Old 01-29-2019, 09:16 PM #1 (permalink)
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Default Shifting Sands...

Our journey began at a Joe Bonamassa concert in November of 2012. With no advance warning, Darcey was suddenly having difficulty walking. Later that same night, she'd be unable to rise from a seated position. It was the beginning of a life phase that neither of us anticipated.


For all of 2013, and leading into 2014, we put life on hold and chased a diagnosis that didn't echo the symptoms that Darcey was experiencing. In the spring of 2014, Johns Hopkins welcomed us into their fold. Concurrent with that, Darcey's recoverable CIDP diagnosis was morphed into one of terminal ALS.


Fast forward to March of 2015 and Darcey was given notice that she was likely within 6 months of her life's end. I remember her smiling at the doctor and saying, "Thanks for that heads up... but I've still got things that need doing and simply don't have time for things like dying."


So much has happened in the intervening years. We battled cancer in my girl puppy (Elsie) and rejoiced in her survival/recovery... only to lose her later to congestive heart failure. Elsie was a "Daddy's girl" and was to be my much needed companion upon Darcey's eventual passing. It was extremely difficult to have to make the decision to put Elsie down.


We dealt with Darcey's perpetual and steady decline in function... and I was always the Champion... remarkably able to find new ways to compensate for that which would be forever lost. We took pleasure in watching our son (Jim) find success in Brooklyn, NY while we held firm to our home roots in VA. Neither of us anticipated our other child (Connie) moving from a handful of miles away to thousands of miles away.


Darcey had always been vocal about how determined she was to stick around, provided her "quality of life" (QOL) was good. For a good many years, now, it has been my greatest achievement to make each next morning worth waking up to for Darcey. And I have taken great pride in my success.


Much of Darcey's day to day centers around her ability to use the computer and to engage in social networking. She has successfully used voice dictation software to control and interface with the computer... long after she lost ability to use keyboard or mouse. Of late, however, ALS has finally reached its touch to include that safe haven above her shoulders.



Swallowing has become difficult and her voice weakens with each passing day. Recognizing that she might soon be unable to continue her daily use of the computer via voice dictation, we sought other avenues. And we were fortunate to have been granted the use of a computer with eyegaze technology so as to continue beyond the loss of her voice.


On this last Thursday, the eyegaze computer was delivered and some basic training was enjoined. On Friday, Darcey attempted to acquaint herself with it even more. But it wasn't yet set up with her email, so she pushed it away and showed signs of depression.


Saturday, I spent time getting the new computer set with her Exchange Mail and able to log into Facebook. We'd get past those two primary needs before moving onto Netflix and Amazon Prime. So on Sunday evening, I suggested we spend some time on the new computer.


About every 15 minutes, I'd go in to check on her. She was writing our daughter an email. I could see that it was going slow... but at least she was moving forward with it. About an hour an a half later, I noticed that she was no longer working with it. Instead, she was just staring at a blank screen. She asked me to take it away. She then asked me to take of her mask.


Darcey has needed the Trilogy to breathe full-time for several years. The longest she tends to be able to go without her mask is two or three minutes. So when she asked me to take off her mask, I told her I couldn't do that. She began a litany of repeated, "take off my mask... take off my mask... take off my mask". I told her I couldn't do that. She asked why. I told her that it just didn't feel right to do so.


Darcey did not talk much the remainder of the night. When she did talk, it was to ask that I take off her mask. On this one particular night, I was glad to be going to bed and, at least momentarily, ending what for me seemed a nightmare.


Monday started with Darcey seeming to be in better spirits. Surprisingly, she didn't want to use either computer. She also did not eat anything for breakfast... for lunch... or for dinner. Today, Tuesday, she repeated that same thing... not eating throughout the day (though she did spend some amount of time on the original computer). Tonight I asked, "is it your plan to stop eating?" She replied, "I don't know yet."


Darcey had always said that when she could no longer communicate... or when she could no longer use the computer and interface with her friends... or no longer be able to chew, taste and swallow food... she'd be ready to call it quits. It appears that she thinks that she's now there.


