Old 08-26-2018, 01:02 AM #1 (permalink)
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Default What now? part 2

It's late, can't sleep. Just rambing, trying to put some thoughts in order.

I can't believe it's been 4 months since Ferd died. It feels like I haven't seen him in forever, like it's been so much longer. And then I think it's only been 4 months, that's why this still feels so raw.

I'm back at work. I thought that would be different, help get me back into a routine. Truth is it feels pretty much the same. I juggled working and caring for Ferd for years.

Being at home is okay. I don't expect to see him here. We never really got a chance to settle into the new house. Never bought new furniture or choose paint colours or anything. Instead carpet got torn up so he could use the walker and wheelchair, got rid of furniture to make room for equipment. I think him being in the LTC facility for so long makes it a little easier to be here alone now. It's funny, I don't think of it as home, it's my house. Home was Ferd, wherever he was.

Truth be told I feel a little rootless right now. No strong connection to anything. I've been home to see my family. that's been good and strange at the same time. So much has changed, I'm out of step with everyone. But there have been moments where things have been great. Where it just feels good, my first thought isn't I wish Ferd was here. it might be my second but for a little while it feels like something inside has unclenched. Like I can breathe.

People talk about grief and healing, kind of like getting over the flu or a cold. I think it's more like an amputation. At first it's overwhelming but over time you make a million little adjustments until life goes on as it always did. Then you hit it in just the right spot and all of a sudden you get that searing moment of loss and pain. It may pass quickly or slowly but it does pass and you're reminded there is a part of you missing that you used to have.

There will always be a part of me that will mourn Ferd, the loss of our life together. The what might have been. But I think that's okay. It just adds another layer to life. It doesn't mean I can't go on and live my life to the fullest whatever that means.

It's hard coming back to the forum, reading about others who have lost their PALS, hearing of other CALS still struggling. It brings back a flood of memories, some good, mostly not. It's been hard dealing with what our journey through ALS was.

When Ferd was sick, it seemed like there was always 10 things that needed to be taken care of yesterday. there was no time to try and process what was happening to the both of us. Now that I'm on the other side of this, trying to get a handle on how I feel, I'm struggling. Not just dealing with his death but the last 6 years. Being lonely isn't a new feeling for me. I hated that Ferd was away from me but I never thought of how lonely he must have been too. He was surrounded by people all the time taking care of him and I was always so busy with everything else i don't think I ever thought of him as being lonely. Stuff like that trips me up, gets me down. There are lots of things that just got pushed to the side, to be dealt with at some future date, Now it's that future date facing the horror of what we went through. That sounds a little dramatic I suppose but I can't think of another word that really captures what ALS is like.

Nights are still the worst. I keep feeling like I should be somewhere else. Like I'm waiting for something. I almost expect to get a phone call from the facility asking where I am, when I'll be there,

Been eating a lot of take out food. Ferd and I had such a strong connection over food, We both liked to cook and eat. Cooking for myself and by myself is a bit depressing. Can't say I miss the clean up though. I'll get back to it in time.

It's a lot harder than I thought breaking my routine of the last few years. Still eating really late a night, cramming everything into the few free hours I used to have on Saturday. I really have to stop myself from saying no, I don't have time for that.

All in all, I feel like a spring that is slowly unwinding after being wound as tight as it could be. I guess that's progress, right?

Thanks for listening

Paul

--oOOo--

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Old 08-26-2018, 03:10 AM #2 (permalink)
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Default Re: What now? part 2

Hi, Paul,

You're right, the part of yourself that is in mourning is always going to be, well, part of you.

And there is no going back in time. You loved -- love -- Ferd and don't regret meeting him, living with him, so you can't really regret, at root, that you loved someone with ALS. He didn't choose that, nor did you.

Nor can you regret what didn't happen, because that is down to a disease. And there are always moments of regret for when one or both of you wasn't at your best, even with relationships that are stress-tested far less arduously.

So what is progress after a PALS dies? I think it's forward or sideways steps toward being the best self that s/he would want you to be, and/or that you want to be, without the constraint of uncontrolled grief, apathy, anger.

At four months in, that you can say what you have, I think is progress indeed. Many of us are still working on our progress years past where you are now. There will be setbacks in that progress (currently attacking the dreaded boxes of papers/memories again, I'm definitely in one). But as long as you're facing the right direction, it's all good.

Best,
Laurie

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Old 08-26-2018, 09:05 AM #3 (permalink)
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Default Re: What now? part 2

Paul - I am so glad you checked in. I think of you often and wonder how you are doing. I’m happy to hear you feel as though you have progressed a bit. Please know I am still holding you up across the miles. Be gentle with yourself. Something you can remind me when my turn comes.

