[3:00 A.M FRIDAY, AUGUST 29th]
Susie has left the building...
Friday, August 29, 2008
Thursday, August 28, 2008
Gatherings
As per Susie's wishes, there will not be any form of wake or traditional funeral service. She did not have many last requests and actually would have preferred nothing at all, but it will be the rest of us that need this gathering of friends and family to celebrate her life and bring closure.
There will be 2 main gatherings.
One in Massachusetts and a final one here in California.
Neither of these are planned to take place very soon.
The gathering in Mass will be at the Carlisle town hall which will be organized by the Zielinskis.
The gathering in CA will be at Drakes Beach in Pt. Reyes National Seashore - where I proposed to Susie.
So, what I propose to all of you is that you join me on some Saturday for an afternoon at the beach. If my memory serves me correctly, I will take you for a short hike to show you where I proposed to her.
I will post more information in time, but don't hesitate to contact me if you wish to.
Peace and love to everyone
-Jonah
There will be 2 main gatherings.
One in Massachusetts and a final one here in California.
Neither of these are planned to take place very soon.
The gathering in Mass will be at the Carlisle town hall which will be organized by the Zielinskis.
The gathering in CA will be at Drakes Beach in Pt. Reyes National Seashore - where I proposed to Susie.
So, what I propose to all of you is that you join me on some Saturday for an afternoon at the beach. If my memory serves me correctly, I will take you for a short hike to show you where I proposed to her.
I will post more information in time, but don't hesitate to contact me if you wish to.
Peace and love to everyone
-Jonah
Thursday, August 28th
We believe that we are now within days, if not hours...
I have relayed everything that was sent to me and I can't thank everyone enough for their support and kind words for Susie and for me.
Melinda, the hospice nurse will be coming by soon to check on her again.
She said she would be able to judge better if we really are that close.
She can barely open her eyes and her breathing is quite rapid - and has been for almost 2 days now.
==== I'm sitting next to her in the wheelchair - between her and the window. I can hear the pond trickling away as I talk to her ====
I've told her many times that she is the best thing that has ever happened to me and that she completely turned my life around. She is my best friend - she is my wife and I love her. She makes me whole. We have a wonderful family. Never has 2 boys and 2 girls made me so happy. I love being married to her. We've traveled to many incredible places. Together. Done many incredible things. Together. I like to see her smile. I love to maker her laugh. I want her to be happy. I love coming home to her each day and sleeping next to her each night.
As hard as it is, I'm going to be OK. Mom and dad are going to be OK. We have each other. The kitties are going to be OK. The doggies are going to be OK.
So, it's OK for you to go. IT's OK to let go... It's OK... It's OK...
I have relayed everything that was sent to me and I can't thank everyone enough for their support and kind words for Susie and for me.
Melinda, the hospice nurse will be coming by soon to check on her again.
She said she would be able to judge better if we really are that close.
She can barely open her eyes and her breathing is quite rapid - and has been for almost 2 days now.
==== I'm sitting next to her in the wheelchair - between her and the window. I can hear the pond trickling away as I talk to her ====
I've told her many times that she is the best thing that has ever happened to me and that she completely turned my life around. She is my best friend - she is my wife and I love her. She makes me whole. We have a wonderful family. Never has 2 boys and 2 girls made me so happy. I love being married to her. We've traveled to many incredible places. Together. Done many incredible things. Together. I like to see her smile. I love to maker her laugh. I want her to be happy. I love coming home to her each day and sleeping next to her each night.
As hard as it is, I'm going to be OK. Mom and dad are going to be OK. We have each other. The kitties are going to be OK. The doggies are going to be OK.
So, it's OK for you to go. IT's OK to let go... It's OK... It's OK...
Wednesday, August 27, 2008
Wednesday, August 27th
WOW -
Everyone is shocked that she has hung on this long, but it's getting pretty clear that we don't have much time left. If you were thinking of visiting one last time, please don't wait. If you have anything that you need to say to her, now is the time. Even if she doesn't respond, you MUST say it. For your sake and hers. If you are extremely lucky, you just might get a hug or a smile.
If you wish me to say it for you, please send me your words.
Symptom check:
-------------
Memory:
It's hard to tell what she remembers and what she doesn't. She does remember people very well. Many stories she will smile at - indicating that she knows. Other times, she just blinks and you can't tell.
