Old 03-19-2017, 10:10 AM #1 (permalink)
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Default Trying to grieve

One month and one day! I'm checking in to say hello and to let you know that this forum is still so very helpful. Since Jim's death I have been surrounded by family and our three sons. I've had wonderful support from so many. But still I cannot leave this journey behind. Jim's funeral was held on our farm,with so many attending to say goodbye. Someone counted over 700 cars! Can you believe this? It all seems such a blurr now. After the organisation needed to conduct a farewell gathering. We even had to mow the paddock as it is summer here and we were worried that cars driven on dry grass would start a bush fire! Plenty of wine and beer was consumed. The local school and neighbours all catered with amazing food. My man was certainly farewelled just as he would have wanted...a big party! Only now,all I keep flashing back to is the awfulness of ALS. I try so hard to see beauty in my surroundings,but, I keep reliving in my mind,our last moments,our last day,the last symptoms that tipped my beautiful man to say " no more" after fighting such a courageous battle, he couldn't do it anymore. I can only shed tears when I am alone. ( usually in the shower) or when I read of other cals battles. So thank you for having a group for past carers. It allows me to speak my mind a bit. For ages I wanted to be free of a life with ALS and now I am free,it doesn't seem to want to be gone.
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Old 03-19-2017, 10:43 AM #2 (permalink)
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Default Re: Trying to grieve

How wonderful the love and support your family and community have shown. I wish there was something I could say to help but please know I am thinking of you and hoping you find some comfort and peace. Kate
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Old 03-19-2017, 01:21 PM #3 (permalink)
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Default Re: Trying to grieve

Aussie, sounds like a great sendoff for him, with lots of planning. Kudos to you and your sons for making it happen.

After only a month it would be very early for ALS to be "gone" from your mind. As you've seen here, those of us who are years in are not yet at that stage, and I'm not sure I, at least, will be any time soon. But it becomes proportionally more about other things, about the future rather than the past.

As the months go on, you will begin to see and feel more of the beauty and promise in all that is still out there for you.

Best,
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Old 03-19-2017, 02:05 PM #4 (permalink)
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Default Re: Trying to grieve

Hugs, one month is such a short time after all you have lived through. Please do give yourself permission to cry as you need, to work like a maniac, to lay about and do nothing, to walk and sleep and eat and scream even.

The only way through the grief is through it. You can't avoid it, nor go around or under it, or even shut it out. It will catch you and it will hit harder!

We also, very often, have a PTSD. You described something very traumatic, so of course you have a reaction to going through this trauma.

Do you see a counsellor? Pall care usually offer grief counselling if you don't have someone? Carers NSW also provided me with a lot, I presume you have Carers WA?

And of course there is here, where you can receive lots of understanding and acceptance xxx
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Old 03-19-2017, 11:24 PM #5 (permalink)
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Default Re: Trying to grieve

Hugs Aussie! I think of you often. One day at a time.
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Old 03-25-2017, 06:53 PM #6 (permalink)
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Default Re: Trying to grieve

Thank you everyone for your kind words. I think that I will stay around here ( on this forum) for a while. I feel so helpless for you all battling along with your pals.
Our doctor and hospice nurse visited me and we went over Jim's last moments together. It was helpful for them and for me.
You see, Jim asked me to call the hospice nurse as he couldn't tolerate his loss of not swallowing anymore . He was so distressed. From that phone call, everything went so fast . The doctor was called and Jim just wanted to go to sleep. It was thought that with sedation Jim's breathing would weaken and he would not wake up. He would be at peace. Well, this didn't happen as his breathing machine was not set on spontaneous mode.his machine had to be changed and I had to do this with instructions over the phone. ( we live rural) no one else knew how to operate his machines. Our respiratory technician helped me over the phone . Still Jim's breathing continued. Eventually, we watched as Jim was sedated further, Jim tried to slip away but his body seemed so strong after failing for days. We all said goodbye eventually. We were at home just where Jim loved. Our boys were with us too.I am retelling this ,as, for ages I still keep the thought tucked away that if I hadn't made that call on that morning then my Jim would still be here. I think that I am slowly letting go of that thought. I really needed to chat here as I can't elsewhere. If you are reading this and your pals is reliant on breathing machines 24/7 ( not trached) then maybe it is important to know about your machine and end of life care using vpap machines.
No one spoke about it to us, but I didn't ask either. Thinking of you all.
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Old 03-25-2017, 10:31 PM #7 (permalink)
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Default Re: Trying to grieve

Aussie I can tell you that after a year we still think about this wretched disease. My son and I look at pictures, talk about his dad, but we also think about our future. Where would we like to travel, what professions is he interested in...etc.

Life goes on with or without you and as you begin to heal you will find your way to what your future holds.
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Old 03-25-2017, 11:56 PM #8 (permalink)
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Default Re: Trying to grieve

Aussie, thanks for pointing out that a BiPAP/VPAP may need adjustment when it is time to let go. I am sure thinking about that time is still painful. I will say that while it may be true that if you hadn't made the call, Jim would be alive, clearly, he would not be "living" by his definition.

The machine may also need adjustment when other changes occur. I am happy to help CALS adjust the settings as needed.

Best,
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Old 03-26-2017, 02:40 AM #9 (permalink)
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Default Re: Trying to grieve

It's so natural to go through those thoughts. But I'm really glad you are starting to let them go. In your heart you know he wouldn't simply 'still be here' had you done anything different, but isn't it awful how those thoughts go around and around anyway?

I really encourage both CALS and PALS to think as much as they are able, and to discuss with each other and their team, things about what they want and how they want the end to be. There are no guarantees of course, but the more clear this is, the more prepared we as a CALS can be, even in our hearts, to respond to whatever situations do arise.

Every one of us however still has to come to some kind of terms of understanding with the absolute terminal nature of this disease, no matter how much we want not to. Particularly us CALS. I think that there is a degree of denial for PALS that can be healthy for them. As long as they are not denying there is anything wrong at all, some degree of denial can help them live a bit more each day. For us CALS it can help too, but we are going to be around after terminal.

At the end of the day the monster we call ALS took your man. You honoured his end of life wishes and that is such a gift! It wasn't easy, you are so aware of that. But knowing that this terminal monster is what took him, not any choices you made, any mistakes any fast actions, lack of actions or any other thing, is really important.

And here is the biggy - you are left behind to grieve and to process the whole rotten mess we call ALS. But you know what, there is life after. We are changed, we witnessed a horrendously traumatic situation. We take time to find the shape of that new life, and there can be some surprises. There is a time now to grieve and to process it all, don't expect to just get over this in a few more weeks or even months. Day at a time. And rant here, talk it through, we get it and have your back still
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Old 03-26-2017, 07:58 PM #10 (permalink)
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Default Re: Trying to grieve

Aussie, I can't imagine what that must of been like for you, to have to problem solve at a time like that. It's one of my biggest fears. You showed such strength and courage in your love for Jim. My heart goes out to you and my thoughts are with you, Kate
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