Piece by piece

[Danijela]

These days I exist in some form of suspended disbelief that my partner will indeed die. He is on the vent pretty much 24/7, he hasn't got an infection, we have got a routine in place and a set of carers. Damage done by ALS is minimized...

However, I know this is the last stage, that he can go anytime...in his sleep, while I am at work... or live for another year. Time (although I desperately want more time) is not an issue, it is a sense of finality that has settled in of late.

I think of those who were around when I joined the forum, most are gone. I read about PEG feeds, cushions, speech devices, vents...all of that has already been done, we have moved to a different space.

Just needed to share... D

 

[Miss]

My heart is breaking for you right now.

 

[EGBAR]

D i am thinking of you and your husband, I find myself feeling the same way.

 

[mich5]

My thoughts and prayers are with you for strength and understanding.

 

[cervus]

I really feel for you, Danijela. Yasmin.

 

[momap53]

Prayers going out to you and your family during this transition.

 

[panguinjen]

I'm so sorry, wishing you both peace during this time....

Jen

 

[jamiem]

D, I think at sometime all of us are suspended in disbelief in the horror of this disease. Feel the love and the support coming your way along with the profound understanding we all have.

 

[WellsRuby]

Sending you heartfelt hugs and strength to get through this.

 

[Barbie]

Dani, I know exactly how you feel...you look at them lying there and think "how is this happening? how is this for real? when will I wake up?" It is like a cold chill sweeps through you and the curtain of your "normal" life is pulled back. I get that feeling alot these days too...

I am wish peace for you and L and the little man.

 

[Plumeria84]

I am so sorry

 

[brooksea]

Danijela, even when my husband was in hospice, I had all the confidence in the world that he would be living 6 or 8 months longer. Then, after the turn of events, I would go sit by his side in disbelief (yet knowing) that he was really going to die very soon. Not fair is it?

My heart aches for you as you go through this.

 

[sadiemae]

Dani, I get it. We have done all we can do.

 

[rachelg]

Dani - I understand this space you are in and I feel it and feel for you.

Thinking of you xxx

 

[joni51]

I always felt like I had more time with Bruce, and when he passed I was just in shock. Never really believed it was going to really happen..Hugs to all of you still fighting the battle with your loved ones..