This personal post is for my dear man and his extended friends and family around the world who read this blog for updates on our personal tragedy.
It is also for myself, as I firmly believe that the healing is in the talking and the sharing.
xxoo I am so grateful for all of you.
I think I am losing my grip..again which leads to my not being able to control my asthma.
.
My favorite caregiver stayed until 11 last night to help..I pray she doesn't quit..
A mistake in the Trilogy humidifier led to near disaster.
Late at night was about..the alarm on Trilogy breathing machine..calling the emergency hotline...water gushing into his mask..getting it just in time as he can no longer swallow....Replacing the hose..stabilizing the mask..it is still uncomfortable for him, but he says it is ok.
.Doing the 20 pillow thing again..nothing helps because in the past two mornings, we find his head unsupported and the pillows in disarray.
.
Why cant I get this into my heart that I can fix nothing of this...nothing...
I cannot even seem to make him comfortable at times.
He is always asking for double Ativan..I certainly do not blame him..
.My head knows...my heart rebels..
" Do not go gentle into the good night, Rage rage against the dying of the light.."
Oh, Dylan Thomas...you knew...but what good does it do?????
Evidently my disposition is fragile...All of this just brings me right to the edge..
I need to talk with my husband for comfort...not available so much.
I need to talk with my mother for comfort, not available at all.
I need to talk with my husband for comfort...not available so much.
I need to talk with my mother for comfort, not available at all.
The last two nights, even the caregiver was exhausted. I hope she doesn't leave us. I am beginning to think that even an assisted living facility would not take him at this stage...not that we want to do that..
Here we go again, anxiety at midnight.
I wanted to name this post..."Where is the Calvary", but then, once again...the Calvary is all around us once I stop to look..
It is just that nothing fixes the core issue...horrid ALS stealing my love away
My man does all the finances, the bank accounts, etc. the taxes...everything.
I had thought that my daughter and I had access to it all..but then...
I was feeling money distress and went to Mr/O'Quilts. He was having a good 3 minutes and was able to check his I-pad...Now he cannot type, read his I-pad. Even holding the I-pad is too much. After this three minutes, he could no longer talk and struggled to breathe.
But for three minutes, he was able to check his Paypal account and tell us the code.
The Calvary had come and we did not even know it.
Today we found family and friend donations in his Paypal account that equal a month and a half of caregiving.
I cried...my style lately...
I cried with relief and I am forever grateful for his large extended family and friends for their generosity.
Powerlessness, acceptance and gratitude.
Please please accept this post as our love for you and our tremendous thank you.
Here we go again, anxiety at midnight.
I wanted to name this post..."Where is the Calvary", but then, once again...the Calvary is all around us once I stop to look..
It is just that nothing fixes the core issue...horrid ALS stealing my love away
My man does all the finances, the bank accounts, etc. the taxes...everything.
I had thought that my daughter and I had access to it all..but then...
I was feeling money distress and went to Mr/O'Quilts. He was having a good 3 minutes and was able to check his I-pad...Now he cannot type, read his I-pad. Even holding the I-pad is too much. After this three minutes, he could no longer talk and struggled to breathe.
But for three minutes, he was able to check his Paypal account and tell us the code.
The Calvary had come and we did not even know it.
Today we found family and friend donations in his Paypal account that equal a month and a half of caregiving.
I cried...my style lately...
I cried with relief and I am forever grateful for his large extended family and friends for their generosity.
Powerlessness, acceptance and gratitude.
Please please accept this post as our love for you and our tremendous thank you.
