Saturday, March 7, 2015

A personal, no quilting, putting it all out there...post


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.
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.

6 comments:

Michele Bilyeu said...

My heart grieves with you, Diane. You are already beginning the process. Your mind knows, your heart is beginning to. During my five years of hospice, sitting by the bedside of dying people who became my friends, friends that I loved, the doctors would tell me 'the family can't let him/her' go. You have to talk to them, ask them if you can say it for them. I did, they did. So, I sat by the bedside. I talked about how much everyone loved him/her. I talked about they knew it was time to let their loved one know, that if it was too much for them to bear, the family would bear it for them. As long as the family holds on, the family lets the dying loved one believe that they have to stay alive, no matter how horrible this state of not living truly is. The loved ones must say..if it is too much for you, know that it is too much for me, too. I love you, but I will be ok if you need to go. I can do this. I have lots of love and support. We love and support you, but you need to let go when you need to let go. Until then, Diane. You are keeping him here for you. Not for him. He hates, hates, hates this. He is filled with unimaginable fear and anxiety. You need to only be strong with him, not with us, not with anyone else. But there in that room. He is still having to be the one being strong for you. Put your own fears aside. Feel only unbelievable amounts of love for this wonderful man. And with that love, tell him when he's had enough, it's ok to just go. When you finally say this, do this. So much fear and pain will lift from both of your hearts. He needs to know that when he is gone, you will never, ever, ever forget him. That you will always, always love him. But that when it's time, he will know, and he must find the light of the Divine and go into its path and presence. Give him this gift. Even if he is not ready. He needs to know this. We all love you so much..even if we have never met you. We feel your pain, we feel how it could be our pain. And we send you love never ending. Send that love to him and do not show your fear, show your love and your strength. It is there and you can do this.

Rachaeldaisy said...

Thinking of you all and always sending hugs!

Peggy Boltes said...

Diane, your pain,fear and grief is palpable. I can only tell you,that i love you, and you do need to be strong. Fintan, the man of your dreams is looking to you for relief.
We shall never know all the good that a simple smile can do.

smazoochie said...

Sweetheart, what can I REALLY do to help?!? Hugs & soup & etc & etc -- but really what do the O'Quilts need? I'm sure, as so often with people in disaster, it is financial help -- how can I do that?
Maybe your friends can guide me ...

ES said...

Oh crikey my heart just aches for you this evening Diane. I'm thankful that Michele (the first commenter) left such a thoughtful message. I often think of you all and I send you all my love this evening. x

Mary said...

Oh, Diane. I am totally at a loss for words. Thankfully, Michelle, said everything beautifully. Hugs going your way.