1

(18 replies, posted in Grief Management)

Marc-

I am so sorry to hear about your loss.

Take care of yourself and know she's always with you,

ToniaK

2

(7 replies, posted in Grief Management)

SarahLindsay-

My Grandmother passed away 12/18/08. She was like my Mother but I can't say that's the same as what you're going through at all.

Grandma was the person I called when I had good news or bad news or needed advise. She was the one I trusted when I needed an honest opinion and one of the few people on the planet that could calm me down.

Three times this week, without thinking, I went to call her. The moment of realizing that she wasn't going to answer and that she really wasn't ever going to be home again made me think the world was crushing in on me. It was horrible. I have times that I feel like things will never be "right" again.

Christmas and Easter were hard. I cried most of Easter Sunday. She loved Easter.

I can't believe its been almost 4 months already but there hasn't been a week that's gone by that I haven't cried at least 4 times. The 18th of every month is a give in "freak out" day.

I was her caretaker and she was my best friend. I remember that last week too. All I could picture for months ( and honestly sometimes even now) were those last horrible degrading days. I spent a good chunk of time wondering what else I could have done. Should I have been there more? Did I do everything the way she wanted me to when she could no longer communicate? I felt guilty too. I should have...made her go to the Dr. sooner, maybe pushed for more opinions, been more understanding when she couldn't eat, had her go the hospice sooner...the list continues. What calms me (once an awhile) is that I know how much I loved her. Tons and tons. I did the very best I could for her and I think she knew that. It may not have been perfect but I was there through all of it and I think that being aware that they knew how much you loved them makes a difference.
What has helped me is looking a pictures of the way she was. I have a framed picture of her on a shelf in my living room from a few years before she was ill. I look at it constantly and tell myself that's what she looks like where she is now. Maybe even a little younger if she had her way. ;-)

Hang in there. Give yourself time to heal. From what I can tell that kind of pain never goes away but it dulls a little. She knows you loved her and she knows that you did the very best you could.

Take care of yourself.

All the best,
ToniaK

laker-

I really am sorry about your Mom. I had never heard of this type of Cancer until my Grandmother ( she was 83) was diagnosed the end of Sept 08.

I remember asking the same question you did. " What's next? What do we expect? Will she be in pain?" Its a helpless feeling.

My Grandmother stayed in her home until 4 days prior to her death. At that point we were fortunate enough to get her into a residental hospice. We had been doing the care ourselves and with the help of a family friend and a Nurses Aid that would come in for bathing. Oh, and a nurse that checked in every few days.

They did end up giving my Grandmother something for agitation a few times. I couldn't tell you what. My grandmother was severely diabetic. Looking back I feel some of her agitation came from diabetic shock due to the fact we could no longer give her insulin with any results.

I can tell you this ( and this is just my experience.) The last few days were relatively peaceful. Her pain was under control and she slept a lot. ( Again, maybe from diabetic shock or just from the large amount of drugs?)

However the things that scared me were this: She would kick off her covers and kept trying to speak. I couldn't understand her and that made me feel bad. She did halucinate a few times. I had to lie to her and go along with what she was saying to calm her down. (i.e. She thought she was at her condo and it was flooding. She wouldn't lie back down in bed until I promised to turn the water off. Of course she wasn't in her condo and there was no water) There was also a time where we really had to work hard to get her to stay safe in bed. She kept trying to get up to "walk to heaven".

We got a really good pamphlet on the stages of dying. It broke things down into a rough time line and gave us an idea, based on the clues her body was giving us, how much time she had left. It was very helpful. I think most hospice programs have something similar. The last day she slept mostly. Her breathing became more labored. She passed away 12/18/08. It seemed so long but so fast.

I hope none of this was to much sharing. I can't over state how different everyone is. I really am sorry you're having to go through this.

The best thing I did was talk to her before she got really really ill. We told each other we loved one another. I asked her questions I'd wanted to ask her. We cried about how unfair it was. I'm glad I didn't put that off. As the disease spreads they become tired and more medicated these conversations can get difficult to have. The sooner the better.

Take care of yourself and your family. Love each other.

All the best,
ToniaK

4

(10 replies, posted in Introductions!)

Smash-

Just read your story. Ugh, I remember the feeling when my grandmother was diagnosed. I wanted concrete answers and got soooo frustrated when I felt like nobody would give us any.

