1 Month Warning...

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Nuts

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1 Month Warning. That's what I just gave the family, via the private family FB page. One month of no quality, coherent time with Matt and we will be taking him off the vent.

He was clear headed about a week ago just long enough to tell me that crazy communication doesn't count, so when he's not able to understand and interact I need to treat him as if there is no communication at all. He originally gave me 30 days to be sure, so that's what I'm going to try to give myself now.

He thinks we are trying him up and torturing him. This is no good. It's cruel. He has fired the help several times and is very unhappy that I keep bringing them back. Today he described what he would do to his nurse if he came back in the room, and it wasn't good. Well, if he could move at all it wouldn't be good. He told the massage therapist today that he might have to divorce me because I keep him tied up. Wow. Just wow.

I had hoped to get past the holidays, but I'm not going to put him through this that long. I've told everyone that in this state he won't understand what he's already demanded that I do, so if they want to be here, we will tell him it's a party, and I'll do that same terrible thing he threatened to anyone who tells him differently. Actually, I think they will all be supportive. They've seen what he's going through.

Now to get through the rest of this month.

When he's up, he rages for hours and hours. 12 or 13 hours is not unusual. When he's not, he sleeps for days. I now pray for the sleepy days and nights.

I can no longer think of any way to make his life better, or even worth living. I fear we've run out of time. At the end of January it would be 5 years. I'd love another, but not like this.

So, do I put up the tree and turn it into a holiday party? Do I give him Christmas with his grandkids, or will that mar Christmas for the family in the future? I will ask them, but I'm hoping that doing it right will create wonderful memories and then allow them to have the holiday at at the normal time and perhaps just give him a toast.

Oh man, I've done it. I've scheduled it...sort of. I'm still hoping we can make some medication adjustment and get some more good days, and I'll call the Pallative Care doc tomorrow to discuss that, but as a friend told me today, restarting the clock because he has one good day out of 30 is not the answer. Wow. December. It's right around the corner.

Im in the middle of having the kitchen remodeled. It's the last big project he wanted to see done. Once it's finished, I'll decorate and then bring him out. Somehow, he's getting out of that bed and back into the living room/kitchen area where he can see his lake. Please God, let it happen.

I think I'm in shock. Shot. Yes, that's the answer...a shot of something strong. I think I need it.

Becky
The Queen of Crazy

PS. How the hell do I write an obituary?
 

KarenNWendyn

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I’m so sorry you guys are going through this. I’d like to send you an endless supply of virtual hugs.
 

wishmobbing

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It's sheer cruelty you both have to live with this. Can't imagine how you feel. All feelings are probably so convoluted you're getting dizzy.
So good Matt was clear enough to state his wishes and understanding of communication. He trusts you. You've got this. Doesn't matter how you'll manage the whole thing, you'll manage it.
Becky, you truly are the Queen of Crazy. I wish Matt peace and sleepy days and hope for you to find something to hold onto on the last huge loop of this rollercoaster. Hugs!
 

Jrzygrl

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My heart breaks for you, Becky. You've done everything humanly possible for Matt and know that you would continue if it were his wish. This is such a cruel, cruel disease. I wish you both peace in the coming days. Hugs.
 

affected

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You know it in your heart my very dear friend.
Underneath it all Matt knows too.

I'm just so sorry you have to make these choices. I've got your back if you need anything xxx
 

lgelb

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I'm very sorry, Becky.

How do you write an obituary? One word at a time, focusing on what Matt would want said and remembered.

You could even add a Matt greatest pics/vids slideshow to the holiday festivities if you have them, a celebration of life/sendoff. Admittedly, he may not be in the position to enjoy it as have others' I have been to, but at root you don't really know what he's registering...and it helps the living. If he sleeps, nothing lost, and if he rages, he exits stage left and you tell the grandkids, "Back to the slide show -- check out these Colorado pics..."

I do have to ask (not that you have to answer, just random thoughts)...he is obviously on drugs that affect cognition/disrupt sleep. Has a psychopharmacologist evaluated his drugs/a pulmonologist evaluated his Trilogy settings based on your reports and the machine data? This is not usually palliative care's sweet spot since they are looking the other direction of the funnel. Like you, would just want to exhaust the avenues that might lead to more good days.

Failing that, as I have said here often, giving our PALS a good passage is both our last and greatest gift, and we have all seen the alternative, in and out of ALS. Props and hugs to you and everyone out there who has or is willing to stretch every fiber of your heart, brain and energy to make that happen.

Best,
Laurie
 

JimInVA

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I hope you can feel the hugs and the love. There's enough to take what you need and still pass some on. Know that you are not alone in this...


Jim
 

Nikki J

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I am so so sorry Hugs and love....
 

Nuts

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You are all my lifeline. I know I've been gone this past year, but I feel like I need to bring closure to our wild journey by sharing what comes next. If you've been with us for the past 5 years, or if you go back and read, you know that this guy squeezed every bit of life out of the time he had left. Now I have to keep my promise to him and do the hardest thing a wife can do---and do it for him

Laurie, your continuing mentoring is a gift to all of us. Yes, his vent settings have been evaluated and adjusted regularly, and I've been assured that we've done everything we can. Between the vent and the cough assist and the IPV, we are blowing off any co2 that can be blown off, and his lungs are kept clear. The VA has had his meds evaluated regularly by the pharmacist, and we knew months ago that we had entered the stage where his comfort would come at the cost of his clarity.

What is happening now is that confusion and hallucinations welcoming a new component: mean behavior. He has told me to move out several times, told his massage therapist that he might have to divorce me because I keep him tied up, and this morning he asked his daughter which house she wants. He keeps asking for a gun and threatening to use it (he can't move his hands for heaven's sake).

I love the idea of the slide show and pre-departure celebration of life. Maybe I can wrap our minds around making it a month long celebration, instead of a month of mourning and counting down the days. So far the family has all been very supportive--we'll see if my announcement brings anything other out of the woodworks. I'm not worried about being able to handle it, but I sure hope it doesn't happen.

This morning he is on a rage. Everyone is mistreating him. We have myself, a nurse, an aide, and his daughter, and he's off the hook. I've just been summoned again, so I'm trying to gear myself up to go back in. He's run everyone else out.
 

KateEmerson

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So so sorry Becky. Thinking of you both and wishing you strength. Kate
 

Narrowminded

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Becky - I’m sending major hugs and prayers. This disease is nothing but cruel. I am praying for clarity for you and comfort for Matt as he goes through this last month. You have been a truly awesome CALS, one I will never measure up too. Driving cross country so Matt could hunt, hauling all his gear and then some. You deserve many, many crowns.

I am always here for you and hope to follow you this month for guidance as I believe we are not very far behind, other than Brian is not ready yet.

Much love,
 

texastc

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Sending all the strength I have your way.
 

vltsra

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Becky, I'm so sorry you are going through this at the end. This disease takes everything away from all of us, both PALS and CALS. Wishing you can find strength and peace at this time.

V
 

Jlynn

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Becky...I'm thinking of you and sending you strength and prayers as you navigate this terrible journey.
 

affected

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One of the few things I felt a little guilty about was being glad when Chris became unable to speak at all, because he could not say all those horrible things anymore.

He said them with his eyes, but he couldn't spell them out, so those awful accusations stopped.

Love you girl - maybe finding a way to focus on creating something that brings back all the memories of the man he truly was will help you get through this final cruellest of stages xxx
 
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