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Old 08-26-2018, 12:30 PM #4 (permalink)
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Default Re: What now? part 2

Good to hear from you, Paul.


You wrote all the same things I felt.


You're on the right road, believe it or not, to happiness again.


It takes time. But there is a new life coming toward you now. Ferd will always be with you, but the pain recedes and the happy memories remain.
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Old 09-06-2018, 06:54 PM #5 (permalink)
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Default Re: What now? part 2

Thank you for checking in and sorting your thoughts for all to read along, Paul!
Had to chuckle about not cooking. I had to reteach myself cooking when my boyfriend stopped to eat by mouth. Now he's gone and I'm hardly home (just like when he used to be away for a day or a week, what's the point of going home if he's not there, right?) to cook anyway but I'll have to reteach myself to shop for groceries and prepare meals or I will go bankrupt eating out once the pity is no longer my meal ticket with friends.
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Old 09-18-2018, 08:53 PM #6 (permalink)
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Default Re: What now? part 2

It's been a rough few days, Had dinner with a friend last week. She lost her husband about a year and a half before Ferd died. We had a great time catching up. She's been travelling all over. We talked a lot about grief and loss. It was comforting and distressing at the same time. Comforting that we could talk so openly and honestly about what we were both feeling, distressing that she was feeling much of what I am so strongly after almost 2 years.

We talked about finding joy, how it was different now. More of the esoteric, big picture rather than the everyday happiness. I told her about being at my parents and watching fireflies flickering in the fields around our house, there were hundreds of them. I thought, the world can't be such a bad place if I can be here watching this. I can't seem to find that feeling very often. Most days, the world feels pretty unfeeling and empty, a bit futile.

I feel like I'm in this inbetween place, just waiting. I couldn't tell you what I'm waiting for, just standing still.

Everybody keeps telling me I'll know when the time is right, when I'm ready. I'm not so sure that's right, at least for me. I'm having a hard time making any kind of decisions about anything. Like I'm waiting for some kind of sign that this is the right direction to be going. That's not me, sometimes I hardly recognize this "new" me. I'm normally fairly confident, a planner, always with a direction or goal in mind. Fairly happy go lucky, content and appreciative for what I have in life. These days, the world seems like it's painted in shades of grey. My therapist called it ego depletion, basically, exhaustion of the soul if you will. Said it will just take time. I put on a good face at work, I'm sure most people would be surprised how unhappy I've been, that I'm having trouble coping. I'm surprised how often I cry still. I'm not what anyone would call demonstrative, normally fairly reserved. A friend told me that was a great sign, that I wasn't hold things back. I told her it was making me dehydrated.

I think I'm going to have to start to push myself to discover what my life is going to look like rather than our life. I don't want to get stuck in this waiting place. I've got to shake this feeling that life from now on will somehow be less than.

A surprising number of people having been pushing me to start dating. I'm not ready for that. I'm looking for the comfort I felt with Ferd, not with someone else. the idea that I could feel that with someone else feels very foreign right now. To shut everyone up I did make a dating profile, just so I could tell people I had, that I was trying. There is nothing on it, just enough to say I did it. Maybe my life is like that right now, missing the details. Over time, I'll fill them in, flesh out the story until it's my story again. Until then I can still do my best Miss Havisham, wandering around this unchanged house, talking to Ferd. My own particular brand of comfort/crazy.

thanks for listening

Paul

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--oOOo--
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Old 09-19-2018, 11:33 AM #7 (permalink)
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Default Re: What now? part 2

Paul - I am once again sending you thoes huge hugs. I’m wondering if your Dr has suggested going on a medication for a little while?

I’ve had to go back on Celexa due to anxiety that sent me to the ER. I can tell you it’s been huge for me. I didn’t realize how far down I had fallen. I realize it’s not the same, but it may help pull you a bit out of the funk so you can finally think about what direction you may want to take. Take away some of the gray, and get you a bit unstuck.

My heart and thoughts go out to you. Be gentle with yourself.

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Old 09-19-2018, 06:36 PM #8 (permalink)
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Default Re: What now? part 2

I completely understand how you feel. The majority of your post could have been me writing it.

For the first time in my life, I feel unsure of myself. I have so may insecurities showing up that I am not used to. I feel empty...

I am trying to find some friends to do things with. Things that I used to enjoy with Cliff, like concerts. I bought some tickets today for a Dec 1st show. I have gone to a couple with my mom and sister but I feel like it's not the right mix for that.

I have started reading from books from Alan Wolfelt. It is helping me understand that what I am feeling is completely normal.

I am also discouraged when I hear others say that they feel the same way we do after a few years. Remember though, everyone's grief is different. I am hoping we fare better...

I can say I am not even close to thinking about dating. It's been 9 months for me. Not sure when or if that will ever happen.