I'm probably having more difficulty with this than she is. I feel as if I've begun to fail at making tomorrow another day worth waking up to. On some level, I've always known that such a day would come... but I wasn't ready to concede that we were anywhere close to that day... at least not yet.


And so, for the moment, I wait minute by minute to see where the next moment takes us. Even with this, there are still things to feel excitement for. We've had a new baby puppy born to us last Wednesday. Her name is Elise and she is a black & white Coton de Tulear (same breed as was Elsie). Elise won't be ready to come home to us until sometime in April. I remain hopeful that Darcey will want to be around to welcome Elise into her new forever home. Time will tell.


In any case, I felt the need to share the shifting sands that are upon us. I've encouraged Darcey to participate with some of the fine folks I've met within the walls of these forums. If you are one of those folks, please consider keeping my thoughts private. This has been my "haven and safe place". I would appreciate your consideration. Who knows. This may all be just "one of those moments" and we'll quickly return to our previous "normalcy".


As always, My best goes with each of you...


Jim
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Old 01-29-2019, 09:25 PM #2 (permalink)
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Default Re: Shifting Sands...

My heart goes out to you. We are also in transition, though the details are different. Just today, both of us have told Dad that's it's OK to go if that's what he wants. My best also goes with you.
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Old 01-30-2019, 01:31 AM #3 (permalink)
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Default Re: Shifting Sands...

Jim - In early Dec, you were one of the first people to help me as I dealt with my husbandís dx. Your words were kind and calming. Your story was helpful and inspiring. Thank you.

I got the sense that 1 of your guiding principles is to follow her lead which right now, seems like a difficult one. I also felt that you have a solid foundation of faith in one another which gives you both strength.

Shifting sands is a good way to describe how you must feel as that foundation is moving right now. I hope itís a temporary shift as your wife adjusts to a difficult new normal.

I hope you can find some solid footing and calm soon. Itís hard to be there for her when you feel unsteady. Hang on and in there. Please let us know how itís going.
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Old 01-30-2019, 06:03 AM #4 (permalink)
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Default Re: Shifting Sands...

Jim, sending you both love and hugs.
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Old 01-30-2019, 06:20 AM #5 (permalink)
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Default Re: Shifting Sands...

Jim,
Your Darcey is one lucky lady to have you. Your story brings me back and I can so feel your pain. Just so you know my brother once went 11 days without food (no tube) and remarkably bounced back (as much as you can with ALS) for a bit. It does sound like your Darcey may be getting tired of the fight and honestly who could blame her.
You are not failing Darcey at anything. I'm sure if you asked her she would whole heartedly agree. Keep reminding her of the beautiful new puppy Elise coming in April. Show her pictures if you can. Keep doing what you have been doing Jim as it sounds like you've been doing everything right.
Sending you both a hug. You will both be in my thoughts. Jlynn
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Old 01-30-2019, 08:18 AM #6 (permalink)
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Default Re: Shifting Sands...

Jim - huge, huge hugs coming your way. I will say that learning the eyegaze takes practice, short interval type practice. I would encourage her to give a go a little at a time. At first Brian wouldn’t do it either, then he wrote long emails using it.

It maybe temporary with Darcy as she learns to accept this new change and not an easy one either.

Just know you are doing everything and always have. You are an awesome caregiver.

Hugs
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Old 01-30-2019, 12:22 PM #7 (permalink)
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Default Re: Shifting Sands...

Oh Jim.

We can never really explain to anyone else what it actually feels like to go with the wishes of the one we love. I talk about this here a lot, but until you are in the situation, the depth of what it feels like can't be fathomed.

I know that you will do whatever Darcy wishes, whatever those choices turn out to be, and you know I'm there at your back mate. xxxx
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Old 01-30-2019, 01:13 PM #8 (permalink)
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Default Re: Shifting Sands...

