Today we waited.
Three separate girlfriends came by today to visit and bring food. This along with my nephew who has stood vigil with us since Tuesday morning and brought food…We are tired but well fed. Daddy on the other hand has not had any water since Saturday AM. Nothing, no food, no water.
He is hot to the touch. I keep looking at his feet for the marbling the nurse spoke of, but I don’t see anything that resembles her description. I am expecting that he will quit generating so much heat and will cool off…perhaps that is Hollywood fantasy on my part…his skin feels hotter and hotter. He is perspiring, even with the minimal covers pulled back.
Daddy’s respiration has been the same for so long now; it is beginning to sound normal. Bless his heart; he is a fighter…stubborn to the very end. I just checked his BP…92/48. Pulse rate 94. Since he has no physical illness other tan LBD with some PD on the side, I wonder if his heart will carry him for a while. They always said he had the CV system of a 40 year old.
Now when he breathes his mouth is curled back around his gums, his breaths are short and shallow. He is hot all over. Perhaps expulsion of heat energy is one way of letting go Life’s Force. You cannot destroy energy, but you can dissipate it.
I told Summer, the Nurse’s Aide I thought we could skip his bath today. Perhaps that was a mistake. I went into sit beside him and with a bit of private time, I told him again that I loved him. That he was a good Father, and I had Hubbie and Nephew Trey here to take care of me. Daddy was old school about who takes care of whom…I took his hand from under the cover and went to kiss it….OMG! Crotch…no…HOT CROTCH…ShooooWeeee. Ummm. Nasty. I had to get up and go scrub my hands. It took two complete washings to get the smell off. I wasted no time soaking a rag in hand sanitizer and cleaning his hands. I left them on top of the cover this time.
There is no response to any stimulation. I thought perhaps I could get a hand squeeze, but no. Just limp.
Vanderbilt called several times today to coordinate the transfer to VU and the harvesting. I have a “To Do” list - a single spaced typed full page of things I have to do to make the donation happen. All of which cannot start until the time of death. As lucky as I have been by getting proper contacts by knowing someone who knew someone who knew someone, this process is not easy. Congress should figure out how to get donations done without so much effort, so much paper work and it should never cost the donor or the family of the donor a dime. I can see why people might shy away from donating organs with all this legal CYA crap. Fax this; sign that; get two witnesses; one set for Harvard, one set for Vanderbilt, I bet there will be another set for the transporters.
Unfortunately we have not heard from Hospice today, other than the Nurse’s Aide calling. We were hoping to hear about getting Daddy transported to the Hospice center so the harvesting coordination could be faster and easier. I guess they do not have an available bed, but I wish they would call and tell me one way or the other. Taking shifts around the clock so we can be sure to get him iced immediately is pretty tiring and stressful.
Otherwise, to my girlfriends that came over today....Thank you. Having someone to talk to about work, flowers, the weather, sex…anything other than death is so appreciated. My wonderful girlfriends were with me today in shifts from 9 AM to 9 PM. Thank you. Thank you. You have no idea how much I needed the company.
There’s a lesson here for me…when this is happening to someone else…I’ve never known what to do. Now I know. You go visit, you pick up the phone, you write. You take over food. You sit when its time to be quiet and you laugh at every opportunity in between.
5 comments:
old friend said...
...so tell me, Pauline, what kind of food did those girls bring? like Loveless Cafe biscuits, Center Point bar-b-que, I'd even take a mess of greens and pot lickker...I'm so hungry
Hubbie said...
Hubbie here. Pauline agreed to take something to help her sleep and she is in bed now. No dogs aloud. The hospice nurse called around noon. They are coming out this eveing to take Lewy Daddy to a facility in town. Our vigil will transfer to there. Thank you for keeping her in your thoughts. It really does help. Thank you.
kddove said...
will you let us know where?
Laine said...
I finally read through every post. Phew! I feel schizophrenic right about now, having gone through every emotion known to man in such a short amount of time. Your honesty and detail are heartbreaking and then side-splitting...a laugh-riot and then treacherous. It's great. But I do ask myself WHY is this happening to any of us. I like to think everything happens for reasons we just don't get right now (hindsight is always 20/20, is it not?), but, my god, I just don't know sometimes. Again, I hope you know that you have done so much for so many of us, and that we are with you every step and every blog entry. I wish you all peace, REST and complete happiness. One day I hope we can all understand this. Thank God for the moments that make us laugh hysterically, and the complete irrational nature of this disease...sometimes I just smile and shake my head at the things Lewy makes them say and do. Or I look up toward the sky, shaking my finger and accusing my Mom of laughing at this whole situation and because she escaped it in the nick of time! Oh, and I KNOW she's laughing alright! But I'll get her back for this in time! Ha! I went to see my own Lewy today and he was having a pretty good day. He wanted to go to Long John Silver's, so off we went. Some disasters, probably needless to say, but a good day nonetheless.
Dee said...
Thinking of you all and wishing a peaceful end for Mr Lewy.