You do you... Maybe try to find some things that you enjoy doing?! Maybe find a friend or two to do those things with?!

I hope we both find less emptiness ahead! Hugs!
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Old 09-30-2018, 10:56 PM #9 (permalink)
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Default Re: What now? part 2

Things have been better the last little while. Haven't really done anything, just feel better.

Sue, general consensus from everyone is that I am doing fine, doctor, therapist, counselor. All I need is time, they'd be more worried if I felt nothing. I understand what they are saying but I can't say i am enjoying the sadness. Not that it's crushing,I never went through the can't face the day or staying in bed all day depression. I'm just normally fairly happy go lucky, pretty content with life. Not so much these days but I think that's okay too. I'll figure it out eventually.

I was talking with my new boss, she lost her mother and uncle earlier this year. she was saying how hard it had been but she couldn't imagine how different it must be for me. I thought about it and told her, loss is loss. What's different between us is, at the end of the day, she goes home to her daughter and husband. it's tough but the world still seems like not such a bad place. I go home to an empty house. It's a lot harder to find that feeling alone. I'll get there eventually, but I'm missing that person who had my back. the one i could depend on for comfort.

She also talked about visiting a psychic who told her things about her mother and uncle. She said it was very comforting. It got me agitated and she asked why. i didn't have an answer but it stuck with me. The thought that Ferd is hanging around, that he isn't at peace really bothered me. I don't even really believe in that kind of stuff. If anyone deserves whatever peace comes next, it's someone who has suffered through ALS. I have only dreamt of Ferd once, more nightmare than dream but in an odd way I find it comforting. We said everything that needed to be said. there was nothing unfinished between us. He can move on in peace. Yes I have watched every horror movie ever made.

It's kind of strange, I have no doubt in my mind that Ferd loved me. Never ever questioned it. When I talk to Ferd, as I do sometimes still , I always tell him I hope he knows how much I miss him, I hope he knows how much I loved him. I have no idea why that sticks with me, that he may have died not knowing that. It's not like I never told him, it's not like I abandoned him when he went into care. We even had the conversation, you're stuck with me come what may, I'll be here. And I was. Don't know what that is about.

Making decisions, still in a bit of a spot with that. i bought a fixer upper. when Ferd was sick there was no time or money to do anything. it was supposed to be our home. Now that I have time, I have no idea what I want to do with it, how to remodel. The idea was never to be here by myself. I also find, I don't really care what the house looks like. My mother is more excited about the prospect of renovating than I am. I will not be giving her free rein, she has excellent taste but it is not mine. Because I'm not so enthusiastic about it, I haven't done anything. I keep thinking this sort of apathy is part of grieving and it will pass.

Work is okay but I'm surprised how stressful it is all on it's own. I always thought it was because I was juggling it and Ferd. I'm finding I kind of resent the long hours, the pressure. But again, is this the job or just part of the grieving process. I don't know and I don't want to make any rash decisions.

It is very confusing and frustrating second guessing myself like this. I'm usually pretty decisive. I guess only time will tell.

Sooner, I am doing me. That means a fair bit of alone time to try and get my thoughts in order. It surprised me I don't find a lot of comfort in being with friends or family right now. It's nice when we get together but not something I want too much of for the time being. I know part of that is I'm tired of hearing people talk about how I can get my life back on track, Like it was on pause for the last 6 years and I can just step back in where I left off. It always feels like I have to justify wanting to spend the time with Ferd, or that I didn't put my life hold, I was doing exactly what I wanted and was where I wanted to be. I haven't been released from anything.

The adjustment from us to me is also tough. Single me in my 30's is very different from single me in my 50's. I'm in a place I never thought I would be with no guide to get me through. It surprises me how different I feel not having that one special person in my life. More unsure of myself, less confident. It feels like life threw me this enormous curve. I went through this incredible experience, learned all these lessons but the person who I want to share it with is the one who is gone.

Oh well, I guess only time will tell. I guess the final lesson is patience. Not just with others but with yourself too.

thanks for listening

Paul

--oOOo--

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Old 10-01-2018, 05:33 AM #10 (permalink)
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Default Re: What now? part 2

Thanks for writing. It's good you put your feelings into words. I'm better at getting distracted by friends but in the last days I slowed down my social calendar and the void trickles in. Your post made me tear up a little in the subway. Guess after almost two month of happy-go-lucky shenanigans it's time to pause with Paul.
Time and patience, you're doing everything right, your schedule is the only one that matters.
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Old 10-01-2018, 06:31 PM #11 (permalink)
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Default Re: What now? part 2

Paul I am so glad you are doing what feels right for Paul. Know that I am always here holding you like I am for every CAL here. Someday some of us may meet, I think I’d like that.

Hugs and peace to you as you navigate this new journey.
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