Oh Jim
Sending you and Darcey all the good vibes there can be. You love her so much and she loves and trusts you so much obviously so deep down when you follow your heart you do the right thing
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Old 01-30-2019, 03:59 PM #9 (permalink)
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Default Re: Shifting Sands...

Thank you so much for the thought out update. You're my personal hero. I feel for your little lady hitting such a rough patch, the loss of easy communication would make me freak. Wether she practices and gets used to the eyegaze or she decides that she might log off before her QOL deteriorates, she'll do the right thing for her and I hope she'll take your feelings into consideration in the way she goes about it.
Big fat hug coming in! Stay strong.
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Old 01-30-2019, 06:59 PM #10 (permalink)
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Default Re: Shifting Sands...

So tonight I asked Darcey if I could fix her something for dinner. She replied, "No... I'm okay." So I asked her if she would prefer that I not ask until she was ready to begin eating again. She then let me know that she was "done" and had no intention of ever eating again. I offered to call in hospice so she could take off her mask and not have to worry about "air hunger". She said that she didn't want hospice... and that she hoped that she'd be gone... or near gone... in about a month.



She went on to say that her decision was because I didn't have the time to take to sit down with her and to help with the new eyegaze computer. Wow... I don't know when I've ever had my legs swept out from under me quite like that remark did. I thought about defending my current lack of time... but some part of me believes that she needs an excuse to support her decision. And if that is so, the last thing I'd want to do is to take that away from her. It still hurts like hell, though.


Between us, I have been busy. I still run my own company. Some time ago, I moved the business home and am now the only employee... but that just means I no one else to share work load with. Although I'm not taking on new clients, my existing client base loves me and keeps me quite busy. I somehow ALWAYS manage to get the client work done. But I'm two months behind on invoicing... and i simply can't let it get any further behind. My clients, while appreciating what I do for them (and do in a most timely manner), are not apt to make payment until they've been invoiced. Imagine that! It is also tax time. I've a number of things that need doing before the month of January is done (in fact, I just tonight completed those).


Time is my most precious commodity. I don't complain about it (the lack of it) to Darcey, as I haven't wanted her to feel that she was a burden. She takes Lorazepam at night to help her go to sleep and to stay asleep. That has worked well for me. I get her all tucked in and then I crawl into bed. Thirty minutes later, she's in dream land and I get back up. I'll walk downstairs, and get another two or three hours of work in. I try to call it quits by 3AM so I can get a few hours of sleep in before it is time to start that next new day.


Tonight, I'd just like to call it an early night and put us both to bed. But I have an onsite visit tomorrow, and still a few hours of prep work to be ready for it. Funny thing is... tonight I feel more tired than most nights. Perhaps another cup of Constant Comment might be called for...


My best...


Jim
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Old 01-30-2019, 07:17 PM #11 (permalink)
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Default Re: Shifting Sands...

Jim,

I'm so sorry. You are such a good caregiver and husband. I wish I could transport myself up there and help with the business.

Just know we are all here for you.

Prayers and love, Kim
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Old 01-30-2019, 08:08 PM #12 (permalink)
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Default Re: Shifting Sands...

I admire you so much. Wishing you peace and strength and comfort to your Darcey.


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Old 01-30-2019, 08:13 PM #13 (permalink)
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Default Re: Shifting Sands...

I donít get to post very often but you are an inspiration and an amazing caregiver.
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Old 01-30-2019, 08:15 PM #14 (permalink)
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Default Re: Shifting Sands...

Comfort to you both.
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Old 01-30-2019, 08:39 PM #15 (permalink)
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Default Re: Shifting Sands...

Jim,

Of course, it is a pretext. Darcey would never say that to you otherwise.

And acting as if you believe it is very brave. She could still change her mind -- or she could again ask you to take off the mask yourself, after a dose or more of lorazepam. Or she might want you to ask the question yourself, for fear of burdening you.

Only you know what you are prepared to do, but it might be as well to think on that.

None of it is right, fair or acceptable. It just is.

Best,
Laurie
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