Vision:
Her vision is steadily getting worse. I think she can only see you when you are up close, though she does know where to look and her eyes will follow you as you move around the room a bit. I think she only sees blurry shapes. You can't show her pictures or anything like that however.
Balance/Strength:
She has been completely bedridden for the past month now, I guess. Less and less leg movements. Her arms are the only things she can move these days. She cannot sit up without the aid of the hospital bed. She's lost a lot of weight. Her head is leaning to the right again, and it seems like it hurts even more to move it. We had a massage person work on her neck for a long time, but she was still unable to move her neck - even with help.
Intake:
She is eating pretty much nothing these days. only drinking a little from an eye-dropper.
Body:
She has been completely incontinent for a long time now. It's getting harder to change her due to the pain in her neck and her being unable to help by rolling over. I often look at her to make sure she is still breathing - my heart stops until I see her chest move. Her arms and legs are regularly quite cold now.
Sleeping:
She sometimes sleeps for days and then seems to be more awake for a few hours, then back to sleeping again. Sometimes, the pain medication seems to knock her out for a few days, then she seems to come back around. She sleeps all night and then is awake for most mornings, then sleeping again.
Pills:
Besides the pain patch, we aren't really giving her anything at all anymore. Her other 2 liquid meds are anti-seizure, but she has been unable/unwilling to swallow most of the time, so most days we don't get any of her meds in her at all. It hasn't really been an issue, however since we've seen no seizure activity.
Episodes:
We have not seen any seizure activity for several weeks now.
Communication:
Mostly, she just stares and blinks.
She can barely communicate at all anymore. You can ask her a simple yes or no question and usually she won't answer, but sometimes you might get lucky. Speaking only happens rarely and it seems to take a ton of energy. Her voice is frail and quiet. Mostly, she can only just mouth the words without making any sound. It's truly a joy to hear her say anything these days. Since her face is almost in a permanent frown, her smile is priceless. It makes me cry every time I see it.
Humor:
She is still Susie however. - Watch what you say in front of her! She does hear everything! The sarcasm is still there. She uses facial expressions now, rolling eyes, shocked face, etc, but even these are rare.
Everyone is shocked that she has hung on this long, but it's getting pretty clear that we don't have much time left. If you were thinking of visiting one last time, please don't wait. If you have anything that you need to say to her, now is the time. Even if she doesn't respond, you MUST say it. For your sake and hers. If you are extremely lucky, you just might get a hug or a smile.
If you wish me to say it for you, please send me your words.
Symptom check:
-------------
Memory:
It's hard to tell what she remembers and what she doesn't. She does remember people very well. Many stories she will smile at - indicating that she knows. Other times, she just blinks and you can't tell.
Vision:
Her vision is steadily getting worse. I think she can only see you when you are up close, though she does know where to look and her eyes will follow you as you move around the room a bit. I think she only sees blurry shapes. You can't show her pictures or anything like that however.
Balance/Strength:
She has been completely bedridden for the past month now, I guess. Less and less leg movements. Her arms are the only things she can move these days. She cannot sit up without the aid of the hospital bed. She's lost a lot of weight. Her head is leaning to the right again, and it seems like it hurts even more to move it. We had a massage person work on her neck for a long time, but she was still unable to move her neck - even with help.
Intake:
She is eating pretty much nothing these days. only drinking a little from an eye-dropper.
Body:
She has been completely incontinent for a long time now. It's getting harder to change her due to the pain in her neck and her being unable to help by rolling over. I often look at her to make sure she is still breathing - my heart stops until I see her chest move. Her arms and legs are regularly quite cold now.
Sleeping:
She sometimes sleeps for days and then seems to be more awake for a few hours, then back to sleeping again. Sometimes, the pain medication seems to knock her out for a few days, then she seems to come back around. She sleeps all night and then is awake for most mornings, then sleeping again.
Pills:
Besides the pain patch, we aren't really giving her anything at all anymore. Her other 2 liquid meds are anti-seizure, but she has been unable/unwilling to swallow most of the time, so most days we don't get any of her meds in her at all. It hasn't really been an issue, however since we've seen no seizure activity.
Episodes:
We have not seen any seizure activity for several weeks now.
Communication:
Mostly, she just stares and blinks.
