- Joined
- May 29, 2014
- Messages
- 1,013
- Reason
- Lost a loved one
- Diagnosis
- 04/2014
- Country
- US
- State
- VA
- City
- Poquoson
Nuts dropped me a note in my profile page to check up on me. I responded but was told that my almost 4,000 word response needed to be trimmed to 1,000 words. So rather than to take the time to trim it... or shorten it... I decided to drop it here so that others could also catch up on us. I keep looking for time to be a more active participant here... but time seems to be at a premium. I'm now at the point where I am considering the closing of my business of 27 years and staying home. Perhaps if that happens, I'll be here more frequently. Regardless, here's my reply to Nuts...
Greetings, my friend!
We're doing as well as anyone can do with this nasty disease. We start every day with a morning cuddle and continue to find things to laugh and smile about. I keep telling Darcey, "I'll keep making every day the best it can be for as long as you'll let me". We both know how much work it is and there never seems to be enough time. But this last Monday I was rewarded for my efforts.
Every other Monday, I don't bring Darcey into work with me. Instead, I leave her at home as we have a home health care person (Gina) come in at 11:30AM and stay for 4 hours. This gives me an opportunity to do any running or work that I need to do without having to worry about leaving Darcey alone for too long a time. Our time apart, when it happens, is often limited by time between bathroom trips. We've been doing this routine for several months now and it has been great. This time, I left home about 9:30AM and headed into work. Before leaving, I tucked a wireless phone handset next to her TV remote that sits in her lap.
At this point, Darcey's arms are almost like her legs... they no longer move. I think the only reason she is still able to even minimally move her arms is her determination to move the mouse and continue using Facebook, email and Netflix. I do any keyboarding that she needs and even dial the phone for her. On good days, she can push the phone's speaker button to answer the phone.
At about 10AM, Darcey was beginning to get some gurgling in her lungs. These days, she has no cough that has any merit to it. But it would be okay as Gina would be there at 11:30. By 10:20, the gurgling was much worse... she was feeling like she was trying to breathe under water and was beginning to feel those dark edges that precede fainting or blacking out. At this point she became aware of the fact that she wouldn't make it to Gina's normal arrival at 11:30. So she attempted to call me at work. After multiple attempts, each more difficult than the one before, she managed to get the right number. I answered the phone at 10:30 to hear, "I'm having problems breathing". The next 10 minutes seemed like hours as I sought to get someone there more quickly than the 20 minutes it would take me. If I were to write about those 10 minutes, this note would turn into a novel. I'll spare you that. But that night, when I came home and heard Darcey describe just how close she was to blacking out, I realized that for as much as I thought I was ready for that impending day, I'm not. In fact, I don't think I will ever really be ready. I asked how she managed to dial the phone. She said that as she contemplated this day being "that day", she decided that she was still finding too much enjoyment in each day and was not ready to let go. So she fought through the blackness and the failing hands to get a call through to me. And so, the effort of each day... the determination to make it the very best it can be... was rewarded her determination that "my days are still good".
Thanks for asking about us. We continue to learn more about ourselves, life and love with each passing day. How's Matt doing with his mountain climbing PWC? Have you gotten any of this nasty snow that we've been getting? We're north of you in VA. We were in Durham this last December for a concert... but really haven't gone anywhere else this winter. We're both looking forward to spring.
Again, thanks...
Jim
Greetings, my friend!
We're doing as well as anyone can do with this nasty disease. We start every day with a morning cuddle and continue to find things to laugh and smile about. I keep telling Darcey, "I'll keep making every day the best it can be for as long as you'll let me". We both know how much work it is and there never seems to be enough time. But this last Monday I was rewarded for my efforts.
Every other Monday, I don't bring Darcey into work with me. Instead, I leave her at home as we have a home health care person (Gina) come in at 11:30AM and stay for 4 hours. This gives me an opportunity to do any running or work that I need to do without having to worry about leaving Darcey alone for too long a time. Our time apart, when it happens, is often limited by time between bathroom trips. We've been doing this routine for several months now and it has been great. This time, I left home about 9:30AM and headed into work. Before leaving, I tucked a wireless phone handset next to her TV remote that sits in her lap.
At this point, Darcey's arms are almost like her legs... they no longer move. I think the only reason she is still able to even minimally move her arms is her determination to move the mouse and continue using Facebook, email and Netflix. I do any keyboarding that she needs and even dial the phone for her. On good days, she can push the phone's speaker button to answer the phone.
At about 10AM, Darcey was beginning to get some gurgling in her lungs. These days, she has no cough that has any merit to it. But it would be okay as Gina would be there at 11:30. By 10:20, the gurgling was much worse... she was feeling like she was trying to breathe under water and was beginning to feel those dark edges that precede fainting or blacking out. At this point she became aware of the fact that she wouldn't make it to Gina's normal arrival at 11:30. So she attempted to call me at work. After multiple attempts, each more difficult than the one before, she managed to get the right number. I answered the phone at 10:30 to hear, "I'm having problems breathing". The next 10 minutes seemed like hours as I sought to get someone there more quickly than the 20 minutes it would take me. If I were to write about those 10 minutes, this note would turn into a novel. I'll spare you that. But that night, when I came home and heard Darcey describe just how close she was to blacking out, I realized that for as much as I thought I was ready for that impending day, I'm not. In fact, I don't think I will ever really be ready. I asked how she managed to dial the phone. She said that as she contemplated this day being "that day", she decided that she was still finding too much enjoyment in each day and was not ready to let go. So she fought through the blackness and the failing hands to get a call through to me. And so, the effort of each day... the determination to make it the very best it can be... was rewarded her determination that "my days are still good".
Thanks for asking about us. We continue to learn more about ourselves, life and love with each passing day. How's Matt doing with his mountain climbing PWC? Have you gotten any of this nasty snow that we've been getting? We're north of you in VA. We were in Durham this last December for a concert... but really haven't gone anywhere else this winter. We're both looking forward to spring.
Again, thanks...
Jim
