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At 2:28pm on October 27, 2015, Mel Royer said…

Fran,

I thank you for your kind words. I am sorry about your loss.  It is so heartbreaking after caregiving for a length of time. I was Nancy's solecaregiver for a year and when she slid in to dementia after a seizure I sadly dealt with the components of dementia.  She started the "I want to go home" dialog and there was no calming her down. Then the 1000 yard stare. All of it heartbreaking.  Until finally, she passed in my armson a beautiful sunny Virginia spring morning. At least she was home and I was with her. Small comfort in the wee hours when you're wide awakeand wondering where is. I used to look over at her in her hospital bedand see that her chest was rising and falling as she breathed.  It was a comfort to me in her illness. now when I look over there is nothing there the bed is gone and so is she.God help us in our sorrow.

At 11:49am on August 28, 2015, Angela said…
Yes, I was married for 25 years last November. We dated for almost 4 years prior to that. We shared everything....chores, caring for the boys, shopping, cooking, laundry...and all the decision making. I feel lost without him. I had to take it all on, no one to share. My 21 y/o has Asperger and has no motivation to help much. My 18 y/o just started college last week. I miss him..he was a great helper. I work full time as well. There is just so much to do by myself. I alsohad to take power of attorney for his aunt. It's a lot to keep up with.
At 5:22pm on August 3, 2015, nicole irving said…

thankyou Fran , i may try a day and see how i go, just really worried that i am going to loose the plot

At 4:30pm on June 22, 2015, kathleen akin said…

I know Fran. I think all the time how it's because of me he is suffering. I actually brought it up to him the other day. It's like I'm the only one who sees the reality of what is happening. His son and one of my daughter's feel I'm not "encouraging him" enough...to fight, to find other treatments. But like you said, I am the one who gets to see him suffer. He had such a horrible day yesterday. On father's day no less. And no one called him. I was so mad. They want to be critical and then go back to their safe life.

It's breaking my heart watching this slow motion death. He is on an anti-depressant. I think it must be working because he was back to his normal self today. I'm back at work and so is he, and that's when we do best. Think of other things than his illness.

At 2:16pm on June 21, 2015, Sara Schwartztrauber said…

Hi Fran

So...we get through another of the "firsts", the first fathers day without him. I'm going to go to my sisters for dinner, I think, and blow off some M80s in is honor. My husband loved the big fireworks. I'm really dreading the 4th of July.

Our business is a handful. I probably would of locked the doors and sold off all of the equipment but he told me that he would really like to see it keep going after he was gone. I almost miss him more there than I do at home because he was def a workaholic and before he got sick he worked 7 days a week. I'm always looking for him to come walking into my office to talk about a new idea he had, or a problem we needed to deal with. If someone walked up with a big enough check I'm sure I'd walk out the door. I need to put his truck up for sale soon. I don't want it to just sit and rot away, it's worth about $40,000. But I also won't sell it to anyone in Nebraska. I just don't want to see anyone else driving it.

At 11:48pm on June 18, 2015, Sara Schwartztrauber said…

Hi Fran

We owned a transmission and repair shop for about 28 years, then we bought into a towing company. We bought out our partner about 10 years ago. We have 19 trucks and about 30 employees. We do all of the towing for the Lincoln Police Department and the University of Nebraska. We also have a contract with the Nebraska State Patrol, and I have about 800 private property accounts, so it can keep me busy. But my niece has worked for me for 15 years and she really stepped up and took over most of my responsibilities while Jim was sick, so I'm just now getting back into it.

At 5:53am on June 14, 2015, Sara Schwartztrauber said…

Hi Fran

Just checking in to see how you are holding up? Its almost 6:00 AM and I haven't been able to sleep yet, so I know how heartbreaking this is for all of us.

At 6:56pm on June 9, 2015, Sara Schwartztrauber said…

Fran

I just read your comment about "your loss". Jim wanted to badly to finish a "hotrod" school bus that he was building. He had already built one, but this one would be much cooler. He just didn't make it. He also talked about going deer hunting this year. He was able to go last season although I'm so glad that he filled his permit on the first morning. I don't think he could of gone out many times. He wouldn't even consider the idea that he wasn't going to beat this, even though they told us from the beginning we would be lucky if he had a year. He fought for 13 months and worked up until about 2 weeks before he died. He even went to work with his chemo pump on. Cancer took so much of who he was away from him. I thought that I had prepared myself for his death, but how do you prepare to lose your heart? We had been together since I was 19 years old and I just don't even remember when he wasn't here for me to turn to. On top of that, most of his family has turned on me, on us, over money. I just hate it that all they care about is money when our kids would give everything they have just to have their dad back.

At 4:02pm on June 3, 2015, kathleen akin said…

Hi Fran. Yes Rocky is on some hard hitting pain meds. He was before all this due to his arthritis in his back and knees. I'm glad they are giving him whatever he wants, and they do help, but he gets pretty dopy from them. I feel like i need to explain to people, but not in front of him. Last night people from the church were over and I brought up his cancer (they didn't know) so I hope they knew enough that is why he was acting the was he was. I feel very protective of him and don't want anyone to think poorly of him...but that's still going to happen unless they've gone through something like this themselves. I know I never have. He also used to be an active addict, so there's that. I think with what ever they give for his pain, his need for it will just increase. That's part of being an addict. But it's a different thing now. What is the point of being in pain when you are dying and there is nothing to stop that??...let him not be in pain!

