Old 05-14-2018, 01:17 AM #1 (permalink)
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Default What now?

Just rambling. Today was 3 weeks since Ferd died. I've been trying to get the thank you cards done and have been in tears all weekend. I got the online stuff finished but the cards are still waiting, Not sure what it is about them that is so hard but... Getting his things together and doing the disbursement wasn't this hard. I didn't keep many things. It's funny how little they had any connection for me to him.

His family has been great, surprisingly supportive. it's strange being their substitute Ferd. the last tie to their brother but it has been comforting hearing them reminisce.

The service was beautiful. Friends sang. I got a couple of audio clips of him singing and they had video of him singing and dancing. It was so overwhelming. I hadn't heard him sing since he was diagnosed. The closing hymn was Hallelujah. Ferd sang it all the time. one of our old roommates asked me if I had done that on purpose. when I asked why he reminded me Ferd used to change the lyrics to how peculiar. We shared a smile, it seemed oddly fitting,

nothing fits anymore. life feels like a million jagged little pieces that cut every time you pick one up and try and put it in place. I can't sleep. every time I close my eyes I replay that last half an hour. I was beside him holding his hand. He was so still when he slept I used to but my hand on his belly to make sure he was still breathing, He'd let out a big sigh and everything would be fine. Except no sigh this time. I hit the call button and started to cry. told them I didn't think he was breathing. lots of people came rushing in. the nurse said he had a pulse. I said he's okay then? and she told me he had maybe 1/2 an hour left. I sat there holding his hand, crying. I told him I loved him, I would miss him but I understood he had to go. Everyone kept saying he had such a peaceful passing and i kept thinking how in the world was that peaceful. I was talking to a friend about it, telling her how it haunted me and she said that must have been awful for you. that rollercoaster thinking he was gone then okay then he really was gone. that's when I realised it wasn't peaceful for me but it probably was for him. it's taken a bit of the sting out of it.

hearing he's in a better place, that he isn't suffering anymore is no comfort at all.

everyone keeps telling me it's okay to feel guilty that i'm alive and he's not. I tried to explain that I don't feel guilty for that. it's not like we were in a car accident and he died and I lived. I feel guilty that he died. Somehow I failed him. I missed something, we should have gone ahead with the PEG, I should have been smarter, tried harder. My whole focus for almost 6 years has been keeping him alive and he's not. It doesn't matter that there was no other way this was going to end, that it was an impossible task. I know that, it doesn't seem that my mind and emotions are on the same page anymore.

I don't understand why everyone thinks I should be angry at him for dying. that it's okay if I feel that way but odd if I don't. I explained to the grief counsellor I knew what it cost Ferd to be here with me. i was there through the pain, through the spasms in his throat that were so bad he was coughing up blood, not eating for 27 days. He didn't leave by choice. I'm not angry at the universe for taking him from me, I was loved and loved in return. some people never ever experience that. being angry it wasn't as long as i would have liked feels like it diminishes that somehow. like it was only true if it lasted longer. kind of like if I can't have the whole cake, I won't enjoy this piece in front of me. i don't know.

I always knew there would be a price to pay. that being Ferd's caregiver would catch up with me eventually. you can't push that hard that long. now that this part is done, it feels kind of like a train wreck. that first car stops and every other one crashes into it. Now I have to deal with the whole train, not just the car in front of me.

I knew I would be sad, crazy unbelievably sad. I didn't expect pain. gut wrenching, can barely breathe pain. It's like my whole body contracts. I've been having pretty bad anxiety episodes. apparently fairly standard. another mind and body not in sync thing.

Every step i try and take forward feels like I am abandoning Ferd some how. like moving on means I have to forget him. I know that's not the case, but that's how it feels. I understand the appeal of staying here, of looking forever back. I don't want to stay here but I may just linger a while. sit grief at the table for a bit then send it on it's way when I'm ready. I know the reason I'm in pain is because i loved him. the idea he is now my past, it's hard to reconcile. the other side of that is that I know what it feels like to be loved and I want to feel that again. Maybe one day, maybe not.

It's funny, I thought that I would be relinquishing my crown. no more prince of persistence, somehow that ended when I was no longer Ferd's caregiver. I think I may need every bit of that to move forward and rediscover what my life looks like after him.

Paul

--oOOo--

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Old 05-14-2018, 02:19 AM #2 (permalink)
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Default Re: What now?

Paul,

You are right, you will be needing your crown straight through. Remember that moving forward is not the same as moving on, if he is with you, which I know he is. Hold that presence against you, against the unfounded guilt over his death. He would not, did not, could not blame you.

But it will take time to forgive yourself. Don't try to sleep, just sleep. Don't try to do, just be. No one expects/needs their cards this second. If you are disabled by panic, your doc can write an rx.

You spent six years digging in -- it will take more than three weeks to dig out. Just don't forget which way the light is.

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Old 05-14-2018, 02:25 AM #3 (permalink)
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Default Re: What now?

I've been thinking of you a lot.

There is no correct time, way or system to grieve. You and Ferd were a unique couple, your time through ALS was your own, and your grief will reflect all of that. Don't let anyone tell you what you should or shouldn't feel or whatever, except me with what I just said.

I'm sorry mate, but you will not feel better in another few days or weeks, this is a deep as it gets. We are here xxx
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Old 05-14-2018, 02:59 PM #4 (permalink)
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Default Re: What now?

Paul, we're all different with different reactions to our different experiences. I have no words that could possibly comfort you. But we're here for you. You don't have to go away.
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Old 05-14-2018, 03:06 PM #5 (permalink)
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Default Re: What now?

Paul, I Have not yet been in your shoes, so no comments from me on shoulds or shouldn’ts, just pure support. My shoulder is still here for you and I’d still love to give you that hug and hold you up as you process. Know I’m here for you, praying for peace and comfort.

Hugs,

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Old 05-14-2018, 04:29 PM #6 (permalink)
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Default Re: What now?

Thank you for rambling here. Your mind seems quite alright and you already know that it'll take time to let your emotions catch up. I wish you more people like Ferd's family and all the time in the world.
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Old 05-18-2018, 05:00 PM #7 (permalink)
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Default Re: What now?

Paul, I am so sorry that you must go through this pain. It sounds like you have loving, supportive people to help you, and that is good.

Thank you for the care you provided for Ferd, and for all the countless acts of loving kindness you performed for him. You helped him so much, maybe in ways that only other CALS and PALS can appreciate.

God bless.
Bill
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Old 05-22-2018, 12:45 AM #8 (permalink)
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Default Re: What now?

Paul, you articulate your feelings and loss so well. It is heartbreaking to read your feelings, but yet I am so glad you can come here to "talk" about your pain and loss. Your words are so raw that they are poetic. We are all here to help you in whatever way possible. Love to you Paul.
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Old 05-24-2018, 12:56 PM #9 (permalink)
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How are you Paul ?
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Old 05-24-2018, 08:14 PM #10 (permalink)
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Thinking of you.
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Old 05-28-2018, 06:48 PM #11 (permalink)
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Default Re: What now?

Hi Paul,

Been thinking of you a lot lately. Sending hugs and prayers for peace and hoping you are doing OK for where you are right now.

Hugs,

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