The Next Part of the Journey

MVFinVA

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Lenore,
I so hope that whole "second year is worse" thing isn't true for us CALS! I think life with ALS was so bad, and we were mourning loses all along the path, that it is hard to dream it could be worse. I know that for Dave, because of the FTD, I had lost "him" before there was an official diagnosis. The mourning began at the first mention of ALS as a possibility. So I am planning on the second year NOT being as bad as the first.

Glad to hear about the new job! Look forward to hearing about it:)

Mary
 

Lkaibel

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Getting use to the hectic pace of the new job and loving my new team. It’s good to be back at it.

I miss Brian so very much but I’m learning to sustain and maintain under that enormous loss. There is a theory that the graver the loss, the better you might just come through it. The death of a loved one always hurts. The death of someone who helped to define your very identity is a crisis that demands attention and action to survive it.

With work, friends, great animals ( the fur tribe/ family) and interests I have a full life. I don’t know if I can ever have another relationship, or if I will stay in this house beyond next year. I have this feeling moving would either be a great or a terrible choice, nothing in between. I’d like to find a way to give it a test run, rent another place for six months but I have too many animals!

Relationships, well it’s six months out, way too soon. I just think I can never get involved again. So many things. What if gawdfervib I ended up with another seriously ill partner? What if I ended up being a seriously ill partner? I hate both thoughts! I can never have another last name, that’s a given. So many issues.

Anyway, climbing out of the abyss. I know I’ll slide in again and back up and out as time goes on. It helps to not fear pain. It just IS, the grief. Stop trying to stop it and let it wash over and through you I say.
 

soonerwife

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So glad you have a team you are loving... work can be so good and sometimes so bad.

I have to say a new relationship enters my mind sometimes probably just because I'm not in one but honestly, I can't imagine being with someone else. Only time will tell how that works out.

For now, I am just spending time with family. Thank god, I have lot's of wonderful family.
 

Narrowminded

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So happy for you with your new position at work. Sounds wonderful.

I hear you on the house thing. I feel the same way.

Same with the the idea of another relationship. Really too soon to tell, but have the same fears as you. I was talking today with a very good friend I made through our ALS support weekend. She lost her husband the beginning of last Nov and I the end. She said the same thing about relationships as well.

Have an amazing weekend.
 

Lkaibel

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So two weeks from tomorrow I’m going to the ALSA Gala. I’m dragging a friend along. I hope I’ll not be too much of a blubbering mess with the tearjerker videos (mandatory at non profit fundraising galas! I use to go to one for my last employer yearly). I just felt a need to go.

I am liking being busy and having my mind so occupied. I have times that when I get in the car for home it’s like the stopper for the tears has been pulled and here comes the waterworks. That’s okay, it’s part of it. Ride with the grief, don’t bury it or fight it I say...

I am also going to an appreciation service for anatomy bequest donors for the U of M in November. I gave a picture for the event for that of Brian.

To me, honoring is not a one day thing that happens at a funeral. Brian had no funeral, didn’t want one at all. Better for us to have a party celebrating him, better to have a light at the Gala to remember him and raise funds so we have no more PALS and CALS.

This whole thing has truly been the art of making peace with the unbeatable, and it is I think a life long journey. That’s okay. Most of us are living with things we have learned to sustain.
 

Lkaibel

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Opinion poll for PALS widows and widowers:

Were you/ did you feel sane and able to made reasonable decisions seven months after your loss? Am I fooling myself that I know what I am doing?

Brutally honest opinions are welcome.

It’s been 7 months today.
 
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lgelb

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7 months out, I was in a new contract job that I do not regret, but in month 5 had renewed a lease I really shouldn't have, because I wasn't ready to deal with moving. I think that was a reasonable decision, if not ideal, and I moved a year later.

I don't remember making any actually "bad" decisions at that time.

Is there a decision you are second-guessing, Lenore?

Best,
Laurie
 

affected

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I certainly would not have made any huge decisions unless I had no choice. (like if I could not have kept up mortgage payments I would have needed to make a call)
I did make decisions such as allowing myself to manically work in the garden instead of throw myself into work that earned me money I needed. I worked enough to keep my clients happy (I work for myself), and to cover at least some living expenses.
In the long run it has all worked out, and in some ways I was making decisions, but they were kind of holding pattern decisions which allowed me to grieve the way I needed to.
I did not make big decisions like suddenly selling, totally changing my life situation, giving up my business or anything.
I am now incredibly glad that I did not do anything big in those early years, but allowed myself to just grieve.