How are you handling being retired Fran? I don't know what I would do with myself if I didn't have the distraction of work. I am just an office assistant at a college, but it is a distraction into the other part of my world before I go home and see how things played out each day for Rocky. Some days worse than others.

I just don't know how anyone gets "used" to this. How this ever gets better. I can't see it. I think about it and I panic, I cry, I have to call him up to hear his voice, hear him comfort ME. I'm an awful wife! He has to constantly comfort me, when I should be the one. And this is moving so fast, but from what I read on everyone's posts it kind of goes like that.

Are you finding a way to acceptance?

At 12:45pm on June 3, 2015, kathleen akin said…

Anyone else having issues with this site? I couldn't get on for days. I wanted to reply to Fran who wrote to me at the end of May and this is the first time I've been able to get on here. Oh well.

Rocky is slowing shrinking. Is that cancer or chemo? We went to see my daughters in Ft Collins over the weekend and I know they were shocked at his appearance. His once huge muscular shoulders are bony and small. This happened so fast! He goes off and on the chemo when he can't take the side effects so to me that means the cancer is winning, but at the same time I know he just can't take it anymore and wants to feel better for a spell. Then he goes back on and the cycle repeats. He's back on again and taking his pain meds, which make him so loopy and loaded acting. I get upset at this, I don't know why. He's changing into another person. Where is he going?

Had such a bad day yesterday, breaking down again at work in front of a coworker who was only trying to be nice. You can't be nice to me without me crying. You can't ask me how he's doing, or I'll fall apart.

He wants to start going to church. I've been conflicted about church my whole adult life, but this is what he wants so we will go. And we will study scripture if that's what he wants. I'm just going along with anything he needs to feel better. I hope it gives him comfort...but I feel like a major hypocrite.

the doc says to give himself "quality of life" and go off the chemo now and then, but it's more off than on, and he's shrinking and acting like someone else most of the time. I don't know what to do. I just sit there and look at him changing in front of me. I want Rocky back! he's leaving me a little at a time and I don't think we have a lot of time. This is killing me. I just want to go with him.

At 5:34pm on May 29, 2015, Richard G said…

You're welcome. We all need friends here. I haven't worked up the energy to put in the garden yet. I'm still really struggling to get through most days. I have grape jelly out for the Orioles and I have quite a few Baltimore Orioles and a couple of Orchard Orioles that come to the jelly. I also have two huge bird feeders and two suet feeders. I get a good variety of birds at my feeders. They bring a little bit of joy into my existence. 

At 4:54pm on May 23, 2015, Richard G said…

Fran, I am happy that you find hope in my story. I personally wonder if I will ever be able to love again. I know that I have a lot of love to give but I'm so afraid of going through this again. I find myself grieving for both of my spouses. Hospice says that is typically the case when someone loses another spouse. I just try to get a few moments peace each day. I think those fleeting moments of peace are what keep me sane. I wish you all the best.

At 9:19am on April 29, 2015, kathleen akin said…

Hi Fran. I think I'm handling things better. I still cannot talk about this without breaking out in tears so I just tell people that I can't talk about it, while I'm crying, and they get the point. But at the same time I think I need to talk about it. I'm so scared to death of being without him. I cannot express how afraid. How will I live? Will I have to move? And to where? We have no money, no life insurance and are now racking up hospital bills from his illness and my own. I feel like the 2 of us are such a mess...

He is starting to be in pain, from the chemo I think, even though the doctors are saying it's working as far as not letting the cancer spread like it was before. Not that anything is being cured, there is not cure. There really is no hope. What do you do when there is no hope??? I feel like at this rate, with the way he looks, acts and even his voice, that he will not be here next year and what will that look like for me? I don't even want to know. He has always been my strong care-taker. Now I am trying to take care of him and I feel worthless because I can't fix his pain.

Life is going on all around me and I don't enjoy it. My daughter is getting married in August and my husband's illness is taking the joy out of it for me. And her I think. She is worried, but hopeful. I don't try to take that from her, I get that she doesn't understand the full situation. there is no hope. None. So why am I here? Why should I be here when he is gone? I don't see the point. I keep going over that in my mind and can't get away from it for even a moment.

At 9:39am on April 16, 2015, kathleen akin said…

Not dealing very well this week. I can't stand to see him struggle so hard every day to go to work to earn money we need. When he is sick. And there is nothing I can do about it. He is in pain, he looks like what is happening...he is dying right in front of me. None of his stupid local Drs. saw anything wrong, didn't WANT to see anything wrong for years. When all along if they had just googled "liver cancer symptoms" it's the first thing that pops up. He has ALL of them! They are Drs.. they are useless.  I think they wrote him off because 26 years ago he was a drug user and they remember him from them. He got clean all those years ago and turned his life around, but they seem to only remember 26 years ago and him from then. So this is what happens.

