When everything is said and done… and when the end has ended… the world still continues to turn but now it just seems so much emptier and so much quieter.
So… today starts the third day that I’ve had to learn to cope with being alone. Alone with the kids (adult kids)… alone with the dogs… but alone none the less. My hospice vigil ended Thursday October 16, 2020.
Bear had everything exactly the way he wanted it… and it fills me with peace and what passes for joy that that statement is true.
IPF is a horrible HORRIBLE disease for which there is no cure and the treatments aren’t fabulous. To die from your condition progressing to the end means your lungs because scar tissue and don’t inflate/deflate the way they are supposed to. In effect… you suffocate struggling for every single breathe.
Bear wanted to die peacefully in his sleep. He wanted to not suffer. He wanted to go before it got really really bad. (It was bad, don’t let me kid you… he was having more and more trouble doing things… walking to the bathroom… to the porch… keeping his oxygen up where it should be… and the horrendous cough… but it never got BAD bad.) He wanted my face to be the last thing he saw in this world. He wanted to tell me he loved me one last time. He wanted me to promise to do everything I could do to get his rings off his fingers so the crematorium didn’t have to cut his fingers off to get them off for me.
He got everything.
Thursday I took the day off work. I had things I needed to do and places I needed to do them and it meant running around about half a day. I had vacation still to take so I took the day.
Bear called me about 10:30. Monkey Butt was still home… in the basement… he knew we were going to be out (Squirrel and I) and he was mostly awake. Bear called… get Monkey Butt, I need help. So I called him and he came upstairs to help.
About 11, Monkey Butt called me. Come home. You need to come home NOW. Bear couldn’t get his 02 about 48 on his pulseox. Morphine and adivan weren’t doing it. I left (never did get done what I went out to do) right then and rushed (way faster than 25 mph) home. I was there. I did what I knew to do, which wasn’t much more than what was already done. I called hospice for help.
Dave was there within 20 minutes. Dave is my ginger savior and the single best nurse I’ve dealt with. He helped. He gave Bear more prednisone… cough medicine… morphine… another adivan… Bear never reacted to meds like most people do but with all of that he finally started to ease… breathing settled… O2 came up to the 80s… he started to relax and stop shivering… (4 blankets and a space heater and he was shivering hard). Dave was here about 90 minutes. Told Bear to rest, just get back into the bed (he was on the recliner) and get some sleep. Night nurse would come see him in the late evening and Dave would be back in the morning.
Dave talked to me on the porch. Meds were ordered (upped prednisone… more adivan… more morphine… and a zpack just in case). Make sure that I kept up the prescribed meds schedule until he was resting comfortably. Dave said it was probably time for the home health aid to start coming to help with baths and shaves.
By 2, Bear was sleeping. I gave him his 3:30 morphine. He was breathing, wanted the oxygen turned down to about 5 or 6. He was resting easy and went to sleep. I checked about every 15 or so minutes… sat reading by the bed. He scared me… no shit about he scared me this time. At 7 he wanted a drink of water. Called me April… he usually called for Squirrel when he wanted something because he was never sure about work… but he called for me. I got him water (and a straw) and he drank a little.
He opened his eyes. He told me not to ever forget he loves me. He told me that all the time so it wasn’t that huge a thing but he told me.
He went back to sleep.
He was still okay at midnight
He was still okay at 2:30 am.
I went back to sleep.
Dave said he would be okay in the morning.
At 5:15 Squirrel woke me (I was on the floor on the futon mattress)… “Mommy, I’m scared, I tried to wake daddy and he won’t wake up and his hands are freezing”.
no no no no no…
Sometime between 2:30 and 5:00 am he left us.
He wanted to die at home. He did.
He wanted to die in his sleep. He did.
He wanted to not suffer. He didn’t.
He wanted my face to be the last thing he saw. It was.
He wanted to tell me he loves me. He did.
He wanted us to not have to change his diapers or to bath him.
He wanted me to make sure I got his rings off so they didn’t have to cut his fingers off to do it.
How many of us can say that a death, no matter how hard after a life no matter how hard fought that someone we love got to die in exactly the way they wanted to go?
And now I learn how to do the only other thing that worried him… What am I going to do when he’s gone? How am I going to go on now… how will I go through the rest of my life without him… without my partner… without my best friend?
The house is so quiet without the oxygen concentrator sound that has been the constant white noise for the last 5 years. It feels so empty even with 4 dogs and two other adults.
Yesterday Monkey Butt took money we really didn’t have and bought me flowers because he thought I needed flowers. Yesterday I took money we really didn’t have and bought the only stupid garden rock that the garden center had that wasn’t for a pet… It wasn’t what I was after but I needed something.
There will be no funeral. There will be no service. I was hoping the florist would show up with a plant for me to keep alive… like the ones I remember from funerals when I was still “at home” but I guess when there is no funeral there are no flowers.
One neighbor brought a honey baked ham and two casseroles that I really should get cooked up soon. I didn’t have the wherewithal to cook anything (even put it in the oven and leave it) for the last two days.
Another neighbor brought salad and cut up turkey wraps and cookies. That got gobbled up pretty quickly. I promised I would take care of myself and stay as healthy as I can and I will… but eating is hard. Caring about eating is really hard.
And now it is over.
And now whatever is next is just next.
No more badassed walks pushing the wheelchair. He won’t have to figure out how to get through winter without going out for a walk in the cold…. no more badassed walks.
But now, January 9th and 10th, I will be doing The Goofy around and around and around the neighborhood so I can say I did it when it was supposed to be done for Bear. He won’t be sitting in the window (or on the porch) to see me come up the drive way the last time at mile 26.2 but he will know and he will be proud of me.