Amy's Daily Journey

Amy, I hope you have the people who overstepped the boundaries real your emails and "hear" what you are saying... When my mother had terminal cancer I was one of her caretakers. I was there during the work week so my stepdad could work. It was such an a wonderful opportunity for me. One of the things she taught me was that she didn't wanted to have people always sad around her. When she was in pain she wanted somebody there with her to hold her hand and even try to joke when she was awake. It helped he get through it. She knew she was sick and didn't need people to remind her of it and make her feel worse than she already was. I wish I could be near you...you are such an amazing person.

My best friend's name is also Amy. Every time I read your posts it reminds me of her. You both are so compassionate and have a wonderful way with words.

I hope you had a good day and was able to enjoy some of the "little" things in life.

I appreciate you telling your story Amy! It makes sense that people's bizarre reactions would be annoying. It makes total sense too that you wouldn't want to dwell on negative stuff, but also don't want to not talk about bad things at all. Balance .

Sometimes people get a bit weird around these kinds of things because of their own fears, realizing their own mortality, the fragility of life, and also because it is almost impossible to accept it psychologically.

I think you're a beautiful person, and really the most inspiring thing is how much good is obviously in you. I hope to grow into such a good person... not that I'm no good now, but I still bite sometimes when I'm scared

For those of us who have family members with a similar struggle as yours, can you tell me what things you'd like people to do/say that would be the most helpful for you?

Amy, I am so thankful for you. You are very much loved, and I think of you often.

Sometimes what helps me most is when people just sit with me without expecting a long conversation. It's difficult for me to stay concentrated for a long time. Sometimes light conversation is good, and the deeper stuff needs to have a definite ending at some point, but I am not good at setting these boundaries. I don't want to hurt anybody's feelings so I usually keep talking.

What is good to say are mostly things that reassure me that someone is here, that I am not alone.

It's strange, usually when I write these emails, I get loads of replies back. Today I got no email reply from my list and three replies on here. Not that I am writing these emails for people to reply but I like the dialogue and it helps me feel connected.
But today, out of 103 emails sent, I got no reply at all.
It made me wonder if people just don't know what to say, and that made me feel really alone.

When I write something that is more humorous and lighthearted, I get tons of replies. Today, when I wrote about something that is so real for me and so painful, there was almost no response whatsoever. That really makes me wonder if I have a completely wrong expectation or desire. If I can't share the reason why I am writing these emails, if this part (the most important part) of the journey causes everyone to go silent, then that really hurts.

So the question what is good to say is a really good one! There is nothing anyone can do, but there is a lot people can say that make me feel I am still part of this life, part of this world. Including me in everyday talks is as important as letting me talk about my fears. Laughing with me crying with me, sharing my fears and joys equally.. as long as it's not all talk about what happens at the funeral or who to invite or who I have put in my will... And lately that seems the going topic here. There is too little NOW and too much THEN.

The more THEN it is the more I feel lonely in the now.

Thank you for your reply it made me feel better after a day of feeling rather lonely!

Much love,
A

Amy, I'm sorry that people didn't respond to today's email, and that you felt alone. I have made lighthearted comments about my medical issues, or my son's, and people haven't known what to say, or how to respond. I've had them comment on the fact that I'm making a joke about it, and I tell them I can't control what is happening, but most of the time I can control my attitude, and my response. I don't deny the pain, or the hard stuff, but I don't dwell on it, either. I hope you can feel supported and heard here, no matter what you decide to share. Much love to you.

Thank you so much for this message, tametec! I appreciate your comments so very much all the time.

A

I'm sorry you feel lonely because you didn't get replies today. I have been mostly giving you hugs because I don't know what to say. I admire you greatly, as you know, and I look forward to reading whatever you write.

Most people don't want to face their own mortality, and reading the nitty-gritty is difficult. I wanted to say how awful it is for those people to be discussing what to do with your ashes, and things like that. You shouldn't have to hear that, unless it's something you want to discuss.

I can understand wanting a normal conversation! People don't know what to do or say when someone is going to die. I totally checked out when my mother was dying, not because I didn't love her, but because I didn't know what to say. I feel very sad about that, as we didn't say good-bye or "I love you" at the end. I couldn't handle it, so maybe she couldn't either.

Please continue to share whatever you need to. I'm glad you could post how you felt about not getting replies. It's not that people don't care; I think it's because of how much they care, and a fear of saying the wrong thing.

I hope you have a peaceful, restful night!

