- Joined
- May 29, 2014
- Messages
- 775
- Reason
- CALS
- Diagnosis
- 04/2014
- Country
- US
- State
- VA
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
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
