Losses

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ARCG

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One of the most difficult aspects of this illness is the continual losses and the grief that follows. Just when one has adjusted to a new loss and gone through the changes and made the accommodations necessary and grieved over the loss, a new one rears it’s head and the process starts all over. It is a constant battle to not be overwhelmed by it all. My pals and I make a valiant effort to find joy in little things and adjust but yet another loss this weekend has left me reeling. The weight of responsibility that falls on my shoulders to handle everything and knowing there are new changes that will need to be handled around the corner is so hard at times and my prayer every day is to be the great caregiver he deserves, but sometimes the sadness and fear is so exhausting, it’s so hard to not show it, no one but you all understand.

I am dreading the holidays.
 

pittsburghgal

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ARCG, I know exactly how you feel. The continuous parade of losses is soul crushing for both the PALS and the CALS.

I, too, hate the holidays now. It is so painful to remember how great the holidays used to be. We have been going through this so long that now almost everyone has drifted away and is wrapped up in their own holiday plans.

Sending you hugs.

Sharon
 

affected

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Each loss is indeed a whole new grieving process, and nothing is ever the same again.
Your sadness and fear are both so totally valid. Many hugs as we head into one of the hardest times of year for so many xxx
 

affected

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No offence Al but CALS have a right to vent their valid feelings without being told to 'make the best of their situation'.
I am certain these CALS here will make the best of their challenging circumstances, and are doing so every single day. BUT they have a place here to feel safe to let out their feelings and simply be understood, then back to the fray they go and make the best of.

Christmas means many different things to different people, and for many people it is the worst and hardest time of year, despite all the glitter and bright lights consumerism makes of it all.
Sometimes we just need to be heard here, I hope you understand where I am coming from in advocating for the CALS section here.
 

Jrzygrl

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ARCG,

So true, I do think only a CALS can truly understand. The enormity of what we go through is overwhelming.

Sending big hugs.
 

KarenNWendyn

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I feel inclined to step in here as a moderator.

Yes this is a forum and a variety of opinions are welcomed and encouraged. However, the CALS sub forum is set up as a place where CALS can feel safe to share their unique concerns. Some threads are more welcoming to both PALS and CALS, and others are more sensitive and should be only for CALS. We have to use our judgment. I think the current thread “Losses” started out with the intent of being in the latter category but has now taken a different direction. Some posts have been deleted per request of the person who posted them. I am moving another to a new thread on holidays in order to keep the current thread reserved for CALS. When in doubt, I think it’s best for threads in the CALS forum to be for CALS only unless otherwise specified.

There is a PALS subforum which is intended to be a safe place for PALS. I think we should try to respect these boundaries.

The general forum can be for everyone.
 
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Clearwater AL

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Karen, well said. I apologize for commenting on the wrong sub-forum.
 
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Nanders

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Thank you Karen .. I’m sorry.
 

ARCG

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Thank you for the support, this is a place I have always felt safe to share. I shared once on another forum for ALS and was immediately attacked for feeling sad and never posted there again. Here I have always felt supported. It is important we be free to share without judgement, it strengthens us as we push forward.
 

stellfox

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My heart aches for you all - my dad, brother and sister all had their journey within a 3 year period and as each suffered the losses you speak of it was so rapid that we weren’t even able to keep up. I am sure we all feel the same but there is a time coming you can look back and be at peace due to your unfailing love and support for our PALS . It will end and is a long hard haul but we all somehow can get through it. Don’t feel alone the community here is on the same page and can be wonderfully helpful. We all understand your pain and frustration
 

vltsra

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Dear ARCG your words resonate so much with all of us. I have been grieving my husband's continual losses this year. I so feel for you when talking about the responsibilities that are falling on our shoulders - first and foremost to keep our PALS safe. This is such a hard journey for all of us. It helps all of us CALS to know we walk this path together.

V
 

ARCG

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Thanks, V. Tomorrow I will give thanks that I found others who understand.
 

lgelb

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Speaking of Thanksgiving, I have no doubt that every one of our PALS was or is at root thankful for their CALS --we are all people doing our best, and none of us saints. No human could fail to grieve the losses we witness.

Wishing all P/CALS some simple joys of this season.

Best,
Laurie
 

Bestfriends14

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ARCG, thank you so much for being brave enough to voice what I (and others, I am sure) feel. I love my husband with every fibre of my being, but each day I am scared of what the future will bring and how I will handle each loss. Now, this is not all I focus on, but these thoughts creep in when I am driving, cleaning or doing things where I am in my own head. This year has been the most losses-my husband is still slow progressing, but breathing has dropped a lot, both legs are affected, both hands, walker in the house, and PWC outside.

The holidays bring grieving in its own right. We love Christmas and it is so hard not to mourn what Christmas meant when he was healthy. The pain nearly takes my breath away when listening to Christmas carols and looking at the lights, remembering when we use to decorate together, and we both shared the driving when looking at Christmas lights in different neighbourhoods. Hugs to you during this holiday season.
 

ARCG

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The loss of privacy is also difficult to deal with as well. I am grateful for the folks who come to visit and/or help but always having someone stopping by, whether it be to installi or delivering new equipment, friends stopping by to offer their well intentioned suggestions or opinions (which always involve me taking on more tasks), or just out of town guest visiting can be exhausting. The pressure from folks who want me to socialize this time of year and don’t want to take no for an answer is also stressful and, even if I felt like it, thinking about the logistics involved in arranging for the extra care for my pals so I could attend holiday get togethers is overwhelming. This is not a hallmark movie. I am much more at peace when I can shut out the noise and focus on the tasks at hand.
 
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