Patty65

Oh can't you turn those off?? I keep getting those too and they just ruin me. Of course, of course you hate it. I just researched how to turn that off... http://www.gadgette.com/2015/10/15/how-to-turn-off-facebook-memories/

I was told once long ago - actually by the same therapist I am back with now - that it is easier to feel guilty and blame ourselves than it is to accept the reality that such horrible things are out there and were/are so out of our control, so life-altering. Feeling that ultimate helplessness, she said, is harder than blaming ourselves. That these things can just happen. Anytime, anywhere. I haven't even come close to mastering forgiveness of myself. The reality of being so out of control must still be too strong. Patty

Dear Marg, I have not been here much since the day after I posted this. One bad thing after another. I'm still counting weeks, every Tuesday. We just passed 7. Coming up on 2 months, and May 11th is the day we opened our store a year ago. Don't know how I will survive that. But I wanted to know that I will be thinking of you on Sunday. Patty

praying you come up with something too kayc... from getting to know you here even in this short time, i truly believe the answer will come. thank you for the hug, very seriously, i needed it and it helped so much even virtually. maybe someday i'll cry less, but 'better' no. im not good at alone, im not good at taking care of myself. i'm good at taking care of my family which ironically meant i had to take care of myself too. before i met ron, i couldn't imagine true happiness. and then i had it. and now its gone again. like the awakenings movie.

so alone, need someplace to connect. it's week 7 and its only getting worse. i have to run the business, or i lose it, and everything, and the us that started it, it seems. having to do ron's job now, i have to deliver to the area of the island, the west side, that is one big long cliff drive with hotels on the other side. hotels we stayed in all the time, the hotel we first stayed in when we met. our getaway. now i have to deliver pasta there every triday. driving out, i have a knot in my throat. i go and deliver to people who give me their condolences and ask how i am. i barely make it out of the last delivery without tears, and on the drive home i'm - every time - sobbing uncontrollably on a dangerous road, and wanting to drive off the cliffs. today was the worst. during the last week that ron was in hospice, my car, my delivery vehicle and personal car, was stolen from in front of hospice. i was more than devastated, it was my respite between hospice and work, my safe place. it was found the day before he died. But there was so much damage that almost 8 weeks later it is finally ready today. i could barely already go a few minutes without crying (at work) and the car just drove me to a new level of (???) misery i dont know. when i saw it, it was not my respite. it was all those memories of the final days, the racing back and forth, the him who was still here. i don't want it anymore. i don't want anything. i just don't know how to go on with all this pain and my eyes are just on fire but the tears and swelling just won't stop. thank you for listening.

Dear Polly, I'm glad you found this place. I just did a little over two weeks ago. You are not alone, but I know that's hard to hear, we are all so alone. But here, you are not alone. My story is yours too. I am 50, and my Ron went downhill neurologically... headaches at New Years, gone by February. Tumors in his brain. Loss of cognitive functions, speaking, abilities. In Hospice 3 weeks, and with four rooms in our wing, there were 5 who lost the battle in that time frame, including my Ron. All we can do I guess is keep breathing, and reaching out. I had an all points bulletin out to my therapist and another close counselor friend at 5am this morning after sobbing through every minute of the night, all alone. We are holding on together. I haven't been through many "firsts" yet. I think you are so brave. Patty

I don't think you are crazy, I think it is natural. I know I'm tired of all the silence at home. I would venture to guess that it is very healing too During the first 2-3 weeks I thought "Have a good day" was the absolute most offensive thing anyone could say. Now I've adjusted to that and it is no longer offensive. And we have these learning disabled high schoolers who come in and help out with our business... they are so innocent, and happy, and give me such a big smile and say "Hi Patty!" that I automatically smile back and feel the warmth. In that one moment it feels better. Its not a smile of pity or sympathy or "knowing". It is just purely what it is. It makes sense to me that you enjoy it.

