seemed to just stay to
themselves, when their children came around.

My father, well, he socialized nil....or at least that was what we thought, he seemed to prefer outside of mom and I....I never to this day understand him for it.

Mom was to a point, but she also was aloner....if it was family she was the social butterfly, to neighbours,
strangers, she was the bitch, to crabby wife of stanley....

My father had a saying, if he could buy a castle, he would put our there, to block out the world and all out.
I was always told that my father was aloner....I guess yes he was.

I know I am going off a bit, you could go to where I wrote about what happened, with mom.

I am trying to figure out how to explain what I am thinking, I am sorry if I sound unemotionless, the memories are difficult ones....extremely painful ones.....it's taken me 1 1/2 years to settle my nerves, to not be jumpy when the phone rings.....that is what my mom did to me, well part of it....

When my mom start to feel I'll, it was actually before my dad, it was I believe, looking back, to that March in 2008....her kidneys began to fail, that was our beginning to hell....she was in the hospital for 3 wks, I was on call seemingly 24 hours a day....she wanted me there from the time she was awake to everyone was in bed....
My mom was a large woman 370lbs ...she couldn't wipe herself, barely walk, or bath herself, she needed help,
that was where I came in....she was too embarrassing to have anyone do it.....yes some nurses are very rough
I can vouch for that......

I thank God I had a great hubby......cause mom demanded my attention my every minute attention....leaving
him to watch our son....the problem was my son wanted mommy.....so hard to do.

With that stay, we found out she had had a heart attack, about 2 yrs earlier....

The reason I am telling you this is to show you the demanding person she could be.....it was the start....
mom never drank or smoked....but she developed a fatty liver, caused by diabetes, she had it when she was 40 yrs old. The dr, never seemed to get threw to her.

1st stay, During mom's stay dad only went once, his reason for not, was in order for me to be there for her, he would take care of my son, while my son went to school all day, and my hubby was off at 5pm.

My mom was very hurt....now you would think that when family visitors came that I would be allowed to leave right....well wrong,lol....no I was allowed to go as long as I'd be back before they left .....

This was the beginning, of mom's rule.....this rule continued after my dad died, and while I cared for my dad at their home tell he died....and when she moved in with us the Christmas before she died, and when she entered the hospital she knew she was never coming out....I knew that meant I would not see my own bed tell she
died....this was a fact. Only when she entered palliative care did I see my bed, and then I felt so guilty. My
mom still verbally made my life hell....she was making me pay, for killing her....I had to live with this....so I
understand hof you feel.

Now I loved my mom....and dad....very much.....

The rest you can go and read about, an on area somewhere on hear.....

I don't know what made your relationship strained before.

That alone can harbor anger, resentment alone.

How old is your mom? Is she from the old school, where I gave you life and you owe me....

The strain of carrying for a spouse, you love, and their passing, let alone is enough to take a piece of your
heart, and then to take that damaged broken heart, and mind to care for a parent, who doesn't seem to care, that you are still I your own turmoil, and that you are there to be a caregiver to them.

That alone is hard, not having your spouse there with you is painful, and I can only imagine its tearing your
heart out. Not having that support, is Making it harder on you.

For me giving advice is not easy at all. Cause advice well can so easily be taken wrong by all others reading.
that is why I do not read what others write. I go with what my heart says.

Do you have any friends...any kind of social life?

You did one thing good, you found a sit that has a lot of people with heart.

Writing to everyone, just getting your feelings out, thoughts, good or bad!

Sometimes you can get people to just come in and sit with your mom, in order to just get out, to breathe, to air the cobwebs out, so you can be able to go back and handle what she dishes at you.

That was my life saver, when it lasted....

The next was finding something that would allow me to tune her out, a hobby.

What about a center, that can interest her, where she would enjoy being there, while say you go and have a
coffee.

I tried to write a journal, but I just couldn't seem to write what I was thinking, cause I for some reason was
afraid to, now I don't understand why....but it is an idea. ..or even a recording yourself, and your thoughts....

I don't know if anything wrote even helps you, but I am here, if you want to chat, or just talk on here, sometimes a complete stranger is enough to get you threw those days you'd like to just walk away and not look back...☺
I'm here...I'm sorry if this isn't anything that helped....

😊tammy



 
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Reply by Wingman
21 Mar 2015, 2:37 AM

Hi Wits End.

I share your feelings. My best friend has a terminal illness and has been given a grave prognosis. I walk beside her in this journey and there are times I struggle. I feel ashamed....embarrased....that I have trouble copimg at times. I say to myself....this is not about me....this is about her.....and yet what I truly wish is that someone would once ask me How am I Doing. They occasionally ask about her treatment and how things are going...few are privvy to the particulars of the dx....and I feel so very alone.
it is a difficult path and I can only believe that perhaps some are chosen to walk it...to know fear like this and to stand tall. I have no words to advise you on dealing with others...I can only say that I know that you sleep and breathe this thing....and that makes it about you. You have stood tall over the years...you will dig even deeper and find what you need for you and for her.       Stay the course.              
     WM                                                                               
 




 
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Reply by KathCull_admin
24 Apr 2015, 3:19 AM

Hello


Wingman forgive me for taking so long to ask How are you? I really would like to know. It is often all to easy to forget the family and friends who as you say are walking alongside and struggling with worry and caregiving.


KCBJ how are you adjusting to what must be new routines? Have you been able to get out more socially?