My grandmother was 83 when diagnosed and had a list of other health issues prior. That being said, I will say that juicing seemed to help. She was big on Ensure and rice pudding also. Getting my Grandma Ina to eat was an ongoing battle. It was hard on her too. She knew she should be eating and wasn't hungry. That scared her and caused anxiety. I remember going to the grocery store almost everyday hoping to find something she'd like.

Keep posting and asking questions. This board is a huge source of support.

ToniaK

Jan-

I am so sorry for your loss. I know it is so hard. I hope that you take care of yourself.

I'm sure your Dad knew how you felt about him. My mother in law works in nursing homes as a RN. She said that sometimes people just don't want lots of ( or maybe not any) loved ones around. I wasn't there with my Grandma and I was her caretaker too. Its so hard but I have to tell myself that it was for a reason and she knew how much I adored her. The bigger picture was that she is with her family in heaven and not in any pain.

Be kind to yourself and know you did all you could.
Tonia

6

(10 replies, posted in General Discussion)

Gavin-

Thanks for the update. I'm so sorry that you had a rough holiday. Though its been mentioned before Jeff is right, the darkness and weather really do effect things.

Hang in there and keep updating us.

Tonia

You too!

Just lost Grandma on Thursday. The holidays are not "great" this year. She was diagnosed in Oct. Happened so fast.

Still a little numb. Thanks for the post. Helps me not feel so isolated.

Love
T

9

(13 replies, posted in Introductions!)

Marc-

Oh my gosh my heart goes out to you! This is such a blow. My grandmother was diagnosed in October. That shock is something that is so hard.

This is a GREAT place for support and help. Its the best I found.

My grandmother was jaundice and 83 years old. She was diabetic and had a heart stent put in a few months prior. Her health was already not the greatest. She opted for surgery ( I think it was a whipple but I'm not 100%) they took out her gallbladder, bile duct and part of her small intestine. The advantage of the surgery was not having to replace a stent every few weeks. While they were in there they were able to see the cancer had in fact spread. My grandmother opted for no further treatment. They didn't give us a "timeline" to speak of either. Everyone is soooo different.

It sounds like you have some good doctors. Second opinions are always suggested. My brother and sister in law live in Sydney but I don't know much about the health care system. Wish I could help more.

If you need anything let me know.

Love
T

Thank you guys so much. Your kindness helps me relax a little and refocus me. I can't fix everything and you're right, I'm sure feelings of guilt are really coming into play right now. I still love my family very much but sometimes....grrrr... ;-)

Thanks again. God Bless

Tonia

Hi everyone

My Grandmother and I were very close. She passed on Thursday. Its an odd feeling. Its still not real to me.

What is real is how many family issues have surfaced. A big part of me wants to give the family a huge lecture about support, love and continuing on. If life were a movie, I would do this and then they would all understand and start working together. The camera would pull back to reveal us hugging and laughing and then we'd fade to black....

But this isn't a movie these are real people and my "lecture" would help nothing and I usually get to nervous to get out what I want to. Between the loss of the "head" of our family and this being the holiday season everyone is rubbed raw. Some are mad at others because they don't think other people were "there" when they should have been during the illness. Others feel like they were taken advantage of. Some others feel they were left out.

My question is this. Will it get better with time or is this a permanent issue? The other odd thing is that some in my family have openly told me that they "assume" I'll take my grandmother's place family wise. To be the one in charge and organize everything.  I don't mind the idea sometimes but aren't I a little young? I don't know if I have the experiance to do it right.  Shouldn't there be someone in my Mom's generation to do this? None of the 3 are interested but I keep hoping...

Thanks for letting me vent. I miss her so much. Jeez do I ever miss her.

Tonia

Great idea!!!

13

(5 replies, posted in In Remembrance)

Krysta-
I am so sorry for your loss. My grandmother passed the same day at 5:25AM from bile duct cancer also.

Hang in there and know that it does get easier.

Tonia

Thanks Darla,

Its just such an odd feeling. I feel lost and almost panicky.

15

(11 replies, posted in Introductions!)