Im still at the first one. Thinking of the ways to do it. But I know I'd ruin my daughter's life, she's heading into her last year of college 5,000 miles away and needs me. Maybe by the time she graduates (can't bear to think of that of going without him) I will be at another stage of that, like you. I cant imagine but one long miserable year to find out.

The mornings are really hard as well. I was always up and out first too. If he stirred at all (most days) we'd kiss goodbye. And always say "I love you". And now its just wake up with the realization and this deep sinking in my chest. I still reach for him even though I've been clutching his pillow all night. And then the tears, especially on my drive to work. My eyes are permanently red and puffy with dark circles. I guess its the new me. When he was in Hospice and I'd come or go each day, I would kiss him goodbye, he would pucker his lips for my kiss, and I would say "I love you". But because the tumors were in his brain, he could not find the words to say "I love you too" back to me like he ALWAYS would. Except for one day. February 18 in the morning. 5 days before he was gone. He puckered up, gave me my kiss with his eyes still closed as I leaned down, and he said it. "I love you too." I'd been so so missing and waiting for that, and silently hoping and hurting so deeply to hear that again with every kiss goodbye. And I got it. One last time. I told everyone, I was so happy and hopeful that morning. I will always, always treasure that moment.

I think we have a free pass to "crazy" for the rest of our lives...

Dear JC, You are not being selfish to want him with you... there's just no way not to, it is such a brutal loss to bear. Patty

This was my first "holiday" even though I am spiritual rather than religiously celebrating it. I thought I would be ok, but on these holidays Ron would actually convince me to slow down and really take the day off and we would have so much fun. we'd find a resort and pretend we were tourist, or drive to the other side of the island. It is/was so brutal. Not a single soul called me. Its how "just us" we were. I worked like 16 hours alone, opening the store alone, closing alone -- I had told all staff we'd be closed. I sobbed anytime there was an empty store, which was a lot. Better than driving off a cliff, which was on my mind a lot, and even though I could never do that to our daughter, it didn't stop it, or all the images of him in the last days and minutes. it is ours alone and honestly, really really honestly, I don't know how many of you have survived as long as you have. You all are so strong.

hi cookie, i have been afraid i would encounter that or be that person... i could totally see the benefit of face to face... but a forum is much more comfortable as I write easier than I share face to face. i really really wonder too.

Oh wow, Marsha, thank you, I will figure that part of the site out soon and do that... it would really help to be able to be in touch about all that. It seems so so impossible right now. Any problem there I just break down, I need ron to talk to about it so so much. Even the victories.

I will definitely go to the blog and here and read her posts when I am able, but I do see what you mean. Yes, all of life's little grumbles with our spouses... such a challenge for my heart now. How stupid they were. They were not the higher reality of the love we shared. When Ron was in hospice a friend tried to remind me how stubborn and proud ron could be when he was stalling when the herbal remedies I had made for him, and that he was being too negative when half of fighting cancer is attitude. I bit her head off. Even though some of it was true, I could not and did not want to hear it. Or now. My therapist, whom I love dearly, said once recently "don't you remember how annoying ron could be in the jacuzzi when he would talk your ear off?" She said it with a laugh, and I forget what I had said to make her say that. But Out of all the loving, perfect, supportive things she is there for me for, including being by my side at the service, that still rings and hurts. Those things are so little. They don't matter. Those who heard my occasional grumbles, they weren't with us the rest of the time in the deepness of our relationship and love. And it is beyond words for sharing with friends.

