Time to reflect

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gooseberry

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10 months after Steve has died, we have made it through the holidays. Boy was it tough.

It has been very hard establishing this new life. Things I craved when Steve was with us and I felt guilty about, are slowly happening. It is hard to learn to sit and unwind your mind.

I have been having memory issues since a vacation in June. They feel it is the aftermath of caring for him and not something biological...more fatigue and stress.

All the doctors I have seen say to do what makes me happy. That is incredibly difficult because I no longer know what brings me joy.

For us, this has become a time of discovery, growth, and learning about our new selves. ALS has shaped us in different ways.
 

Atsugi

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The ALS experience made my kids and me into better, more responsible people.

I feared the first holiday after ALS so much that I took both my teen boys--and their girlfriends--to Europe two years in a row. There is no effing way I would go through a standard Christmas, tree, presents, etc, with Krissy gone.

This is the 5th year. I drafted the kids, now 19 + 21, plus their girlfriends, to decorate my tree and house. All was going fine until someone opened a box and a German Volkswanderung (hiking) medal fell out on the floor in front of me. It was Krissy's medal from when we met in Germany. I cried for an hour.

I agree that I don't know what makes me happy. So I got a woodshop and spend my days doing odd jobs around the house and yard. I'm existing. I tried to date but frankly, I'm not interested. My machinery no longer works--it quit exactly when Krissy died--I'm sure that's psychological. TMI?

But don't get the impression that my life is gloomy. My boys, their girls, and I go out weekly. When they leave college I'll be totally alone, though. I could sail, I could live in Europe, I could island hop. But the joy in those things--in anything--is in sharing it with someone.

Thanks for starting a reflections thread.
 

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I've been thinking about you this week Steph. I hope this thread stays just for past CALS to post into.

Thank you for your honesty. PTSD is very real and I believe all primary CALS suffer it in some form or another for some length of time. I called it 'widows brain' but really it was a PTSD reaction. No one of us can honestly say we didn't suffer severe stress watching the horror of ALS, so of course there is a reaction to that once the situation abruptly changes to being alone.

It's interesting that it is so rude when someone tells us what we should do or how we should be, and yet when we are told to do whatever makes us happy we just feel blank. I think it's partly because whatever made us happy before was a joint kind of thing, and now we have to find joy without sharing it with our other half.

I find a lot of joy in many things now, 2.5 years later, but the savour is often abruptly lost even still now, when I hit the hollow Chris-shaped hole in my life and can't share that joy with him.


I never thought much while a CALS about what would come after. To be honest I was too busy thinking about my PALS, and I couldn't even bear to think of life without Chris. But whatever little notions I did have in my head, were so far opposite to the reality of what it has been like that I am still a little stunned.

Mike I can't even imagine dating. As much as I hate the aloneness of no one to share the little and big things of life with, I just can't imagine meeting someone and starting anything off, let alone becoming intimate with someone. Maybe that's another part of PTSD, maybe not.

I was 47 when I met Chris. He asked me to take his hand and jump off the cliff with him, assuring me it was safe. It was so amazing, what a thrilling time! Then 5 years later he was dead. Just when it seemed life had turned for me, we had it all, we deserved it all, and it was ripped away.

OK, there is a lot to recover from still. People look at me and tell me I am amazing how I have come so far. I have come a very long way. But I am a widow, and am dealing daily with the grief of my loss.

Thanks Steph, I'm grateful for you here xx
 

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I'm 4 1/2 months into the loss of Bob & still feeling a lot of numbness and fatigue. I miss him terribly but the 24/7 caring was so incredibly physically and emotionally exhausting. I chose to do all his care myself but doubt I could have done it long term.

Like all of you we dreaded the holidays. We ended up doing them differently to make them more bearable. We have another hurdle coming up with Bob's life celebration in March.

I spend a lot of time with my grandchildren because they make me smile. A new grandson was born on November 5th so 2016 was bittersweet.

No dating for me. At my age most of the men will want to be taken care of, and that just plain isn't happening.

Many hugs to everyone of you.
Joan
 

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Oh Joan that reminds me of a very funny conversation with a friend recently.

She has become a good friend of mine, I met her when she came to work here caring for Chris.

So she tells me about this lovely man, a farmer with a great attitude and how he really just needs a good woman... you can guess where the conversation was heading...

Honestly we were both in tears of laughter by the end of the conversation as I'm ticking off all the reasons why she has totally gone insane if she thinks for one moment ...

1. Me an environmentalist with a cattle farmer?
2. Me with someone the age of my father?
3. Me with someone who already needs home care services to be able to live on his own????

Seriously though, you have hit a point - I truly wonder how I would cope finding myself in a carer situation again.
 

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Thank you for the laugh, Tillie.

Like you, just cannot do it again. I'm going to focus on taking care of myself.

Absolutely love what you do with the koala's. It looks awesome. Something like that is my daughters dream.

Hugs & love to you.
Joan
 

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In making the new shape of my life the regeneration of the habitat and work with the dying out koalas has obviously been a big part of that new shape. I'm loving it, and that is pretty obvious too.

But we still have that hole, that missing of the other half of ourselves.

I notice it so much when there is a joy. Like yesterday, I had a record six adult koalas on the property. I can't describe how it felt, such a victory, a reaping of benefits of what my regeneration work is producing.

Yet I got back to the empty house and realised that I would give anything to be able to share this with Chris. The excitement only last such a short time when you can't share it.

I phoned the care coordinator of the koala centre and squealed with delight to her and she was pleased and it was something, but still when I ended the call the feeling of emptiness that encases so many wonderful things was still there. Even having someone being happy for me, was not the same as sharing that victory and joy with your love.