Alex-

Thought I'd say hello! I also can't offer answers but thought I would greet you anyway. ;-)

This is a tricky disease. My Grandmother was given 4-12 weeks and she passed in about 8 weeks. ( She opted for no treatment. 83 diabetic with a heart condition) That being said, there have been pleanty of people that have had much longer than what they were told by the medical profession. People used to always ask " How much time does she have?" and I'd say "She's not a carton of milk with an expiration date". ( I'd say in in a pleasant tone not rude or anything...most to the time ;-) )

Everybody is different. Information, hope and kindness helps.

Much love! If you need anything let me know!
T

Carol

Just read your post. I remember how our family felt when we realized there was nothing left to do to help my dear grandmother. I felt like the air had been sucked out of my lungs and everything stopped for a second.

The good news is what you high lighted. Its the time you do have. Lots of talking and reminding each other how much you love one another. We took lots of pictures. At first it seemed odd but now I treasure them so much.

Prayers to your family.

tonia

Thank you so much for all of the words of support.

I try to remember that we were "lucky" in some ways when it comes to this disease. I miss her so much and I'm scared of how much more I know I'll miss her. I'm not even sure what I'm supposed to do now that I'm not taking care of her.

Thanks again for every thing
Love
Tonia

Typing the words just hurts. What am I going to do without my dear Grandmother but more importantly my dear friend?

This moved to fast. I'm mad about that. Diagnosed 10/13 and gone today?

19

(7 replies, posted in Introductions!)

A recipe book would be a great fundraiser for this site too!

Hi everyone,

This morning we had to move my dear grandmother into Res Hospice. I feel so guilty.

We just really had reached the end of the road with the at home care. I had been taking time off of work, my aunt and I juggled the schedule with a dear friend that helped with overnights.

This past weekend she started sleeping more and then would wake up around 3am. She'd start to test her blood ( diabetic) even though she really doesn't have to anymore. One night, after doing that she started paging through the phone book looking for friends to call and talk to. At 3 AM. ( She wasn't very with it) Twice she had us tearing the house apart looking for a folder she needed. Only to realize at last that this was a folder her and I had found and gone through 2 weeks ago. She had forgotten. Mostly she doesn't know where she is or what time of day it is.

The main issue that came up was the influx of medication and her getting up at night without telling anyone. She used to try to use a walker but recently had started refusing. This means no sleep for the night over person because you keep waiting to "catch" her up and about.

I talked to her and told her she was being moved. She opened her eyes and said that was fine.

If she's fine with it...why am I not? These people taking care of her are amazing. I guess maybe its because I know that now I have to slow down and soak in what's going on. My Grandma really is dying.

Ugh. This sucks. ( sorry if I offended anyone) Christmas really isn't that fun of an idea either this year...

Thanks for letting me vent.
T

Ana-

When I came to this place the first time I thought " My Gosh, I'll need a vocab cheat sheet. How will I ever know what anyone is talking about?!"

I started googeling everything. That helped.

I can't answer all of your questions but I can help you with your second question.

I'm my grandmother's caregiver ( her name is Ina. She's 83 and my best friend ;-) ) she has had the lower back pain and the sweats. She did not opt to have any chemo treatment. This would tell me that those symptoms in her experieance are Cancer related not chemo. Because she hasn't had any.

We have her on Oxycoton for a long acting and then oxycodin for as needed. When the sweats start we use a cold pack or a cold wash cloth.

As far as your dr goes. I do understand his basic idea. The patient needs to be involved. That's great, but there may be decisions that you will be needing to make and you'll need information. Some stuff, like you've run into, your husband may not want to talk about.

Everyone here is amazing.

Much love and blessings,
Tonia

Jeff-

Yo probably hit the nail n the head. We got the humidifier going now and have been using Aloe. Seems to help. I think it may be ascites....she's just moved into hospice today.

Thank you for all of your help!

Tess-

What a great poem.

I talk to my Grandfather all the time. I let him know that Grandma is coming. I vent when I'm frustrated with the situation.

I think there's something comforting in that.

24

(18 replies, posted in General Discussion)

My Grandma was a huge diet soda drinker. She was a huge diet anything eater or drinker.

25

(12 replies, posted in General Discussion)

Carol-

I am so sorry you are having to deal with that on top of everything else.

I know I was going NUTS trying to deal with the insurance company. It is just such a pain.

Stay strong. Know you aren't alone.

Love
Tonia