sad turn of mind - dont read if fragile

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sleepy

Distinguished member
Joined
Dec 4, 2015
Messages
119
Reason
PALS
Diagnosis
01/2016
Country
AUS
State
NSW
City
Armidale
not my usual hilarious self (no really I am), but have thoughts in my head. maybe others have dealt with?

I find myself reading the recent 'in memory' threads, I've started to call it the departure lounge, names I knew, people I didn't get the opportunity to. And some comments from cals in various threads - don't want to single any particular posts out, its been a creeping thought, building momentum, getting more persistent.

how can I put my cals through this? my kids? all day caring, thinking about needs, managing nurses, staying ahead of the progress, managing the new normal. feeding clothing washing toileting communicating. No time for other stuff. how can I make it all about me and my needs? maybe it would be easier if it was quick - still sad, but they will have to deal with the end at some point.

I will be discussing with psych, but it doesn't feel like depression talking. feels like having a lucid harsh reality moment in the otherwise 'stay positive' ocean. The ocean views are lovely but am I stealing their time?
 
Sleepy, as a past CALS all I can say is - no matter how hard it was, how heartbreaking, exhausting and awful to watch my husband go through ALS, I would do it all again in a heartbeat. If I could turn back time, I would of course have it that he did not get ALS, but if I could turn back time I would still do it all again - he was worth it. That's love.

HE did not put me through it, ALS was the monster that ripped him out of my arms.

Separate the person from the disease - you are not the disease.

If your CALS chooses to stick around and care for you, who are you to say you are stealing their time? No you are allowing them to learn about love, and to live it.
Yep it's totally crap, it's damned hard, but were the roles reversed, were the dice to have fallen on your CALS and they had ALS, what would you do?

It's purely chance that it's you and not your CALS.

I made the conscious decision every single day to stay and look after Chris. I never felt I 'had to', or that I was caught in some trap and had not choice. I stayed and I strove to give him the best care and maintain all his dignity.

CALS do have to let off steam, and sometimes PALS should stay out of CALS threads as it can give the wrong impression. We nearly go out of our heads at times, but it's the disease, not the person.

Great idea to discuss with your psych, you do need to really work through this, as it is a very real concern you have. I'm glad you felt you could open up and start to talk about it here mate xx
 
Sleepy, I am sorry that you of all people are feeling this way. Along with all the bad and sad posts, there are also posts of joy, spending beautiful moments together. I have struggled as a CAL and know Steve worried what this is doing to me but I will make it through. I do not ever think I want it to be over. I want him to be here as long as he can and know he will know when its time. It is a choice that only you can make but trust me when I say that we do what we can because we love you and want you to be as comfortable as possible.

The truth is that this disease does suck for everyone but it cannot touch our hearts and minds. We can control that and make our decisions based on when the quality of our lives are at a standstill.
 
Sleepy
Whilst I'm not terminal, I have another issue going on that's affecting my quality of life. Still not terminal.

My emotions are all over the place. It's horrible.

And yet I still have not even an inkling of what you are going through.

I'm glad you are here to talk to people who understand, really understand.

All the best with the discussion with your psych.
 
I am sorry. We all have ups and downs for sure. While planning ahead is important so is not dwelling too much on what is to come. I strongly suspect that your spouse and kids want you around as long as possible as long as you are still you. My sister was utterly dependent for the last several years yet remained a mother to her daughter in every sense of the term. As she was not ready to leave, every one of us wish we had her here still. You have value as a person and you will continue to do so. Is it a hard road? Absolutely. But there is joy to be had if you can only find it.
You are absolutely allowed to have down times. It is part of the process. I am glad you are going to talk to a psych person. Sometimes there are parts of the forum we should not read. I always say read at your own risk in the CALS section and I think the CALS do try to keep certain things in their section. In memoriam is an important part but it can be overwhelming especially when we hit a bad patch as we have recently

Remember none of us know the course our illness will take. There are no rules with ALS.
Feel free to vent, feel free to pm me too if you want to chat
 
Sleepy, I admire your honesty and thoughtfulness.

I know my pals worried about me a lot. The care was exhausting and debilitating but except for maybe the last two months I wouldn't change a moment. As I've said before it was my honor and privilege to care for such an incredible man. My love just grew and grew as I watched his courage and humor. He said early on that as long as he could enjoy visiting with family and friends he wanted to continue. He had wonderful conversations with his kids and siblings and friends. We had laughs, conversations and shared so much. His choice was a peg but no intrusive ventilator.

That all said, the last couple of months were brutal for him. He was in almost constant pain, drugged up and completely dependent. That was not a choice he would have made and I wish we had made a plan for that time.

Sleepy, you're early on, you have lots of love to give and share and receive. Do talk to your psyche and make your own plans.