Thank you Marty and Kayc. I will think a lot about what you said, Marty. The hospice he was at was 5 minutes from our business, and now I have to drive by the house (it was a hospice house) he died in on my way to work every day. Or, when doing other work errands, I drive by all the cross roads I took to get there and I get very anxious and shake. The counsellor, when she heard my "story" about the business falling apart and various things going wrong there on top of all of the time away from home living at hospice and watching others die, she just shook her head and smiled and said she didn't know what to say. The one thing she did was drive me to the business the morning my car was stolen from hospice. Shaking her head and saying basically my problems were too big for her -- oh I felt so hopeless. One of the first days there, a nurse mentioned in passing that they gave ron morphine because he had discomfort when they were changing him. How could I be his advocate if they don't tell me what they are doing? They told me they would consult me before meds, ron is so sensitive to them. The night before he passed, he was going downhill, and I didn't get there at lunch because my stolen car was found almost totalled, and I had to deal with it before I had to teach a 5 hour class. That stressed me because I was the only one who could feed him, get him to eat. They told me theday before they would talk to me before they were going to start any meds. But I got back there, they had given him more morphine because of his breathing. They promised to tell me first! They had JUST promised me the day before! The same nurse that said "he grabbed my arm and that is NOT OK we want to give him Haldol" a couple weeks before confronted me the night before he passed. (OMG ron was the gentlest soul, he would never be combative, and he wasn't I witnessed it) Right at the front door at 9:30pm after my class. Theres changes in ron, she said. I know. I said. I knew him more than intimately and I saw every minute change. She brought me to the family room and told me all the changes. I know I know I know. Fighting tears, I was not going to cry in front of HER. I just want to be with him I was thinking. Let me go. I just kept sayiing "OK" so she would let me go. She followed me in his room and pointed out the changes. Oh god, I know!! But just a few days before I had sat down with the house leader nurse, and I asked what to expect. He told me, compassionately, everything. He was responsive to my reactions to what he was saying. I actually didn't mean the process of dying, I meant how would they stay in contact with me as things got worse, but I wasn't clear and he told me things I needed to know very gently and caringly. In those last hours, what he told me helped so much. I am so so so grateful he was the one who was on duty when ron went. He really cared. He let me wash his body with them. And the doctor was wonderful and really listened too, but she was not around, she was doing all the home visits too. But anytime I needed, I could contact her. Maybe not many people live there so completely as I did, I was there 16 hours a day with two four hour breaks to work, but the trauma of seeing so many others pass away is haunting me. There were only 7 rooms there and the rooms were close with doors open mostly. They would come in walking and talking and they would deteriorate so quickly. Then they were gone, and we were next. And the laughter of the nurses from the living room all night long. I get it -- I worked in a hospital when I was young. I know that kind of heaviness they have to have that outlet. But the laughter hurt and made me feel so alone. Their motto is "It's all about Life". But its not. It's all about dying. It should be, "its all about loving" or something that was actually supposed to be happening. I would get massive bloody noses there. And high blood pressure which I've never had in my life. Again I hope I haven't said too much here. Afraid of losing this too I guess. But it just came out. Maybe one day I can tell them all this. I will consider it Marty, so they know to make it better for others. I will save what I wrote here. But I think I need to process this with my therapist one day soon first, since it is haunting me. A lot of this could be the grief. I have no perspective. Thanks for listening

Dear Sallie, Yes, I do. It's been a month for me today since my husband died and I'm reeling, and my anger -- if you can call it that, I don't do anger well -- is falling on Hospice. He was in in-patient hospice for 23 days. Half way through, he reached to push the nurses arm away because it hurt, her cleaning him. That was not ok behavior in their eyes, and they wanted to put him on Haldol because of it. I refused to let them, it was a big ordeal. I wrote a poem, this is a verse -- afraid to share the whole thing, its kind of intense... It was only me fighting with nurses in a strange land called Hospice Couldn’t they see he didn’t need antipsychotics? Couldn’t they see he was just frustrated and felt robbed by his body of even the simplest dignity? I know hospice - the concept -- what they do -- is good. But I also have to honor my feelings now. Not all doctors and nurses are the same. Witnessing the revolving door of death, waiting for our turn. It was horrid. Nobody in my life knows how horrid. They did in my case go to meds too quickly for us when they, and I, needed to pay more attention to how and why he was reacting to things there. The last day, one month ago today, they started with the morphine. They said it was small doses but I was in no shape to figure that out. They said the way he was breathing they thought he might be in pain. So they gave it to him, and his breathing was the same, but the doses kept coming. And I wonder. But I know it wouldn't have changed the outcome. I don't know if he could have lived a few days longer. And I know I don't know how to express the anger of the unfairness of Ron being gone so young and so soon, and I know hospice is getting the brunt of it in my own head. There were some nurses that shouldn't have been there. But I also saw at the end that I could have never been able to provide what he needed on my own, and I was not eligible for home hospice because I had nobody to care for him 24/7. And there were some really caring people there. But my therapist tells me I have a right to all those feelings. I can hate hospice right now. I shudder thinking about going near the place, and I feel guilty because everyone I've ever talked to, up until I saw your post, has only wonderful things to say about them. Thank you for helping me not feel alone, I've not talked about that outside of therapy, and even there, not so much yet.