But everyone is different so it's really hard to say what is sanity.
I didn't really start to feel intense emotions in many ways until around 9 months after Chris passed. At first I was mostly just numb, relieved he was no longer suffering, and getting things in order, and gardening like a maniac.

Is there something you are struggling with wondering about so far as some decision?
Please feel free to message me privately if that would help in any way.
Or keep talking here - whatever we can do.
 

Narrowminded

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Lenore since I’m just a few months a head of you, I have not made any major decisions yet. I know I want to move, but I’ve been taking my time and haven’t seen anything yet that would make me pull the trigger. I will eventually, maybe in the spring, if nothing shows sooner. I’m 9 1/2 months out.

Being busy at work, like you, has had its benefits. And I too will feel that cork fly out on the way home or weird other times. You’re right, we just have to go through, whatever that may look like.

Hugging you from afar.
 

wishmobbing

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Were you/ did you feel sane and able to made reasonable decisions seven months after your loss? Am I fooling myself that I know what I am doing?
Yep.
Nope.
;)

Okay, more detail:
I didn't feel too traumatized as my run with the ALS Circus was a relatively short one. As far as I can think back I made decisions pretty quickly and seldom regret anything. So as long as I feel like myself I would feel sane enough.
You always impress me with being honest to yourself and reflecting this whole mess with a wider view. Probably that will never change as it's at the core of your personality. So if you decide to the best of your current state and that decision maybe feels like a bad call some years down the road, I know you will deal with that in a good manner. Like having some regret about the care of our PALS. We did what we were capable of at that time, no matter how it feels now or then. So I have no regrets about decisions back then and those where big decisions if ever I saw one.
 

soonerwife

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I think everyone is different for sure...

Starting at 6 months in, I sold my house and bought a house an hour away. It was a good decision, as I believe I would have had a much harder time in a somewhat isolating town. I am closer to work and to family. I don't regret it.

I have struggled with my job and am considering taking steps towards a new position at the same company or possibly even a new company.

It has been one year and 10 months...

The struggle is real, grief is no joke.
 

Lkaibel

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I did a lot these past seven months and I do not regret any of it. Changing jobs, taking time off. It was past time for that. Buying a car, not essential right at the moment and if I’d realized I was going to quit the job I would not have done it right then, but I love it and cant regret it. Refi on the house was needed just to put it in my name.

They were all big moves, but not leaving the state, selling a business type big moves. It’s just more activity than I’d had in a long while, thus it made me pause a bit and go “hmm hope I’ve made sense”. I think I have.
 

initforever

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It has been 10 months that my PALS earned his wings (just a little ahead of you). Not sure if the decisions I've made are "reasonable" to someone else but they have been reasonable to me at the time that I made them. Not moving in the foreseeable future as our home has more good memories than bad, refusing to look too far into the future as I'm still holding on to living and adjusting to the moments (it is the one and ONLY positive lesson I can say about being a CALS). As others have said take all the time you need as it is different for each of us. And that I feel has been the scary part; knowing that you don't have that "sounding board" to bounce decisions off.
 

Lkaibel

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I think at the moment I’m fine on the decisions part as I think about it, but man am I haunted.

I was getting into bed last night and the memory pops into my head of putting Brian’s last nightshirt on and washing him and putting lotion on him after he was no longer conscious and hospice had removed the catheter. I took some pains to restore him to his pre illness self in his last sleep. No diaper, no catheter, nightshirt instead of tee or sweat shirt, his familiar (girly, tee hee!) lotion on. I slipped his wedding band on the tip of his motionless hand under the blankets

I waited. I spend about 4 days pretty much in the house all the time and administered meds and waited. I stoped letting caregivers touch him about 48 hours beforehand, just did stuff myself. I wanted him back at the end.

The things that keep popping in my head. Wow.
 

Narrowminded

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Lenore i get it. The end is so hard and i too review the time. Not fun.
 
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