Winter/Tammy  I am curious what kind hobby or outside interest did you turn to when your mother was alive? Have you continued it?


NatR and JennJilks thanks so much for your insight and support.


Wits end  as Winter mentioned - you have been caring for family for some time now. Were you able to have time to grieve your husband's death? Have you been able to find that refuge or self care that the others have mentioned?


You might also be interested in reading a thread Razz started  Help - I may lose my mind as the only caretaker for my 93 yr. old mother  if you post on her thread I am sure she will respond as well.


Take care all and look forward to hearing from you as you are able.


Katherine

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Reply by Wingman
24 Apr 2015, 2:16 PM

It has been a tough go. My friend had very aggressive treatment and it was a struggle. They had to stop for awhile for inability to tolerate. I thought she was dying. I thought this is how death comes- a tough time. 
After a break they were able to do a couple more rounds and she became better and better - stronger and more tolerant.
The tx ended last week and showed a very good response although not complete. No more appts for 2 months. This is good news......this was what it was about and yet it is jaded. Onc said to expect regrowth in 6-12 months.
I am grateful for her great improvement....day to day slowly gets back to "normal"..
The weight however remains heavy. While on the outside-the day to day has become unburdened with appiontmemts and struggles- and I am unspeakably grateful for this, the weight tugs at me terribly amd for that I remain frustrated with myself...and guilty for carrying it although I do realize there are many who share this burden- this constant cloud of concern.
And so we carry on...and we smile and we plan and we live. I continue to take absolute peace in my precious pony and what she brings me is invaluable. I have struggled with the need to keep this peace absolutely private and have unwantingly allowed that to drive me to rearrange my schedule with her....but we do tye best we can.
Finding balance where it is needed is I suppose what enables us to continue to he our best for our best.

Thank you for checking in, looking forward to wonderful sunny days and planning the good life.
WM

 
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Reply by wits end
23 Aug 2015, 11:49 PM

Hello everyone, it's been a very busy summer. Mom finished her chemo in May and the doctors said they will not be giving her anymore. She has a slow growing cancer ,but it's still growing.  The last couple months have been really tough and i find that she has slowed down considerably. She has lost weight even though she continues to try to eat more often. She has had several episodes that include not being able to breath to having angina attacks, upset stomach (sick at times) sleeping longer for her naps. Her legs are unsteady as well. Any effort on her part leaves her breathless.
I guess my question is .......Are these all signs of my mom going downhill? The doctors don't say anything but I wait for the other shoe to fall.
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Reply by JennJilks
24 Aug 2015, 2:12 AM

You poor thing. This is such a hard time for yu.
If they aren't giving any more chemo, I imagine what you think is true.

Deep breath. It's not your fault. You cannot do anything to change this. When body and soul fail, we must just make their days as best we can. Love her. Love yourself.
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Reply by NatR
06 Sep 2015, 1:40 PM

Dear WitsEnd,

As Jenn said, it seems like this could be a continual decline....it is so very very hard to deal with - the end of treatment and not knowing what may happen next.  I have seen a lot of elderly in my work in nursing homes...and it was so surprising what happened...to each person...depending on their stamina, their conditions, their illnesses, their desire to keep going...it is a very unique thing - for each person.

As the caregiver and loved one you have to travel that unknown path along with your mom and although the signposts arent there - you know that things are winding down, that your mom and her body are showing you the need for rest...and that is also so very hard.

I hope that you find comfort in our notes - because we all have loved and lost loved ones - its just not easy to say...this is the recipe...this will happen.  But in a way, waiting and watching is your way of easing into the inevitable...losing your mom...and you will have great comfort from having been beside her all the way...and we are virtually sitting beside you and supporting you as well..
Hugs,
NatR 
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Reply by KathCull_admin
08 Sep 2015, 9:42 PM

Hello
Wingman and wit's end - seems like might both be living with a lump in your chest. Worrying about what might happen next.  Hoping that things will get better/not get worse. 

As JennJilks and NatR have said - being there and supporting those you love - and finding a balance.  

This article came to mind Hope and Denial as something that might offer some ideas and comfort.

Take care
Katherine 
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Reply by wits end
23 Sep 2015, 9:37 PM

I think the other shoe has fallen :( Mom went to cancer clinic today to see radiologist about possible radiation treatment.  He came right out and told her she has 3-6 months and treatment may give her a year. I guess my question is ... Is he able to tell that from her cat scan which  her regular chemo oncologist hasn't said anything. I was worried about this before.  He also told her he can't do it at this time as she is having a esophagus stretch or a stent put in. She has been having a hard time swallowing and she now is on oxygen. I need to know.  We don't go to her regular onologist for 2 weeks.
I feel as i have been punched in the stomach.
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Reply by Brayden
24 Sep 2015, 3:11 PM

Dear WitsEnd,

You undoubtedly feel as if you have been punched in the stomach because that is not the information that you wanted to hear.
You may well find that the oncologist and your radiologist are on the same page, just that one was more ready to put a time frame to what you could expect to happen. The radioligist also may be in a better position to explain the treatment as he to knows your Mom's total picture. Having said that, I feel that only your Mom's body knows how much time she has. She will be the best one to tell you, as you already have seen her in decline. Unfortunately, the best thing to do now is to take one day at a time and make the best of each day that you have with her.
Just some thoughts. Wishing you lots of strength.
Brayden 
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