i hope I am not posting too much. my support system is so minimal, one close friend, a therapist. the only face to face grief support is Hospice, and i have issues with hospice, i can't go back there. not yet, maybe not ever. one month ago i was with my honey. he was still alive, it was his vigil. i held his hand, waiting to feel it go cold, knowing it was coming. i stayed on the love-side not the despair-side every second i could. i played our favorite songs. i told him it was ok to let go. but to stay close. that i would look for him in orion's belt. he died while No Ordinary Love by Sade was playing. i want this nightmare to end. i want to wake up. i want to be with him. nothing nothing nothing about my life i want.

Here I am at the business. So numb and dead. But I so fear I am like that, that I'm betraying Ron. That I didn't love him enough to be so dead inside sometimes. Everyone tells me he wanted me to keep the business going, actually he told me. Before he even knew he was sick he said "If anything happens to me, you could run Maui Pasta by yourself". I was like, "No way". But when I go numb I so beat myself up. How do you keep the anger from building up at yourself? I just don't know. Patty

Thanks Kayc, They found the vehicle the day before Ron died. I no longer cared. But I do want it back -- I am driving Ron's giant truck now, and there's so many memories I usually end up wherever I'm going in tears. My vehicle, with $3K of damage (covered by insurance), will be back in a few more weeks.

I so relate, Marg. A couple of weeks ago when it was I think the weekend after - a complete blur - I at least told my therapist that I had a lethal dose of oxycodone. She helped me flush them. I couldn't possibly do that to our daughter, but oh I wanted to. I don't want this path. Thank you, Patty

Dear Polly, I just posted for the first time today too. I know those moments in the middle of the night. How crazy and unpredictable it is doesn't even come close. My therapist tells me to just stay alive, that is all I have to do right now. I hope you feel the love and support here. I know I do. Because the Alone feels like it will suffocate me. Just sitting here looking at these pages, even if I can't read too much yet, helps me just stay alive. Patty

Hi Ana, I had to stop reading here in the day when I was at work. To keep the numb in place, but then it didn't work anyway. Today two employees decided to have a big argument. Ron always handled those for me, I was never good at that, so stressful, and I shut down. That was before he was gone Today I was literally trembling but I did manage to make it to the bathroom before sobbing. What was I thinking that I hoped to keep the business going?? I am so hard on myself too. I wonder if others turn the anger part of grief inward at themselves. I feel it so so strongly, from everything I did to everything I'm doing. Patty

Thank you everyone, and Kevin... boy those are tough ones... nutrition and rest. I can't seem to do either of those things. The only saving grace is that we own a food business. Or I do I guess :,( and my staff keeps "asking" me to taste things cus they know I'm struggling and haven't been eating. So I have a few bites a day. And a friend who is relentless about making sure I have water. Patty

Thank you Ana, Yes, one minute, sometimes one second at a time. I do feel the caring here. I'm glad you are near family now, I thought being with my family for a week would be hard, but it wasn't and it was so hard to see them go. Was it hard to leave your place? I may have to. Patty