Sherry
 
Hi sleepy,
I'm sorry you're having a hard time. I'm not the best writer so please bear with me. I learnt very quickly in the beginning not to look too far ahead otherwise you can scare yourself. I jumped in and read way too many posts on here and the same thing happened. So I learned to take it one day one week at a time unless to plan something fun like family holidays. While I don't suggest this for you I read no posts here for 2 years, just don't read ahead of where your physically at! 3 years on I can read anything without fear and appreciate the cals posts and have taught me a lot . My mum my Carer raised 4 kids & when I was 16 took in 2 of my nieces as babies . I moved in to be looked after by her when 1 aged 14 was still here. I felt terrible she's 60 and still caring for everyone and unable to live her life. I wanted to just hurry up and pass. Only recently have I told her how I feel and she doesn't feel I'm stealing her life and like any loved one wants me for as long as she can. Please try not to feel that way , I don't have kids but I have 13 nieces/nephews and still have a great time with them all plus all other friends/ family. You have many good times ahead despite this monster ALS . Sending hugs
 
Hi V,

I know where you’re at and, knowing what I now know, (being much more advanced in my ALS) I will say a clear “You’re over-thinking things”, which is very understandable. Sorry to be so blunt, but I didn’t want to sound patronising either.

You won’t need care 24/7, so there WILL BE time for “other stuff”. Nor is it “all day caring” – I’m almost totally dependent, but only need someone every few hours. I think it’s important to point out that my hubby works full-time so only looks after me from 7pm-7am. And I don’t have a trache (like Australia, we in Ireland rarely get trache/vent for ALS)

Your kids will be so much better for having you around as long as possible. I used to think it’d be better for them if I died sooner rather than later, but I’ve been able to continue rearing them and seeing them grow. Words cannot describe how grateful I am for this.

It isn’t easy, no matter what way you look at it. I know, with hindsight, that I spent too much time worrying over things I couldn’t control.

Stay strong V,
X Ells.
 
I recently lost my pals. I have a 13 year old son. For all the difficulty in managing the details, I wouldnt have traded a moment of time. We travelled, we laughed, we had company, we went to theme parks. We did everything we did before als with some modifications. Of course things are difficult right now, uou are newly diagnosed. But please, take the opportunity you have to enjoy your family and make beautiful memories with them doing the things you love.
 
Hi Sleepy, sorry you're feeling down. This is a whole body disease. Yes the obvious things are physical symptoms but the psycological toll is just as severe. If this doesn't make you sad, you're not paying attention. As you have to come to accept the physical things going on, you also have to cut yourself some slack on the mental toll too. This in no way means you can't be helped by talking to some one or even taking meds. Just think of it as seeing an OT or taking baclofen, it's just for your head and not your body. Any day this side of the grass is a good one.
Vincent
 
Sleepy,
My husband believed lucid was the only way to be, and that's how he went, so you can be as lucid as you want as far as I'm concerned. Talk to your wife and kids about how you want it to end, put it in in legal form, then get on with being family however it works out.

I know you can't know this yet, but you're wrong about there not being time for the things that aren't you. And you still want to see as many of those things as you can -- your kids growing, friends, your wife with them and you both. It will be hard for her, and all of you, but will you tell me that of your life so far, the easy stuff is all that you fondly remember? So it will be for them.

Best,
Laurie
 
Sleepy, I often worry about our PALS reading what we CALS vent about, for just this reason. At the same time, I think the free exchange of information is one of the strengths of this group. I also think that your thoughts are normal and valid, but I hope you'll think past them and listen to what people here are saying. You are the center of your family, and they need you. Yes, I've read posts by people who are torn in too many directions and feel life is slipping by without them. I would also like you to consider how much stronger adults your children will be after traveling this journey with you, and what they will lose out on if you make an early departure.

You are thinking of your family, so I don't see you making everything about you. Modifications will be made, but they can be made so that the family can include you in as many normal activities of life as possible.

As a CALS who is just starting to appreciate how long and difficult this journey may be, a simple thank you or other expression of acknowledgement and gratitude from my husband turns endless mind numbing tasks into expressions of love and togetherness. Don't rob your family of the opportunity to show you just how very much they love and appreciate you.

Becky
 
Thank you all! I needed to read that.

I do respect the role of the cals space... I wish my husband would use it or talk to someone. I don't think he's against it, just overwhelmed with busy. I don't go into cals area (I think) but I did look at in memorium... Think I will stop doing that. Just wanted to show support as I have received support.

Ells thank you I appreciate your direct comment! Vincent lol at 'you're not paying attention'. Thank you all... Cals and pals, each perspective is so helpful.
 
Sleepy, Many pals have read the cals section and occasionally comment with very helpful info or perspective for the cals. Cals will do the same for pals and their section. However, it is kind of a beware of what you might see if you venture in the other section. :)
 
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