toniak
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Marc-
I am so sorry to hear about your loss.
Take care of yourself and know she’s always with you,
ToniaK
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,
ToniaKlaker-
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,
ToniaKSmash-
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.
ToniaGavin-
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
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
TMarc-
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
TThank 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
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
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!
TCarol
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