She can barely communicate at all anymore. You can ask her a simple yes or no question and usually she won't answer, but sometimes you might get lucky. Speaking only happens rarely and it seems to take a ton of energy. Her voice is frail and quiet. Mostly, she can only just mouth the words without making any sound. It's truly a joy to hear her say anything these days. Since her face is almost in a permanent frown, her smile is priceless. It makes me cry every time I see it.
Humor:
She is still Susie however. - Watch what you say in front of her! She does hear everything! The sarcasm is still there. She uses facial expressions now, rolling eyes, shocked face, etc, but even these are rare.
Monday, August 25, 2008
Sunday, August 24th
These past few days have held many ups and downs.
Many visitors have been lucky to get smiles and some classic facial expressions (rolling the eyes, a facial "laugh", wide-eyed disbelief) and even some memorable sentences:
"Tell Jonah to get his ass back in here" (LOL!)
"I love you too"
Of course, I can't recall enough of them - even when I say "I gotta remember that one"
perhaps in time...
Other visitors, however, have not been so lucky.
She seems to be more unresponsive these past 2-3 days. Her eyes are open, and she does look at you, but there have been very few smiles or any sign that she is hearing you. But we do know that she is hearing every word.
Many visitors have been lucky to get smiles and some classic facial expressions (rolling the eyes, a facial "laugh", wide-eyed disbelief) and even some memorable sentences:
"Tell Jonah to get his ass back in here" (LOL!)
"I love you too"
Of course, I can't recall enough of them - even when I say "I gotta remember that one"
Other visitors, however, have not been so lucky.
She seems to be more unresponsive these past 2-3 days. Her eyes are open, and she does look at you, but there have been very few smiles or any sign that she is hearing you. But we do know that she is hearing every word.
Friday, August 22, 2008
Friday, August 22nd
Susie really brightened up for Grace today.
It had started out as a really quiet morning.
Grace said Susie made her day when she smiled, so Susie smiled again and said,
"I learn something new every day"
Then I fed her some chocolate ice cream.
Melinda, the nurse was giving Susie dog treats for Kaili who was loving all the extra food! Kaili was taking them out of Susie's hand and Susie was smiling.
It had started out as a really quiet morning.
Grace said Susie made her day when she smiled, so Susie smiled again and said,
"I learn something new every day"
Then I fed her some chocolate ice cream.
Melinda, the nurse was giving Susie dog treats for Kaili who was loving all the extra food! Kaili was taking them out of Susie's hand and Susie was smiling.
Thursday, August 21, 2008
Thursday, August 21st
Not too much to report these last few days - sorry for the lack of updates.
There hasn't been much fidgeting with the diaper in a long time now.
Lots of sleeping - less leg movements during sleep, but she still moves her arms around, though not as much as before. She will hold her arm over her head for quite a long time. It's amazing it doesn't get extremely tired.
The small, precious joys that we still do get the most are simple smiles.
When someone new walks in the room, that usually makes her smile.
Facial expressions are also great to see. Usually, it's the "are you nuts?" expression or the "now you are just being silly" one.
There are many times where her eyes are open, but she doesn't respond at all. Not even to funny/silly comments that would have produced a smile. She will look at you when you speak, but there doesn't seem to be any response to what you are saying. I'm pretty sure she is comprehending what you are saying, but just can't respond in any noticeable way.
Speaking is quite rare these days - mostly, it's very labored and quiet. It's hard to understand her even when she is able to get something out. It's painful to say "what?" when she's worked so hard to say anything at all.
There hasn't been much fidgeting with the diaper in a long time now.
Lots of sleeping - less leg movements during sleep, but she still moves her arms around, though not as much as before. She will hold her arm over her head for quite a long time. It's amazing it doesn't get extremely tired.
The small, precious joys that we still do get the most are simple smiles.
When someone new walks in the room, that usually makes her smile.
Facial expressions are also great to see. Usually, it's the "are you nuts?" expression or the "now you are just being silly" one.
There are many times where her eyes are open, but she doesn't respond at all. Not even to funny/silly comments that would have produced a smile. She will look at you when you speak, but there doesn't seem to be any response to what you are saying. I'm pretty sure she is comprehending what you are saying, but just can't respond in any noticeable way.
Speaking is quite rare these days - mostly, it's very labored and quiet. It's hard to understand her even when she is able to get something out. It's painful to say "what?" when she's worked so hard to say anything at all.
Subscribe to:
Posts (Atom)