Sorry, I'm ranting. I'm just so mad! And sad...I'm losing him, he is slowing fading away. I can't hold him enough, or tell him enough that I love him. I can't say "its gonna be ok" because its not. I tell him "I will see you on the other side" but will I? I don't know. My life is starting to wind down and will end when his does.

At 8:51pm on April 12, 2015, kathleen akin said…
not so good. I can forget as long as I don't look at him he looks terrible. He looks like my dad who I know won't be around much longer as he is 85 but in some ways he looks worse. He looks sick. My dad doesn't look in pain or sick. He won't make it to six months but I need him to I'm not ready. I don't know what I'm gonna do.
At 8:10pm on April 9, 2015, Debbie said…
Oh, Fran... Im sorry to hear about your loss - you are right, the grief is the same. I feel for you and your children and hope your healing has begun. Thank you for sharing.
At 10:53am on April 7, 2015, kathleen akin said…

We are going in to see a neurologist at Huntsman on Thursday since along with everything else my husband, Rocky, has developed Drop Foot. It's paralyzed. He feels nothing below the knee and it's very hard to walk so he can't work. He thinks he would be "ok" if it weren't for that. I'm getting so very frustrated and it's so hard to get in to see any Dr very quickly and they are dragging their feet like we have all the time in the world!

We had a lazy 4 day weekend and just lay in bed together watching endless TV and holding hands and just being together. I don't know what else to do.

My boss is giving me grief over having to go to these appointments with Rocky. He can't drive the 3 hour trip to the Hunstman! Why are people so sympathetic and "anything I can do for you just let me know...."  That didn't last long! And I didn't even ask anything other than let me go with him.

I hope they can figure out something with his foot and also get moving on the tumors on his adrenal glands that hurt him so much. He is such a mess and I hate that he has to continue to go to work...I don't make much money myself..I feel like if I did he could just quit. Disability is slow to move on anything, Medicare is slow, Drs are slow, labs and CT Scans are slow on results, takes forever to get an appointment. Don't you know my husband is in pain and dying???

At 9:51am on April 2, 2015, kathleen akin said…

I felt so upset and mad yesterday, I'm hoping I can make it through one day at work and not fall apart. People only have just so much sympathy. My husband suggested he come up and visit me so they can see for themselves what he looks like now and they can get the picture how real this is. I don't know. I don't want them looking and being curious as to what a dying person looks like. And that is what he is since they really don't have much in the way of a treatment for him at this point. They were supposed to radiate his liver tumor but the "target" was too small. What ever that means. So now on to the adrenal glands? I took time off for the liver stuff and I'm going to keep that time cuz I just want to be with him.

I find myself following him around at home...what ever room he is in that is where I want to be. I am at work now and I feel the panic rising in my throat. What is that?

Im mad at God also. I feel like he/she isn't even out there but then at the same time I'm begging God for help, for more time. I keep thinking if I just had a bit more time!!! And why not? It's a small request. But then if I don't feel like anyone is listening I might as well be talking and begging to the wall, right?

I don't fear death. I've been bipolar for my entire life, seeing and hearing things, and have suicide idealization along with it too. It just come with the package. I don't want to be around if my husband is not here. I want to be the one to die or at least be dead too. What will my kids think? Should I care? They don't have much to do with me so I don't know why they should care.

I'm saddened after reading everyone's experiences. It's like what is the point? And why these people? If there is a lesson to be learned, take out the bad people. I think we would all get that lesson.

At 5:12am on March 30, 2015, Maureen said…

My husband has had some health issues. He just finished treatment for bladder cancer in November and he was cancer free, but with his high blood pressure and previous heart problems I guess his body couldn't hold up to the stress. He had a heart attack at home and with the loss of oxygen to his brain there was no hope. I had to take him off life support the next morning. I think I am still in shock, which sounds strange even to me considering his battles. It just seems so sudden

At 4:29pm on February 22, 2015, Anita Jeffery said…

Fran, I just read through a bit of your profile.  Your feelings and reactions seem so similar to mine.  Our "journey" was also similar.  Husbands that in their own wonderful, selfless way wanted us to go on and live our lives and have enough to be comfortable.  Unfortunately, like you I feel that I would much rather have my husband here.  I can't imagine finding any happiness in my life...maybe moments now and then, but like you also when I feel any little bit of happiness or normalcy, I immediately feel guilty because my husband went through SO much.  I often wish I had been the one to be sick.  Sometimes it just seems that I am nothing without him.  There is a huge part of me that is simply gone now.  I try to focus on the fact that I am a person with something to offer in life.  I have done volunteer work, and in fact was volunteering until my husband became sick.  When you volunteer, it makes you see (depending on what you do), that no matter how awful you have it, there are always others who have it worse.  I try to imagine the beautiful children that are ill at the Children's Hosp. where I volunteered.  All of you who are nurses have a lot to offer.  It's not something you have to do every day, just once a week, or whatever you choose.  You still have a purpose in life no matter who you are.  I only have one son, and he is grown, but he would be devastated if something happened to me.  Remember that there are always people out there that would be hurt if YOU weren't there.

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