This is what I can never truly explain to others. This is something that will never be solved, he will never come back.

It doesn't hit me like a tidal wave anymore, doesn't overwhelm me anymore. But it is still a part of my reality, like a wound that has left a tender scar that will be there for the rest of my life. So I walk with a limp. I am up on my feet and walking, but it will never be the same.

I would not say any of this to most people out there, because until you have lost your life partner, you just can't 'get it'. Definitely not the same as losing any other person in your life.
 

gooseberry

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Julien and I went to my sister's home for Christmas. It was nice being with family but hard also. Sometimes we felt like outsiders watching it all happening around us. It was surreal.

After the incident with Steves mom breaking her shoulder, I know I can not care for someone else.

Julien, my son, has decided we need an exercise plan and better food. So, we have embarked on a self improvement lifestyle. Healthier, whole foods and exercise.....sometimes it is yoga, sometimes pilates, or cardio. Whatever we feel like.

Mike I cant imagine dating. The stress of performance, feigning enjoyment, and expectations for sex leave me quite happy to have female friends I spend time with. I am quite intolerant of stress anymore and we do our best to minimize it.

This reaction...emotionally,physically, etc. seems to be common. Personally I dont think how long you provide care for this disease is as important but the horrors have the impact.
 

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Steph that is so exactly how I felt the first xmas!

I spent it with my son's partners family. They do their main thing xmas eve, and I had 3 of my 4 adult children there, but I felt so disconnected. Just like you said - like an outsider watching it.

The next year was harder in some ways because I really wanted the abnormal to stop but it hadn't.

Finally this year kids came here to me, and it felt the closest to normal.

The horrors do have a big impact. I believe we deserve whatever we need, on whatever time scale, to reach whatever place in life we find suits us.

No expectations from anyone else and I agree, reducing stress really helps as I am stronger in some ways, and still so much more vulnerable than ever in others.

I love how you and Julien are working together in your healing.
 

gooseberry

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Thanks Tillie! It is a funny thing but I realize just how strong I am physically but so fragile emotionally. The neuropsych that did my assessment said I had unreasonable expectations on what I thought my memory should be. I laughed....
 

KimT

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Steph,

I have to jump in here and just tell you how much I appreciate all you did for our chapter in donating Steve's equipment. It is all loaned out and I got back his chair while I wait for mine to arrive. I'm happy to hear Julien wants to do some healthy things. You're a good mom and the two of you will make happy memories again.

Mike, I really think Krissy was fortunate to have you as the love of her life. You and your boys should be proud of the care you gave her. They will be good husbands because of it.

Tillie, you've done so much for so many and made the world a better place for all.

I can't begin to express my gratitude for the CALS who stick here when it would be easier to just get on with life. You mean so much to me and other PALS.
 

gooseberry

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I really just wanted to help someone, Kim. It would have been a waste to not give the equipment to help others. I think all of us need the support and caring from people that understand. It is a sad thing that so many with this rotten disease can not get the help they truly need.
 

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Steph I think we often have unreasonable expectations on ourselves, and after ALS we actually want to 'bounce back' and take off running, but it just doesn't happen.

We can dream all these things, but the fact is that we to recover a lot. The physical recovery, unless a CALS is injured, is usually fairly straightforward and reasonably fast (say months). The emotional side is anything but straightforward and takes as long as it takes.

What I learned was to go with it. That was a big thing for me as I've always been one to just hitch up the big girl panties and keep going. Learning to say - "ok it's going to be a crap day and I'm not going to get these things done, so I'll just stop trying" - well that was a huge thing for me that I never even expected to need to do.

It is right to protect that emotional fragility, however you need to.
 

KatieNBoyd

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Thank you Goose for this post.

I feel just like I walked in to the warm cozy coffee shop where I recognize you all.

I had thought that I would be alright with the alone-ness since Jon slept so much. The doing things by myself while he was in the other room asleep would be the same after he was gone. It isn't.

The PTSD plays in my head more just as I go to bed. The visions of the last few days and the last few months. I actually saw a picture of Jon that I had taken just the day before he passed and I gasped because of how bad he did look. I guess we CALS were so use to being with them it was the norm for how our CALS looked.

I have gone through clothes. Going through files. Today I came across the folder he had kept of our letters back and forth from when we first met. Dating..I can not begin to think that there is another puzzle piece that fits in the space that is left now with Jon gone.

Mike I now have a full wood shop and Hailey and I re-did her desk. Because of the time that Jon and I worked together I was able to gather the basic knowledge of most of the tools and know how to put together something she really likes. Full top deep side drawers and sturdy! I think Jon would be please watching us and the final product. I am tempted to make a little box for the Celebration we plan to have for Jon in June.

I did have a weird moment today. Of course the phone rings quite often with friends and family calling. But for some reason I was truly expecting to hear Jon's voice when I grabbed the phone today as I answered.

Our weather has kept me at home for the last 5 days. It was -21 last night when I went to pick Hailey up from the basketball game! It is suppose to stay in the single digits for another couple of days. The roads around here are sheets of Ice So I keep plugging away at things that have to get done.

Love you all and thank you.
Katie
 

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I admit I mostly now remember Chris looking how he did pre-ALS. When I see photos of him in those last 2 - 3 months it is like that bucket of ice. Such a shock, mostly to realise that I had watched him progress to that point, but seeing it again is like wow. What a monster this disease is :(

I'm so glad to hear from you Katie, it is good to have a little section here that is just ours, to reflect now and then. We have all the other sections to give support and discuss other stuff in, but now and then it is good to have a thread for us.

I've been reflecting on a lot of stuff just lately and this thread is very timely for me.
 
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