Love,
rainbow

Amelia,

I'm glad you let us know what you are feeling and thinking. I have not been responding for the most part, because mom taught me not to disturb someone when there sick. That is the tape that is playing in the back of my head. So, thanks for setting me straight. I look forward to reading about your journey no matter what you are doing or how you are feeling. Rest easy tonight.

GTGT

Thank you for being honest with us, Amy. I am so sorry you felt alone. I hope you feel supported and loved as you are - very much so. You are in my thoughts dear friend. Much love.

I'm really sorry that you felt so alone.

I'm so sorry that you were lonely. I sometimes feel like I don't know what to say, not that I'll say the wrong thing, but just wishing I could give you a hug in person (it would help to know where, geographically, you are. I'd hate to know, after you're gone, that I could have come to bring you flowers, music, CHOCOLATE, or just sit with you. I realize you might not want to make this public; please feel free to send me a private message.)
The other reason I might not reply on PC is that, at that moment, I have so many other things on my mind. But know that I read all of your daily posts, look forward to them, and think of you often during the day. Hugs.

"Day #15

Hi everyone,

well, I just can't write an honest email without telling you that my feelings were really hurt yesterday. Every time I write an email to you there is a lot of dialogue going on, questions, comments, stories. But yesterday my day was silent. It felt like all the voices had stopped, all the dialogue died down. And that on a day when I could have used support the most. When I needed someone to tell me that my anger was justified. But the silence seemed to reinforce that apparently I wasn't right in my feelings, that I indeed expected too much.

I thought about it a lot last night. I fought with myself, against the feeling of disappointment, the feeling of loneliness. I felt I had no right to feel lonely because I have people here who love me, right? And I shouldn't be disappointed because of course I don't write these emails to always get many responses.
But I do write them because I need to feel that I am not alone in this. I write them to talk and to feel connected. And of course I am happy when I get replies, what's the point of writing it when there is never any feedback? In that case I could just write it in my own diary. But I am putting myself out there and you all keep encouraging me to do so. But, my dear, beloved friends, if you want me to write, I want you to respond. I don't care is the response is always helpful, sometimes it's fine to just say: I don't know what to say.

Ok, that said - I am not angry any more. I found a place in my very own heart that made me feel better. I got up very early this morning and waited for the darkness to turn into daylight and somehow it echoed in my heart. So I feel some peace right now. And I ate a whole box of Belgian Seashells while I sat outside waiting for the sun and the birds. All 24 of them!! I thought I would regret it in the morning, but I am okay. And it's so funny, I can do all these things now without feeling the slightest regret. If all I eat all day is chocolate, then that's the way it is. It's better than eating nothing.

So for right now, life feels almost alright. I am not in too much pain, I am not too tired and I am not too nauseous. My nurse is coming in an hour to take me to my appointments and I am actually looking forward to see her. She is very funny and outspoken and I am starting to really love her.

By the way, Squirrel Baby is now eating on his own and he is the first one on the bird feeder every morning and he is so very cute!

Have a nice day everyone,

Much love,
A"

I just want you to know you are never really alone. There are a lot of people here who care about you. I am also sorry you are feeling that way. When you don't post I worry about you. I lost my mom two months ago and helped take care of her and watched her die. She was also afraid of suffocating to death but she ended up in a coma and actually died pretty peacefully. A lot of times I didn't know what to say so I would just sit with her, put lotion on her, play hymns, turn on her favorite shows, hold her hand. Just be with her. I know that a lot of us cannot be with you but know that we are with you in spirit. Also I am glad you are watching shows that make you laugh. A sense of humor is valuable at this time. It has helped me with both of my parent's deaths. Keep posting and know that we are here for you.

Amelia, I read all of your posts even when I am not responding much. This has been a tough week, and your post yesterday really brought back memories of my dad's last week. I know he struggled with trying to get my mother to address anything serious with him. Up until two days before he died, she was still talking about "when" he got better, he needed to do X, Y, or Z around the house. He and I, and he and my older sister, talked about things both serious and light and just hung out together in silence. My younger sister and my mother would quite literally shush him or walk out of the room when he tried to talk to them about his impending death. I think one of the things that really helped my dad was when the parish priest came over and just sat and talked with him. The priest was the first person to ask my dad if he was afraid. It was the first time I heard my dad express fear. We gave them some privacy to talk after that, and my dad seemed calmer and more at peace after that talk. We had one relative who came over and kept pestering my dad over and over about what he was thinking or feeling, until my dad, in a funny way, told him it was none of his business.

Not sure what my point is. Just maybe that every person handles the situation differently and most of us were doing the best we could, and none of us (well, at least the somewhat emotionally healthy among us) minded when my dad set limits and told us what he needed or wanted from us. I hope you can speak up for yourself and set some limits you are comfortable with. Take care of you, Amelia. Much love to you.

When I read that, I was thinking to myself that you were absolutely right.

I'm sorry that I didn't say anything.

I guess I should say, that of course the emails are mainly addressed to the email list, so when I talk about hurt feelings, I am mostly talking to the people on the email list, not the people here on PC. I know you all have your own battles going on, so please don't feel you have to respond all the time.
In emails we don't have the HUG-Option, but here we have and I know you are reading and I know you are with me..

So please don't think this was directed at you. But I am sharing the emails word for word here, so that means I am also sharing my honest thoughts here..

But please know that I am so grateful for everyone here who is with me on this journey! I know even if you don't say anything, you are with me. And I love you all for that very much.

Amelia

When my dad's time got close, he told me he saw (not just dreamt about) his mother and his aunt who took care of him when he was a little boy, and that comforted both of us, i think.

Sorry you felt so alone Amelia. I think people might not necessarily have the words or know how best to help or comfort. At least that is my case.

I am very often touched by what you write (at times it even comes quite close to home and I hurt along with you) and how very brave you are, but i feel that whatever I write would sound so trite and pathetic compared to what I feel you'd need. You are so strong and such a fighter, I admire that. i just wish i could do something but feel so powerless tbh.

But I do read your thoughts (I always liked reading your threads, even before knowing about this current situation) and even though i may be silent, a piece of my heart flies over to you at the sad parts, as you say. Just know that you have a fount of good wishes & thoughts heading your way.

we are always here for you we love you ♥

I don't reply often. I read your posts though, and I wanted to thank you for that: it is a true privilege to be allowed to do it. I would love to give some useful advice. Or at least do something, like when no words are needed and you physically sit next to a person to just be there.

Like for others here, your words often go straight to my heart, but most of the times I feel that I'd be pathetic and of no help so I just read and take time to think about you. I'm sitting next to you in those moments, in a sense.

I say eat chocolate all day every day if that what makes you happy.. You deserve happiness so go for it....I agree with the other poster who was wondering where you lived...we have some amazing chocolate places in my area and they deliver all over the US!!!

Have a beautiful day enjoying the outside

Amelia, I wanted to say hello and send you my love today. I'll tell you a little story about my dog. Every other Thursday, I get a box of "Mom's Meals" delivered. It is usually the same driver who delivers them. He almost always brings a milkbone treat for Jewel. She knows the sound of his delivery truck, and she gets excited before I even know he's arrived. She starts "talking" and dancing and runs down the stairs. He tells her she has to wait her turn, and doesn't give her the treat until he sets the box in the kitchen. But she can hardly contain herself! If I'm not home when he delivers the box, he leaves it in the foyer, and sets the treat on top of the box, so it's there waiting for her when we get home.

Today, she didn't want to take her eyes off of him as he came up the stairs, so she actually walked backward up the stairs, and he told her he was impressed. When he hands her the treat, she gobbles it as if it's her favorite thing in the world. I bought the same brand of treats a few times, but it wasn't such a big deal for her (although she has others that she eats willingly). She is a very social dog, and the best part of the milkbone treat, for her, is that she has a visit from the deliveryman!

She also knows the sound of my homecare worker's vehicle, and will run down the stairs to greet her, and then dance in circles at the top of the stairs. She does the same when my worker's son comes over occasionally. If he sits down, she sits right next to him and adoringly stares at him.

At the moment, she's resting up for the next bit of excitement. She has a blanket-covered storage bin next to a window, and she likes to lie there and watch the world go by, with naps in between, of course. I think I taught her that.

AmysJourney wanted me to post a message here just to tell y'all that she's not feeling so well and probably won't be on PC for today. But she sends her regards.

Amy, just wanted to let you know I read all your "days"- thank you for them. They mean a lot to me- more than I can express. I tried to several times but words/language failed me.
You truly are a very special person and I feel privileged to have met you (though only through your posts).
Read Yearning's post, I'm thinking of you.

Hi Amy - Here's some chocolate for you for when you wake up tomorrow!
Hope you are feeling well enough to eat it all! mmmm